One Life Matters

Send A Letter & Possibly Save A Life

2011-03-15T13:09:00.005-05:00

On February 10, 2011, Representative Doris O. Matsui (D-CA) formally introduced the “Bone Marrow Failure Disease Research and Treatment Act” (H.R. 640).

H. R. 640 is invaluable legislation. It brings together resources from several Federal agencies to advance understanding of and treatment of bone marrow failure diseases such as Aplastic Anemia, Myelodysplastic Syndromes (MDS) and ParoPNH (PNH). As such, it and the bone marrow registry legislative bills are the single most important and valuable bills yet to be introduced to save lives of people with bone marrow failure diseases.

Senator John McCain, however, is proposing a bill to eliminate the funding to Bone Marrow Failure Research & Treatment that was allocated in February 2011. His purpose in doing this is obvious. That funding is under the Department of Defense & Research; he intends to redirect funding intended to save lives towards his war agenda. He wants those funds to take the lives of the thousands upon thousands of people in the USA who die from bone marrow failure diseases and the lives of our boys and girls whom are sent to fight for oil tycoons. That is just wrong.

YOU CAN HELP! Please take a few moments to visit the Grassroots page at AAMDS.org and send a letter to Senator McCain opposing his bill, and ask for your Senators' support. It's real easy. There are prewritten letters for you to use, just fill in your name and address, or you can write your own. Please send a letter and possibly save a life.

Aplastic Anemia affects approximately 10,000 to 12,000 people in the world each year. Leukemia affects approximately 245,000 people in the United States. Although Aplastic Anemia is non-cancerous, both it and Leukemia can be treated with a bone marrow transplant. The research and treatment funding to save those lives is in jeopardy with Senator John McCain's intended bill. Write to McCain and tell him that you oppose his bill. Write to your Senators and ask them to help save this funding in D.C. It only takes a minute to send these letters online.

Click here to go to the AAMDS.org Take Action page.

Or click here to go the AAMDS.org website.

YOU CAN ALSO WRITE TO:

Senator John McCain•Senator John McCain's Phoenix Office:
5353 North 16th Street
Suite 105
Phoenix, AZ 85016
Main: (602) 952-2410
Fax: (602) 952-8702

•Senator John McCain's Prescott Office:
122 North Cortez Street
Suite 108
Prescott, AZ 86301
Main: (928) 445-0833
Fax: (928) 445-8594

•Senator John McCain's Tempe Office:
4703 South Lakeshore Drive
Suite 1
Tempe, AZ 85282
Main: (480) 897-6289
Fax: (480) 897-8389

•Senator John McCain's Tucson Office:
407 West Congress Street
Suite 103
Tucson, AZ 85701
Main: (520) 670-6334
Fax: (520) 670-6637

•Senator John McCain's Washington Office:
241 Russell Senate Office Building
Washington, DC 20510
Main: (202) 224-2235
Fax: (202) 228-2862

Senator Doris MatsuiWashington Office
222 Cannon Building
Washington, DC 20515
-or-
Senator Doris Matsui
Sacramento Office
501 I Street, Suite 12-600
Sacramento, CA 95814

Send a letter to your Senator: AAMDS.org; Donate to AAMDS.

Summation - Death of People! & Civil Rights?

2011-03-12T13:08:00.007-06:00

Send a letter to your Senator: AAMDS.org; Donate to AAMDS.

In addition to revocation of collective bargaining rights, Governor Walker also encapsulated another hidden agenda in his bill, and has plans for a final death hand. The hidden agenda is to reform Medical Assistance; the death hand is two-fold; first, he intends to spin off UW-Madison hospital and clinics who are a national leader in life-saving research and treatment, and second, he intends to reform medical services at the state level.

The bill directs the department of public health services to 'assess' the medical assistance program and propose means by which it can be made more effective. As the spokesperson from the National Bone Marrow Donation Association put it, "That's not a bad thing. Despite how much you may like or dislike Governor Walker, to assess programs for effeciency is a good thing." Yes, it is; however, it goes on to say that the PHS can make law by means of medical emergency legislative paths. As well, what is written there in invisible ink is the call for reform and exclusions. One exclusion that other states have made during their assessments is of waiver programs; these are special programs to provide life-saving services such as bone marrow transplants. Without bone marrow transplants, people with Aplastic Anemia, as well as many other diseases (Leukemia, PNH, MDS, EB, and the list goes on and on and on) will die. That, Governor Walker, is a sentence to death by legislative pen.

Add to that legislative pen the stroke of deaths of millions with the spinning off of UW-Madison to make it act as a business on its own two feet. UW-Madison is a national leader in stem cell research. Those stem cells aren't fetuses, but rather blood stem cells donated from the marrow of people just like you and me, from the cords of babies donated by their parents to save a life, and form donors who are dying. They are on the brink of finding a solution for Alzheimer's. Do these Senators not realize how many millions of dollars could be saved by the Medicare and Medicaid programs by simply not confining an Alzheimer's patient to a nursing home? Multiples of millions in Wisconsin, to the billions of dollars nationwide, would be saved.

It's not only a Wisconsin problem. Senator John McCain is sponsoring a bill that will terminate funding to bone marrow research. That research is housed under the same arena as is the defense funding. Obviously, pro-war Senator McCain is seeking to stop dollars from going to save lives to put dollars towards the effort to take lives. We expect this given his history. McCain: there is no honor in killing Americans through a silent holocost on the medical assistance and research funding to fight for their freedom. We strongly disagree, and encourage everyone to write to Senator McCain to tell him not to kill the funding to bone marrow research.

PLEAS:

Whoever you are, you don't know that you won't one day need a bone marrow transplant. If the research is ended, where will you go? The US is the leader in medical research. Write to your Senator and to Senator John McCain to "Oppose any Amendment to Eliminate CDMRP Funding". You might also want to write to Doris O. Matsui (D-CA) to tell her that you support her and the “Bone Marrow Failure Disease Research and Treatment Act” (H.R. 640). This legislation would bring together the resources of several federal agencies to advance our understanding of, and treatments for aplastic anemia, myelodysplastic syndromes (MDS), and ParoPNH. We need your support now! It is simple to send that letter, just go to AA & MDS and fill in your name and submit the letter.

TO THOSE PROTESTING IN WISCONSIN: Please keep the reform appeals in Walker's bill in your minds and hearts as you fight for civil rights; this fight is for life.

Lent: One of my lenten sacrafices is to give two hours of my off time every day to helping further the fight of those who are fighting for their lives recovering from a bone marrow transplant.

Dear Senator McCain:

2011-03-12T08:35:00.000-06:00

Senator McCain:

Last year I almost died from a bone marrow failure disease. Because of research they found out that I had Aplastic Anemia. Because of research they were able to give me a bone marrow transplant. Because of research, the research you intend to take away, I am 1 year post transplant and am able to be with my children. Because of research my 2 and 3 year old children did not have to put their mother in the ground.

To all readers:

I am asking for your valuable and immediate support. Last year, Bone Marrow Failure Research & Treatment received funding; today, Sen John McCain supports a bill to eliminate that life-saving funding. Please go to http://AAMDS.org/ & support saving lives. It'll take 1 minute.

Send a letter to your Senator: AAMDS.org; Donate to AAMDS.

U.S. Held In Highest Regard For Cure

2011-03-12T06:35:00.003-06:00

If there will be a cure found for Aplastic Anemia, and we believe that there will one day be a cure, that cure will come from the United States. Senator McCain, you have the power to kill thousands.

Dear Senator McCain I am not a U.S resident but have the utmost respect for you country as you have always been great allies to England I am asking you to please not take away the funding into bone marrow disease research I dont have to rem...ind you of these terribble diseases as I know you are aware and I know resources are difficult but you are a leading country and others look upto you so your research in the U.S is paramount to continue if a cure is to be found I beg you not to take this funding away forget about statisitics its real people many many children are dying I have this disease myself and to be honest it grieves me more for the children it affects they are the ones with the disease and the ones which we as adults leave behind when we die from this disease as we will without the funding. I thankyou for taking the time to read my request respectfully yours Julie Anne Theobald.

2011-03-12T03:36:00.003-06:00

Read more about an issue by clicking on a link below. For Advocacy issues (where we suggest you take action with your elected officials) you can follow the instructions on the screen to easily communicate with your elected officials.

Oppose McCain Amendment to Eliminate Funding for Research
The Aplastic Anemia & MDS International Foundation has received word that Senator John McCain (R-AZ) may be offering an amendment, as early as next week, to eliminate all fiscal year 2011 funding for (more)

Help Get Cosponsors for Bone Marrow Failure Legislation
On February 10, 2011, Representative Doris O. Matsui (D-CA) formally introduced the “Bone Marrow Failure Disease Research and Treatment Act” (H.R. 640)... (more)

Wisconsin:
Johnson, Ron - (R - WI) Class III
2 RUSSELL COURTYARD WASHINGTON DC 20510
(202) 224-5323
Web Form: ronjohnson.senate.gov/public/index.cfm/contact

Kohl, Herb - (D - WI) Class I
330 HART SENATE OFFICE BUILDING WASHINGTON DC 20510
(202) 224-5653
Web Form: kohl.senate.gov/contact.cfm

On February 10, 2011, Representative Doris O. Matsui (D-CA) formally introduced the “Bone Marrow Failure Disease Research and Treatment Act” (H.R. 640). This legislation would bring together the resources of several federal agencies to advance our understanding of, and treatments for aplastic anemia, myelodysplastic syndromes (MDS), and ParoPNH. We need your support now!

Suggested letter:
I am writing to ask you to cosponsor the "Bone Marrow Failure Disease Research and Treatment Act" (H.R. 640), introduced by Representative Doris Matsui (D-CA) on February 10, 2011. We need your support. As a constituent coping with bone marrow failure disease, I ask that you support this new comprehensive approach to combating these devastating diseases.

Every year approximately 20,000 to 30,000 Americans are diagnosed with aplastic anemia, myelodysplastic syndromes (MDS), paroxysmal nocturnal hemoglobinuria (PNH), and other acquired bone marrow failure diseases.

The Bone Marrow Failure Disease Research and Treatment Act would leverage the expertise and resources of several agencies within the Department of Health and Human Services (HHS), as well as patient advocacy organizations, in a new comprehensive approach to combat bone marrow failure diseases. H.R. 640 increases the Federal Government's commitment to researching and treating aplastic anemia, MDS, PNH, and other acquired bone marrow failure diseases. The legislation directs the Department of Health and Human Services (HHS) to combat these diseases through a comprehensive strategy that includes creation of a national bone marrow failure disease registry so that researchers can combine their data in one place, yielding more effective research designs and better results and pilot studies through the Agency for Toxic Substances and Disease Registry to determine which environmental factors cause people to acquire bone marrow failure diseases.

Other highlights include minority-focused programs to make information on treatment options and clinical trials available to minority communities, particularly Hispanic and Asian American communities and Agency for Healthcare Research and Quality grants to help improve diagnostic practices and quality of care for patients with bone marrow failure diseases.

Last year, the U.S. House of Representatives approved a similar but modified version of the bill.

Congresswoman Matsui will be sending you a Dear Colleague letter in the coming weeks. Please consider becoming a cosponsor of this important legislation and contact Joel Bailey, Senior Legislative Assistant, in the office of Representative Matsui at joel.bailey@mail.house.gov or at (202) 225-7163.

Thank you for your attention to this important matter.

Who Is My Senator?

2011-03-12T03:35:00.002-06:00

Who is your Senator?

Look it up at Senate.

Strike Planned

2011-03-12T03:25:00.001-06:00

As the old phrase states: Extraordinary times require extraordinary measures. These are indeed extraordinary times in Wisconsin. The Budget Repair Bill that was passed by Governor Scott Walker and State Republicans will strip public employees of the right to collectively bargain and threaten the very existence of unions in the state.

Read Strike Plans

URGENT - WRITE TO SEN JOHN MCCAIN BEFORE HE KILLS SOMEONE YOU LOVE

2011-03-12T00:51:00.003-06:00

Here, we are reposting with permission a letter from a woman inflicted with Aplastic Anemia, PNH and Leukemia cells. If you haven't written to Senator John McCain, please take a moment to do so; the life that your letter may save may be yours or that of someone you love. If you cannot write a letter due to your medical or economic situation, please send us a message through this BLOG so that we can help you to do so.

Senator McCain,

My name is Exie Williams and I am a survivor of 2 forms of bone marrow failure. I am in remission, but I am not cured. The treatment options for people with bone marrow failure is minimal. By eliminating funding for the Congressionally-Directed Medical Research Programs at the Department of Defense for Bone Marrow Failure research, is without a doubt devestating to myself and many others. This is the world’s largest research program dedicated to finding a cure for bone marrow failure diseases like aplastic anemia, myelodysplastic syndromes, and PNH.

I ask that you take a moment and view a support group page and see the faces of the men, women, and children that this admendment will effect.

http://www.facebook.com/AplasticAnemia

I was diagnosed with Aplastic Anemia, PNH, and leukemia cells when I was 31 years old. I fought the fight of my life. There was a moment during my fight that it looked as if I was not responding to treatment and my father had to ask me what my wishes were for burial and for my young children. My 70 year old father had to face the fact that he may have to bury his daughter because we were running out of options. Through much prayer and faith, I pulled through and I won my fight and claimed remission. Everyday through the support group I created I see families who are losing their faith and their hope. Young children are dying or suffering, mothers and fathers are dying or suffering because there are no options left for them.

When I received this news today, I was heart broken for those who are not responding to treatment and who can not find suitable bone marrow donors.

I ask and pray that you will reconsider eliminating this last bit of hope that so many are holding on to. We need this research program to continue so that we can one day possibly have a cure.

I thank you for your time and consideration in this matter. This is so very important to so many who are suffering from bone marrow failure diseases.

Best Regards,

Exie Williams

----------------------------------------------------------------
Another letter to Senator John McCain:

Mr. McCain, I am the father of a 5 year old girl who has been diagnosed with MDS (myelodysplastic syndrome) This is a rare condition in which the body stops making blood or starts making malformed cells. This, as well as Aplastic Anemia, wh...ich she was originally diagnosed with, is a disease about which very little is known. 4 years ago, nothing was known, and they just supported the kids as best they could until they died. Leaps and bounds have been made though, and treatment options have become available, due in part to the DoD Bone Marrow Failure Disease Research program, which will be defunded as part of of an amendment you are adding to the Defense Appropriations Act for 2011. I understand that our deficit is out of control and spending must be cut, but when you cut medical research funding, you dont just cut the future of medical advancement, which is already under attack from the socialized medicine crowd. You also cut off the lives of people like my little girl, whose lives may depend on advances that have been and could be made on the strength of this research. There is so much waste in government as you pointed out in your campaign that could be cut or at least pursued before taking the knife to life saving research. I beg you for the sake of my daughter, Maelee Grace Sheehan, and on the behalf of so many others we have come to know as we fight this disease, please reconsider this portion of your cuts.

Wisconsin Bill Passes

2011-03-11T23:48:00.004-06:00

Wisconsin passes the bill to remove collective bargaining rights AND DIRECTS THE DEPARTMENT OF PUBLIC HEALTH SERVICES TO REVIEW AND REFORM MEDICAL ASSISTANCE IN WISCONSIN.

UW-Madison, a leader in stem cell research, is being spun off from the UW System.

What does it mean to people with bone marrow failure diseases?

Death.

My dad used to say, "You can put lipstick on a pig, but it's still a pig." Befitting, I think, for Governor Scott Walker.

Pass the recall sheet, I'll sign it, because when we said we wanted you to be conservative, Governor Walker, we did not mean by killing people. UW is one of the leaders in stem cell research. Walker, do you have any idea of how many billions of dollars would be saved by not putting people in nursing homes who have Alzheimer's? Mind you, billions of dollars are paid by medicare and medicaid to Canadian owned nursing homes.

"Recall Walker" Effort Begun

2011-03-04T12:48:00.002-06:00

Under Wisconsin laws, a Governor can be recalled if 25% of the voting population that voted him into office signs a petition. That effort has begun in Wisconsin via a pre-recall effort. The Recall Walker website provides an information signature form that the group is asking people to complete.

28 February 2011 is Disease Day

2011-02-25T22:55:00.001-06:00

February 28, 2011 is Rare Disease Day.

An estimated 30 million people are affected by one of about 7,000 rare diseases. Take a minute to pray for someone you might know and their daily fight to survive!!

Your fight is my fight! ♥

$597 Per Voter Balances The Budget

2011-02-25T17:09:00.003-06:00

Someone suggested that we just split the cost of balancing the budget, and move on with life.

Wisconsin reported a population of 5.6 million in 2009. Approximately 82% of Wisconsin are over the age of 18 years.

With a $2.7 billion deficit, a contribution of $588 would balance the budget.

Reduce the deficit by the $165 million that the reduction in benefits would amount to according to Walker's statements regarding the funding behind those benefits, and that makes the contribution $552 per voter to balance the budget.

Ah, but not everybody is working. While the reports show one thing, an estimated 270,000 people are out of work.

That puts it back to $586 PER VOTER, or $1173 per household, given that most households have two voters (and hopefully two workers).

A State Doesn't Live on Fed Aid Alone

2011-02-25T16:40:00.003-06:00

Wisconsin had long been a thriving industrial state and the home to some of the top manufacturing companies in the nation.

Wisconsin's flip from a state that had excess funds from taxation to one which is in deep debt could be seen back in 2002 when manufacturers closed their doors to go out of business or move to another state where labor and taxes were cheaper.

I recall visiting West Bend, Wisconsin in 2000 to find three thriving manufacturers supplying the majority of employment for the local and closely surrounding area. In 2001, one of those, a major manufacturer of pots and pans, had closed its doors. The next year, another closed. And the next year, there was only one farming equipment manufacturer left, and he was running part time.

When the gross domestic product loses ground, people move from middle income earners to low income earners, and while taxes decrease, the burden on the government increases by way of aid to people. Wisconsin eliminated welfare some years ago, and all that is left to help people are a few payments of electricity, food pantries, food stamps and health care. Under special programs, local businesses in Wisconsin have created low-income services, such as dental care, albiet with the assistance of funding. But other funding, such as housing assistance is gone.

Peaceful, But Tense

2011-02-25T05:29:00.004-06:00

At 10 East Doty Street, an office building just 'off of the square' and a stone throw from the capitol building, protestors marched on Koch Industries, Inc., who has an office on the 7th floor.

At 3:45 PM, the protestors marched from the capitol square down Martin Luther King Jr Blvd. towards the Doty entrance to 10 East Doty Street with drums beating loudly and chats heard over them, "Ho, ho, the bill must go." The core of the protest only lasted an hour, but protestors remained long after the close of business when I was escorted to my vehicle. Well into the evening hours, they could be seen standing in front of the Doty Street entrance shouting to cars as people were leaving the capital and local offices. Doty Street is one of the streets in the second square around the capitol, and a main drag for people on their ways home.

From early morning hours until at least 6 PM, building security personnel stood in groups at each ingress point and along hallways throughout the building. All of the elevators were locked down requiring people to have a security pass card to access any floor, but even those with a pass couldn't access the upper floors. Guards stood at the stairway doors. When I left at 6 PM, there were people standing near the doors trying to gain access to the building.

According to reports from several tenants of the building, there had been some incidences on the 7th floor where the Koch Industries office is located. Police were called to remove protestors.

Regardless of a person's stand on the issues, the current experience of Madison is one to behold. The protests are 'peaceful' as far as protests go for those we've witnessed on TV in other countries, but that doesn't eliminate the sense of fear, perhaps due to the mere gathering together of hundreds of people chanting, beating drugs and showing emotions in their faces if not with their fists and emphasis added to their messages by throwing their arm in the air. But there also is a sense of excitement. Several people commented on the protests remarking that they were pleased to see people standing up for their rights.

2011-02-24T21:43:00.003-06:00

One of the side effects of prolonged steroid usage such as a treatment for acute or chronic graph-versus-host disease is the possible infliction of Avasculor Necrosis (AVN), which is the death of bone (usually joints or long bones) due to the lack of blood supply.

Another side effect can be scar tissue on joints, particularly wrists, hands, fingers, hips, knees. Inflamation around these joins is similar to arthritis.

Treatments vary. One treatment path might include drugs, such as Sirolinus (a Rapamune drug).

Send a letter to your Senator: AAMDS.org; Donate to AAMDS.

Walker's Bill Proposes Permanent Changes

2011-02-23T15:05:00.001-06:00

The items in Walker's bill in assembly at this moment are for permanent changes to Wisconsin laws.

The proposed changes will not end with his term.

Announcement of Recall Effort Ineffective, or Not?

2011-02-23T14:05:00.002-06:00

Americans Against Immigrant Amnesty has filed electronic registration under the name American Recall Coalition in an effort to recall the eight Democractic Senators.

State law requires recalls to be filed by qualified electors from the legislator's district. A Utah based organization, person or company CANNOT legally file a petition for recall of a Senator in Wisconsin.

"The Government Accountability Board says that the group will need to find a 'sponsor' in each district, but that the 60-day clock started ticking with this group's filing of the paperwork." according to Fox 11.

The Democract Senators are:

Senators Fred Risser (D-Madison)
Mark Miller (D-Monona)
Jim Holperin (D-Conover)
Lena Taylor (D-Milwaukee)
Spencer Coggs (D-Milwaukee)
Robert Wirch (D-Pleasant Prairie)
Julie Lassa (D-Stevens Point) and
Dave Hansen (D-Green Bay).

Buffalo Beast

2011-02-23T11:44:00.001-06:00

Walker talks offline to assumed supporter, BuffaloBeast reports it. Unfortunately, pinging that site shows that it was taken offline.

The conversation however is available at the daily mail: http://www.dailymail.co.uk/news/article-1359918/Wisconsin-Governor-Scott-Walker-duped-newspaper-editor-posing-billionaire-backer.html.

Contact Walker - Serve Wisconsin

2011-02-23T09:02:00.003-06:00

Walker's contact information is:

Office of Governor Scott Walker
115 East Capitol
Madison WI 53702
Email: govgeneral@wisconsin.gov
Phone: (608) 266-1212

The Boards and Commissions for which the state of Wisconsin is seeking applicants is located at: Wisconsin Boards and Commissions. One of those commissions is the Emergency Medical Services Board, which is key to future changes to the Medical Assistance and Badger Care programs. Under Walker's bill, the Department of Health Services will have full control over the Medical Assistance program, and will be able to freely and carelessly create and pass laws under the Emergency Medical Services Board that effect benefits, including those needed for bone marrow transplants. If you can serve on that board, please apply right away.

Doctors, PA's, Nurses: your help is needed on that board; please consider serving it.

At minimum, everyone, please write Walker and voice your concerns over his Medical Assistance reform; tell him that we don't want Wisconsin playing God; we don't want any person in our state sentenced to death for lack of budgetary funds.

Medical Assistance Reform = Death Sentences By Legislative Pens?

2011-02-23T03:15:00.005-06:00

An Arizona man was denied a liver that had been type-match perfectly to him after it was delivered to the hospital where he lay waiting for it to save his life because budget cuts to the medical assistance program couldn't afford to pay for it, nor could he as he was indigent.

See: Arizona man sentenced to death by legislative budget cuts

If you were thinking that wouldn't happen in Wisconsin, think again.

Governor Walker's proposed budget reform bill includes a medical assistance reform act that may limit or even eliminate Badger Care, Wisconsin's medical assistance program that pays for transplants.

Governor Walker's medical assistance reform act seeks to push through a change that doesn't appear all that harmful on its face, but when you read between the lines, it is a formula for deletion of the medical assistance benefits that save the lives of many, many people in Wisconsin. People who have lost their jobs, and thus lost their insurance benefits, often find themselves meeting the federal povery guidelines and qualifying for Badger Care. The bill cleverly excludes those who are disabled. But the reality of the situation of a person who needs a transplant is that they are not considered to be 'disabled' by the administrative definition of that word until the moment at which they receive the transplant, per the department of Social Security. His bill has the potential to eliminate transplants for Wisconsin people in need of them who could not afford to pay the price.

That person could be you.

Cut budgets, cut pay raises, increase the costs of pensions and insurance to state employees to equalize what the rest of the private sector is paying, but don't play God and take life from people who need transplants.

Obviously, people in need of joint or bone replacements would also fall under the 'excluded' list because neither would be considered to be 'disabled' until such time that they were receiving the replacement, hence no benefits would be available until after the transplant were done unless they already qualified due to being impoverished provided that those benefits were still available after the study and changes.

Solidarity

2011-02-23T01:08:00.002-06:00

Firefighters joined teachers at the capital to protest Governor Walker's bill that removes some of the Teacher's Unions collective bargaining rights.

Meanwhile, Wisconsin National Guard members are visiting prisons to prepare to take over if prison guards walk off the job to join the protests.

Governor Walker's response in a public address this evening was to warn of layoff's if the Democrat legislators fail to return to work. Ultimately, Walker is placing the blame for some 5-6,000 layoffs anticipated immediately if the bill is not passed on the shoulders of the Democrats who ran away to Illinois.

Included in that bill is a Medical Assistance reform bill, noted below, which may affect those with diseases such as Aplastic Anemia and Leukemia whose lives are dependant upon costly medical procedures, namely bone marrow transplants.

2/3 Vote Signed Into Law For Tax Rate Increases

2011-02-23T01:02:00.001-06:00

Current Wisconsin law requires a simple majority to pass tax rate increases.

Governor Walker signed a bill on Tuesday, February 22, 2011, requiring a two-thirds vote to pass tax rate increases.

Walker Addresses Wisconsin

2011-02-22T22:45:00.000-06:00

Walker's address to Wisconsin.

One Life Matters - Aplastic Anemia Research: National Guard Preparedness

2011-02-22T21:38:00.000-06:00

One Life Matters - Aplastic Anemia Research: National Guard Preparedness

Doctor's Note Might Get Jail Time

2011-02-22T21:22:00.004-06:00

While teachers and the Teacher's Union are considering their options, the Governor has some answers.

One of the protestors claimed to be a doctor and offered 'sick notes' for teachers to get an excuse for being absent from work last Friday. While many of us dropped our jaws, there may be a judge dropping his gavel for criminal charges against that doctor and possibly against those receiving and using their 'sick notes'.

Dr. Pam Galloway, Wisconsin Senator, is a breast cancer surgeon. She has begun an investigation to determine if the doctors were acting alone, and found that they were in deed soliciting people for their sick notes.

The doctor claims that her investigation will cause the doctors to be investigated for criminal activity.

Walker Blocks Solidarity Website

2011-02-22T18:40:00.003-06:00

Walker is accused of blocking a website that was being used to organize protestors.

Walker says, "I didn't block the website."

Let's keep the facts straight, folks!

Amid reports that the site -- defendwisconsin.org - was inaccessible on Monday and Tuesday morning, Wisconsin Democratic Party press secretary Graeme Zielinski pointed the finger at Walker and other Republicans, accusing them of a "direct assault on the First Amendment." A liberal blogger at the website ThinkProgress accused Walker of "taking a page from former Egyptian Dictator Hosni Mubarak and cutting off internet access to key protest organizers within the state Capitol building."

If a website is new, there is a chance that the Wisconsin administrative office responsible for Internet access may block it. If a site has viruses, or publishes threats, if it uses such a large amount of band width, it may cause its own issues with people accessing it.

National Guard Preparedness

2011-02-22T15:47:00.004-06:00

Although Fox 11 reports that a spokesperson for the Wisconsin National Guard admitted that the guard was visiting prisons, it was merely in preparedness but not at the request of Governor Walker.

Let's keep the facts straight!!

Last week, Governor Walker requested that the National Guard be prepared to handle any and all situations should the needs arise given the announcement of his bill.

Governor Walker stated in an interview on video at Fox 11 that he didn't expect all of the publicity that came about because of his bill, particularly the national vision.

We find that calling on the National Guard infers that one expects shit to hit the fan, regardless of whether its thrown from Waupaun, Neenah, Green Bay, Richmond or Chicago!

Walker's Medical Assistance Bill May Affect Helpless

2011-02-22T13:01:00.009-06:00

Neatly tucked away in the confines of obscure language is the Medical Assistance reform portion of Walker's bill that if read closedly reveals the means by which he provides the path to elimination of - or at the very least extreme cut-back's to - the Medical Assistance program in Wisconsin, known as Badger Care.

While an estimated 70,000 people voice their opinions about being forced into a rule-aligned bargaining agreement with the state of Wisconsin, who is speaking for the victims of diseases, foreign wars, mental disabilities, and poverty due to loss of jobs or injury?

Nobody.

That is sad.

While the Associated Press continuously erroneously reports the situation in Wisconsin (NOTE: all of our schools are in session today, with the exception of those which were snowed-under and delayed 2 hours), and there weren't 200,000 in Madison's capital but rather about 70,000 in and outside of the grounds, protesting their rights to collective bargaining, nobody is speaking out about the helpless people of our society. What is wrong with this picture?

Arizona sentenced a man to death with a denial of a liver transplant after a matched donor had been found because the state couldn't afford it.

What is wrong with this picture?

Put yourself in his shoes. No, put yourself IN his shoes. Do you envision it yet? Do you see that your life will end because you lost your job, nearly lost your home but for hard work and good financial planning you did before you got sick, and now without insurance must tell your little girl that you will leave her before the year ends. Do you see it? Do you feel it?

What are you doing about it?

Read Walker's Bill.

Public Assistance Reform under Walker

2011-02-22T09:00:00.004-06:00

Walker's bill provides appropriation of TANF program funds from Federal Government:

PUBLIC ASSISTANCE
Reflecting the receipt of emergency contingency funds under the Temporary Assistance for Needy Families (TANF) block grant program, this bill increases by $37,000,000 the amount of TANF moneys allocated for the earned income tax credit.

Walker's bill also spins off extensive medical research and medical provisions, including blood stem cell research, leukemia research, bone marrow transplant facilities, research and funding, and the list goes on as to those areas in which UW-Madison has contributed through UW Hospitals and Clinics:

OTHER HEALTH AND HUMAN SERVICES
This bill eliminates the UW Hospitals and Clinics Board, a state agency assigned the single duty to enter into a contractual services agreement with the UW Hospitals and Clinics Authority to provide the services of state employees who are in clerical, blue collar and nonbuilding trades, building trades crafts, security and public safety, and technical collective bargaining units. The bill also transfers all employees of the UW Hospitals and Clinics Board to the UW Hospitals and Clinics Authority.

Walker's Medical Assistance Reform Act

2011-02-22T03:43:00.017-06:00

Walker's bill on Medical Assistance
Although the language is illusive, the outcome is this: current law requires changes to Badger Care to be manifested from the Federal Government and administered locally. The new bill removes Federal law governance and places the administration and law making into one body under the state Governor. This change has the distinct possibility of extensively reducing benefits to Badger Care insured persons or revoking them. The bill's MA provisions are quoted verbatim below.

It is one thing to make state employees pay for benefits that the private sector can only dream about (pensions are all but history in the private sector) and the insurance benefits long enjoyed by state employees would make you drule, but it is quite another thing to play God.
In Arizona, a family man in need of a liver transplant to survive was denied the operation after a matched donor had been found. He will die before the end of this years. At some point while the legislature that sentenced him to death is driving around in his mercedes benz or playing with his children on his back lawn, the family man that was denied a transplant will explain to his elementary-aged daughter that he will die this year. Congratulations, Arizona, we didn't know God had entered your legislature. Congratulations, Wisconsin, you are not far behind.

HEALTH AND HUMAN SERVICES
MEDICAL ASSISTANCE

Under current law, DHS administers the Medical Assistance (MA) program, which is a joint federal and state program that provides health services to individuals who have limited resources. Some services are provided through programs that operate under a waiver of federal laws related to medical assistance (MA waiver programs).

This bill requires DHS to:
study potential changes to the MA state plan and
study potential changes to waivers of federal law relating to: medical assistance for certain purposes, including increasing the cost effectiveness and efficiency of care for the MA program and MA waiver programs and improving the health status of individuals who receive benefits under the MA program or an MA waiver program.
If DHS determines, as a result of the study, that revision of existing statutes or rules would be necessary to advance any of the purposes for which the study was conducted, DHS may promulgate rules to implement certain changes, including making certain requirements, modifying benefits, revising provider reimbursement models, developing standards and methodologies for eligibility, and reducing income levels for purposes of determining eligibility.
Before promulgating a rule, DHS must submit the proposed rule and any plan developed as a result of the study to JCF for review.
DHS must submit an amendment to the state MA plan or request a waiver of federal laws related to medical assistance, if necessary, to the extent necessary to implement any proposal.
If the federal Department of Health and Human Services does not allow the amendment or does not grant the waiver, DHS may not put the rule into effect or implement the proposal.
To reduce the eligibility income levels to a certain amount, DHS must request a waiver from the secretary of the federal Department of Health and Human Services to permit DHS to have in effect eligibility standards, methodologies, and procedures that are more restrictive than those in place on March 23, 2010.
If DHS does not receive approval for the waiver, DHS must reduce the eligibility income levels for MA programs and MA waiver programs to 133 percent of the federal poverty line for adults who are not pregnant and not disabled, as allowed under federal law.
DHS may promulgate the rules as emergency rules.
PUBLIC ASSISTANCE
Reflecting the receipt of emergency contingency funds under the Temporary Assistance for Needy Families (TANF) block grant program, this bill increases by $37,000,000 the amount of TANF moneys allocated for the earned income tax credit.
Read the bill here (http://legis.wisconsin.gov/JR1SB-11.pdf)

Federal Poverty Levels (FPL)

The poverty income levels are used to determine enrollment for BadgerCare Plus. Those may be found at access.wi.gov or here.

One Life Matters - Aplastic Anemia Research: Walker Medical Assistance Hidden Agenda

2011-02-22T03:25:00.000-06:00

One Life Matters - Aplastic Anemia Research: Walker Medical Assistance Hidden Agenda

Insurance Saves Lives

2011-02-22T02:32:00.003-06:00

As Aplastic Anemia progresses to Severe Aplastic Anemia and then to Very Severe Aplastic Anemia, the patient will ultimately become 'disabled' although only for a period of time in the patient's lifetime.

As the patient's disease progresses, s/he will ultimately become unable to work due to the extreme exhaustion, very high susceptibility to infection, inability to concentrate and remember, and of course, anxiety. The typical patient will experience anxiousness, depression, and changes in blood pressure.

The average cost of a single bone marrow transplant is in excess of $150,000.00, and depending upon the treatments necessary before, during and after the transplant, often rise to the $200,000.00 to $300,000.00 ranges.

Medications necessary before, during and after the treatment are extensive. Typical costs range from $10,000.00 to $50,000.00.

A bone marrow transplant patient remains hospitalized in special facilities to protect their lives during the transplant when their immune systems are completely killed off and for approximately 20-30 days post transplant.

Patients attend clinic and receive blood draws regularly: usually two to three times per week immediately upon release from the hospital and for several months thereafter. Eventually, clinic appointments can be reduced to once to twice per week, and then eventually to once every other week, then monthly, then every three months, then every six months until they reach annual appointments at the four or five year mark.

From the time of release from the hospital until the patient is considered 'cured' of this terrible disease, the patient is on medication on a decreasing schedule. Some of those medications are as inexpensive as $1.00 each; most cost much more.

When a person receives a bone marrow transplant, they are considered temporarily disabled for Social Security purposes on the day of the transplant. They cannot return to work until released by their medical team. That release is subsequent to removal from immunosuppressant drugs.

Complications can increase costs, such as infections or development of Graph-versus-host disease.

Insurance, medical assistance programs, medical research, drug research, stem cell research and our wonderfully brilliant doctors save lives.

Leading To BMT

2011-02-22T01:33:00.004-06:00

Aplastic Anemia is a bone marrow failure disease in which the blood stem cells in the bone marrow fail to produce sufficient life-sustaining blood cells. Failure to treat Aplastic Anemia is life-threatening. Aplastic Anemia is however a curable disease if the patient can receive a bone marrow transplant from a matched donor. (See Aplastic Anemia - Be The Match - Donate Marrow - Marrow.org)

During the initial stages of Aplastic Anemia, a common symptom is tiredness, but a person may not recognize any noticeable signs. As the disease progresses, the tiredness does, too. If labs including a complete blood count aren't run, the disease will continue without diagnosis.

As the disease progresses, blood stem cells in the bone marrow die, which drastically reduces the numbers of cells produced. The body recognizes the lack of cells, and reacts by producing blasts of immature cells that fail to meet the demands upon them. Tiredness turns to extreme exhaustion. As Neutrophils decline, so do the numbers of white cells, which results in vunerability to infection. The patient becomes neutropenic - unable to fight off infection.

If diagnosis hasn't been attempted up and until this point, an infection or extreme exhaustion often cause a patient to seek medical attention. A CBC will show the details of the progressing Aplastic Anemia. A regime of antibiotics, anti-viral, anti-fungal, and anti-bacterial drugs are prescribed quickly.

Very Severe Aplastic Anemia will reveal quick declining blood counts, which require transfusions to maintain life. If ATG or other immunosuppressant drugs haven't been attempted, they may be recommended. Alternatively, the recommendation may be for a bone marow transplant.

A bone marrow transplant is a transplant of blood stem cells taken from a closely-matched donor and infused into the patient. The blood stem cells make their way to the bone marrow, seat themselves in the soft boney tissue, grow and begin to produce blood cells (engraftment). Those cells are life.

A bone marrow transplant is a means by which patients with Aplastic Anemia are cured of the disease.

Do something really big: BE THE MATCH! Marrow.org.

Federal Poverty Income Levels - Wisconsin 2011

2011-01-01T12:56:00.000-06:00

Federal Poverty Levels (FPL)

The following income levels are
used to determine enrollment for BadgerCare Plus. To see if you may be
able to enroll, go to access.wi.gov
and apply today.

Effective February 1, 2011

Family size	100% Monthly Income	150% Monthly income	200% Monthly income	300% Monthly income
1	$ 907.50	$1,361.25	$1,815.00	$2,722.50
2	$1,225.83	$1,838.75	$2,451.67	$3,677.50
3	$1,544.17	$2,316.25	$3,088.33	$4,632.50
4	$1,862.50	$2,793.75	$3,725.00	$5,587.50
5	$2,180.83	$3,271.25	$4,361.67	$6,542.50
6	$2,499.17	$3,748.75	$4,998.33	$7,497.50
7	$2,817.50	$4,226.25	$5,635.00	$8,452.50
8	$3,135.83	$4,703.72	$6,271.67	$9,407.50
For each additional person, add:
	$318.33	$477.50	$636.67	$955

Hickmann Catheter Infection

2009-12-19T21:37:00.004-06:00

Can an infection develop in the Hickmann catheter and not show up in a grown culture or on a slide?

Yes. Contrary to popular belief, infections can actively exist in the body (meaning that they are alive and growing) and still not be detectable in a set of cultures or on a slide.

There are several reasons why this can occur. One of those reasons is that the cultures and slides are not looking for the correct type of infection.

What is done?

If the infection is believed to be treatable, the catheter will likely be left in if at all possible so that medication can be infused into the body more easily.

If the infection either cannot be treated, or has reoccured, then the hickmann will likely be removed.

Options

One alternative to a hickmann is an IV. If the patient is being treated with chemotherapy or other drugs after chemo treatment, an IV may not be the ideal route because the veins may not be able to handle the intense infusion of drugs, as well as other reasons. Sometimes, an IV will be placed in each arm temporarily. Once the infection is cleared, a PIC line can be implemented, and the IV's removed.

Lung Injury After Transplant

2009-10-17T03:20:00.001-05:00

Transfusion related acute lung injury (TRALI) is an uncommon but potentially fatal adverse reaction to transfusion of plasma containing blood components. We describe a case of 10-year-old male child with aplastic anemia, platelet count of 7800/l, B positive blood group who developed fever (39.2C), difficulty in breathing and cyanosis within 2 hrs after transfusion of a random platelet concentrate. Despite the best resuscitative efforts, the child died within next 24 hrs. The present case highlights the fact that TRALI should be kept as a differential diagnosis in all patients developing acute respiratory discomfort within 6 hrs of transfusion. Without a 'gold standard' the diagnosis of TRALI relies on a high index of suspicion and on excluding other types of transfusion reactions. Notification to transfusion services is crucial to ensure that a proper investigation is carried out and at-risk donor and recipients can be identified, and risk reduction measures can be adopted.

http://www.ncbi.nlm.nih.gov/pubmed/19805974?ordinalpos=7&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_DefaultReportPanel.Pubmed_RVDocSum

Misdiagnosed Aplastic Anemia

2009-10-17T03:17:00.000-05:00

Hairy cell leukemia (HCL) is occasionally misdiagnosed as aplastic anemia when only a few leukemic cells are present in the circulation. Here, we describe a patient with HCL who initially presented with pancytopenia and received a diagnosis of aplastic anemia. The patient was treated with immunosuppressive therapy including cyclosporine A and anti-thymocyte globulin (ATG). No blood cell transfusion was required for approximately 3 years after ATG therapy. She was referred to our hospital because of an abdominal mass and requiring periodic blood transfusions. A bone marrow biopsy at this time revealed proliferation of lymphocytes with a fried egg appearance and an increase in reticulin fibers that are typical findings of HCL. It is notable that our patient with a presumably long history of HCL and an increase in marrow reticulin fibers showed good recovery of hematopoiesis after cladribine therapy. Some HCL patients may receive an initial diagnosis of aplastic anemia and may show a good response to ATG masking the underlying HCL.

http://www.ncbi.nlm.nih.gov/pubmed/19826898?ordinalpos=3&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_DefaultReportPanel.Pubmed_RVDocSum

Cyclophosphamide Results

2009-10-17T03:13:00.001-05:00

OBJECTIVE:
To determine if high-dose cyclophosphamide is an effective therapy for children with refractory severe aplastic anemia (SAA).

BACKGROUND:
SAA is an illness characterized by the depletion of hematopoietic precursors associated with life-threatening complications. Hematopoietic stem cell transplant (HSCT) is the treatment of choice if a human leukocyte antigen (HLA)-related donor is available. Immunosuppression with anti-thymocyte globulin (ATG) and cyclosporine A (CSA) is an option for patients who are not HSCT candidates. Unrelated donor HSCT has been used with limited success. High-dose cyclophosphamide has been used successfully in the treatment of adults with SAA, but experience in children is limited.

PROCEDURE:
Five pediatric patients who had failed previous immunosuppressive therapy for SAA were treated with high-dose cyclophosphamide (45 mg/kg/day x 4 days).

RESULTS:
After 12 months of treatment, two of five patients experienced a complete response with high-dose cyclophosphamide therapy. The two complete responders achieved red cell recovery with a hematocrit of >36% at days 212 and 112 and platelet recovery with a platelet count of >100 x 10(9)/L at days 126 and 324. Of the remaining patients, one patient failed to respond, and two patients expired from infectious complications. CONCLUSIONS: High-dose cyclophosphamide can lead to complete responses in children with SAA who have failed to respond to traditional immunosuppressive therapy. Pediatr Blood Cancer (c) 2009 Wiley-Liss, Inc.

http://www.ncbi.nlm.nih.gov/pubmed/19827142?ordinalpos=2&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_DefaultReportPanel.Pubmed_RVDocSum

Cyclosporine Warning

2009-10-17T02:56:00.003-05:00

[Posted 07/14/2009]

The FDA is requiring the makers of certain immunosuppressant drugs [Sirolimus (Rapamune), Cyclosporine (Sandimmune and generics), Cyclosporine modified (Neoral and generics), Mycophenolate mofetil (Cellcept and generics), Mycophenolic acid (Myfortic)] to update their labeling to reflect that immunosuppressed patients are at increased risk for opportunistic infections, such as activation of latent viral infections, including BK virus-associated nephropathy. These immunosuppressant drugs are used to protect against the rejection of certain organ transplants. The association of BK virus-associated nephropathy has previously been reported for another immunosuppressant drug, tacrolimus (Prograf). Monitoring for this serious risk and early intervention by the health care provider is critical. Adjustments in immunosuppression therapy should be considered for patients who develop BK virus-associated nephropathy.

FDA is continuing to review the safety of immunosuppressant drug products used in renal transplantation. The FDA urges both healthcare professionals and patients to report side effects from the use of immunosuppressant drug products to the FDA's MedWatch Adverse Event Reporting program. For more information visit the FDA website at: http://www.fda.gov/Safety/MedWatch/SafetyInformation and http://www.fda.gov/Drugs/DrugSafety.

Important Warning:

Cyclosporine is available in its original form and as another product that has been modified (changed) so that the medication can be better absorbed in the body. Original cyclosporine and cyclosporine (modified) are absorbed by the body in different amounts, so they cannot be substituted for one another. Take only the type of cyclosporine that was prescribed by your doctor. When your doctor gives you a written prescription, check to be sure that he or she has specified the type of cyclosporine you should receive. Each time you have your prescription filled, look at the brand name printed on your prescription label to be sure that you have received the same type of cyclosporine. Talk to your pharmacist if the brand name is unfamiliar or you are not sure you have received the right type of cyclosporine.

Taking cyclosporine or cyclosporine (modified) may increase the risk that you will develop an infection or cancer, especially lymphoma (cancer of a part of the immune system) or skin cancer. This risk may be higher if you take cyclosporine or cyclosporine (modified) with other medications that decrease the functioning of the immune system such as azathioprine (Imuran), cancer chemotherapy, methotrexate (Rheumatrex), sirolimus (Rapamune), and tacrolimus (Prograf). Tell your doctor if you are taking any of these medications, and if you have or have ever had any type of cancer. To reduce your risk of skin cancer, plan to avoid unnecessary or prolonged exposure to sunlight and to wear protective clothing, sunglasses, and sunscreen during your treatment. If you experience any of the following symptoms, call your doctor immediately: sore throat, fever, chills, and other signs of infection; flu-like symptoms; coughing; difficulty urinating; pain when urinating; a red, raised, or swollen area on the skin; new sores or discoloration on the skin; lumps or masses anywhere in your body; night sweats; swollen glands in the neck, armpits, or groin; trouble breathing; chest pain; weakness or tiredness that does not go away; or pain, swelling, or fullness in the stomach.

Cyclosporine and cyclosporine (modified) may cause high blood pressure and kidney damage. Tell your doctor if you have or have ever had high blood pressure or kidney disease. Also tell your doctor if you are taking any of the following medications: amphotericin B (Amphotec, Fungizone); cimetidine (Tagamet); ciprofloxacin (Cipro); colchicine; fenofibrate (Antara, Lipophen, Tricor); gemfibrozil (Lopid); gentamicin; ketoconazole (Nizoral); melphalan (Alkeran); nonsteroidal anti-inflammatory drugs such as diclofenac (Cataflam, Voltaren), naproxen (Aleve, Naprosyn), and sulindac (Clinoril); ranitidine (Zantac); tobramycin (Tobi); trimethoprim with sulfamethoxazole (Bactrim, Septra); and vancomycin (Vancocin). If you experience any of the following symptoms, call your doctor immediately: dizziness; swelling of the arms, hands, feet, ankles, or lower legs; fast, shallow breathing; nausea; or irregular heartbeat.

If you have psoriasis, tell your doctor about all the psoriasis treatments and medications you are using or have used in the past. The risk that you will develop skin cancer is greater if you have ever been treated with PUVA (psoralen and UVA; treatment for psoriasis that combines an oral or topical medication with exposure to ultraviolet A light); methotrexate (Rheumatrex) or other medications that suppress the immune system; UVB (exposure to ultraviolet B light to treat psoriasis); coal tar; or radiation therapy. You should not be treated with PUVA, UVB, or medications that suppress the immune system while you are taking cyclosporine (modified) to treat psoriasis.

Keep all appointments with your doctor and the laboratory. Your doctor will order certain lab tests to check your body's response to cyclosporine or cyclosporine (modified).

TOP CANCER HOSPITALS WITH APLASTIC ANEMIA FOCUS

2009-10-16T23:23:00.003-05:00

U. S. News publishes the top cancer hospitals list:
http://health.usnews.com/health/best-hospitals/cancer-hospital-rankings/

Mayo Clinic, Rochester Minnesota
http://health.usnews.com/health/best-hospitals/mayo-clinic-5000000/cancer
Reputation Score: 27.8%
Ranking: #4
Score: 59.6

University of Washington Medical Center, Seattle, Washington
http://health.usnews.com/health/best-hospitals/univ-of-washington-medical-ctr-6910750/cancer
Reputation Score: 18.7%
Ranking: #6
Score: 47.7

University of Massachusetts General Hospital, Boston, Massachusetts
http://health.usnews.com/health/best-hospitals/massachusetts-general-hospital-6140430/cancer
Reputation Score: 14.2%
Ranking: #7
Score: 43.8

How top hospitals selected

A Study - Transplant Treatment Severe Aplastic Anemia - Journal of American Society of Hemotology

2009-10-16T02:45:00.002-05:00

Severe aplastic anemia: a prospective study of the effect of early marrow transplantation on acute mortality

BM Camitta, ED Thomas, DG Nathan, G Santos, EC Gordon-Smith, RP Gale, JM Rappeport and R Storb

A prospective randomized trial of therapy for severe aplastic anemia was designed to compare early bone marrow transplantation with conventional treatments. All patients with a sibling matched at the major histocompatibility region were transplanted. Transplantation was performed with 17-100 (median 33) days of original diagnosis. Conventional treatments included transfusion support with or without androgens. Twenty-four of 36 patients intered on the transplant arm are alive after 4-20 (median 9) mo with full marrow reconstitution. Only two are limited by chronic graft-versus-host disease. In contrast only 12 of 31 conventionally treated patients are alive. Six of these survivors have improved, five incompletely. The 19 nontransplant deaths have occurred within 1-11 (median 3) mo of diagnosis. Compared to nontransplant regimens, early transplantation more effectively restores normal marrow function and decreases the acute mortality of severe marrow aplasia (p = 0.006). Pending longer follow-up, early marrow transplantation appears to be the most effective available treatment for severe aplastic anemia.

SUMMARY
http://bloodjournal.hematologylibrary.org/cgi/reprint/48/1/63 (2007 article – the key to successful treatment according to the study is early transplant (within 17-100 days or original diagnosis)). Further reading evidences that siblings were matched for all participants in the study, an excellent citation. Patients were given prednisone (10 mg sq m/day) to detect underlying leukemia. Cyclophosphamide was used alone for conditioning for engraftment. ATG or ATS and procarbazine (PCB) were given. After transplant, methotrexate was given to ameliorate potential graft-versus-host disease.

Study included 17 females transplanted who had idiopathic etiology (severe aplastic anemia from an unknown cause). Diagnosis was made within 17 weeks. Initial, PMN range was 0-1500 (avg 200), 1-23 platelets (avg. 6k), .1-1.4 retriculocytes (avg. .1%), and 40-99 nonmyeloid marrow cells (avg. 85%).

26 patients received CY alone, 10 CY plus ATG and PCB in preparation for engraftment.

Immunosuppression began within 12-97 days after diagnosis (avg. 33 days). Delays in treatments were due to INCOMPATIBLE DONORS, WAITING FOR AN AVAILABLE BED, DIAGNOSIS, INFORMED CONSENT (OF PATIENT AND FAMILY).

Initial complication was sepsis (https://www.google.com/health/ref/Sepsis).

The Aplastic Anaemia–Paroxysmal Nocturnal Haemoglobinuria Syndrome

2009-10-16T02:31:00.005-05:00

http://bloodjournal.hematologylibrary.org/cgi/reprint/48/1/63 (2007 article – the key to successful treatment according to the study is early transplant (within 17-100 days or original diagnosis)). Further reading evidences that siblings were matched for all participants in the study. Patients were given prednisone (10 mg sq m/day) to detect underlying leukemia. Cyclophosphamide was used alone for conditioning for engraftment. ATG or ATS and procarbazine (PCB) were given. After transplant, methotrexate was given to ameliorate potential graft-versus-host disease.

Summary
Study included 17 females transplanted who had idiopathic etiology (severe aplastic anemia from an unknown cause). Diagnosis was made within 17 weeks. Initial, PMN range was 0-1500 (avg 200), 1-23 platelets (avg. 6k), .1-1.4 retriculocytes (avg. .1%), and 40-99 nonmyeloid marrow cells (avg. 85%).

26 patients received CY alone, 10 CY plus ATG and PCB in preparation for engraftment.

Immunosuppression began within 12-97 days after diagnosis (avg. 33 days). Delays in treatments were due to INCOMPATIBLE DONORS, WAITING FOR AN AVAILABLE BED, DIAGNOSIS, INFORMED CONSENT (OF PATIENT AND FAMILY).

36 patients were to be transplanted; 2 died of sepsis during pretransplant immunosuppression; 34 patients were transplanted; 67% (24) survived with complete marrow restoration after 4-20 months (median 9 months). Of the 24, 2 are severely limited by GVHD; all others returned to regular activities within 3-12 months after transplantation.

No correlation was made to age, sex, etiology of aplasia, transplant cnter or transplant regimen.

Of the 34 engrafted, 10 died: 4 from infection, 2 from sepsis GVHD, 1 pneumonia and sepsis, 1 tuberculosis; 9 rejected graft (1 died before second transplant, 7 were retransplanted and of those 5 died for transplant failure and 2 were successfully engrafted).

Of the 24 that were successfully transplanted, 12 died. Of those, 8 rejected their grants within 4-5 weeks of transplant, 1 lost marrow activity during adenine arabinoside therapy begun 23 days post-transplant for disseminated herpes zoster, and 1 died before a second transplant could be attempted. 7 patients who rejected their initial grafts were re-transplanted; 2 were success.

31 patients were not transplanted. 7 improved (1 completely, 5 partially, 1 partially temporarily). Responses were seen within 1 to 3 months post treatment. Responses were positive in all three cell lines, but compared to transplant patients the responses were lesser. 19 patients died within 1-11 months due to 10 hemorrahaging, 7 from sepsis, and 2 from a combination of hemorrhage and sepsis.

Within 4 months, 67% of transplanted patients survived while only 36% of non-transplanted patients did so. Within 12 months, 75% of transplanted patients survived while only 22% of non-transplanted patients did so. At month 20, 75% of transplanted patients were still surviving while 1 non-transplanted patient survived, but has relapsed after 4 months and remains aplastic.

Notably, they say that the quick transplant choice of the patient played a key role in survival, and patients who were immediately transplanted without a prior non-transplant treatment failure clearly had much higher survival rates.

Study did not evaluate the role of intensive support in the management of severe aplastic anemia that is required during pretransplant treatment and during the 2-3 week period of the transplanted marrow beginning to function after transplant.

Some transplanted patients remained in protective environments and received oral non-absorbable antibiotics.

In the Seattle study of 23 aplastic anemia patients who survived more than 1 year after allogeneic mrrow transplantation, only one patient died, one has chronic GVHD, and one has almost completely recovered from chronic GVHD. The OTHER 20 PATIENTS ARE IN GOOD HEALTH WITH NORMAL MARROW FUNCTION AFTER 2 TO 4.5 YEARS POST TRANSPLANT.

STUDY SHOWS THAT PROMPT BONE MARROW TRANSPLANTATION SIGNIFICANTLY DECREASES EARLY MORTALITY OF SEVERE APLASTIC ANEMIA.

Cardeza Foundation, Philadelphia
Children’s Hospital, Boston
Children’s Hospital, Los Angeles
Children’s Hospital, Milwaukee
Children’s Hospital, Philadelphia
Children’s Hospital, St. Louis
Emory University, Atlanta
Hammersmith Hospital, London
Hematology-Oncology Associates PA.,
Plainfield
Hematology-Oncology Associates,
Providence
James Whitcomb Riley Hospital,
Indianapolis
J. HilIis Miller Health Center,
Gainesville
Johns Hopkins Oncology Center,
Baltimore
Milwaukee County General Hospital
Mount Sinai Hospital, New York City
Naval Medical Center, Bethesda
New Jersey Medical School, Newark
Peter Bent Brigham Hospital, Boston
Rhode Island Hospital, Providence
San Francisco Medical Center
St. Jude Children’s Research Hospital,
Memphis
UCLA
University of Capetown
University of Minnesota, Minneapolis
University of Kentucky, Lexington
University of Washington, Seattle
Yale University, New Haven
West Side V.A. Hospital, Chicago
A. Erslev
B. Camitta, D. Nathan,
R. Parkman
S. Siegel
J. Casper
S. Friedman, E. Schwartz
R. Ducos, A. Ragab,
H. Zarkowsky
T. Heffner, J. Keller
E.C. Gordon-Smith
D. Fnimmer
R. Damico
R. Baehner, A. Provisor
T. Dellinger
G. Santos
A. Pisciotta
R. Taub, R. Zalusky
R. Cahill, R. Hartzman,
K. Sell
T. Walters
J. Rappeport
E. Forman
J. Klock, S. Shohet
R. Strauss
S. Feig, R. Gale
D. Dubovsky, P. Jacobs
J. Kersey, W. Knivit
M. Greenwood, P. Holland
ED. Thomas, R. Storb
S. McIntosh, R. O’Brien
R. Epstein, W. Fried
USPHS FR-00l28
USPHS AM-05581
Tommy Fund
USPHS 5-M0l-RR-00888
USPHS CA-l7995
ALSAC
USPHS CA-12800-
RR00865
Minnesota Medical
Foundation
SMF-155-75
USPHS CA-10895

Clinical Definition of Severe Aplastic Anemia

2009-10-15T19:48:00.001-05:00

Severe Aplastic Anemia is defined as follows:

Bone marrow cellularity < 25%, or marrow cellularity < 50% but with < 30% residual hematopoietic cells.

Two out of three of the following (in peripheral blood): neutrophils < 0.5 x 10^9/L; platelets < 20 x 10^9/L; reticulocytes < 20 x 10^9/L. SAA diagnostic criteria may be applied to assessment at initial diagnosis or to the follow-up assessments.

Allogeneic Stem Cell Transplant

2009-10-15T15:10:00.000-05:00

What is a stem cell transplant?

Most stem cells are in your bone marrow. You also have some that circulate from your marrow into your blood. Bone marrow stem cells turn into red blood cells, white blood cells, or platelets to help your body stay healthy. If your bone marrow is damaged or destroyed, it can no longer make normal blood cells. In a stem cell transplant, healthy stem cells are placed in your body through an IV to help your bone marrow start to work right.

When the stem cells come from another person, it is called an allogeneic transplant. The donor may be a relative or a complete stranger. The important thing is that the donor's immune system markers are closely matched to yours. This is more likely when the donor is your brother or sister.

When the stem cells come from your own blood or bone marrow, it is called an autologous transplant.

Stem cells can also be found in your bloodstream and in the blood inside a newborn's umbilical cord.

Aplastic Anemia References

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Ades L, Mary JY, Robin M, et al. Long-term outcome after bone marrow transplantation for severe aplastic anemia. Blood. 2004;103:2490-2497.

Bagby GC, Liptin JM, Sloand EM, Schiffer CA. Marrow failure. In Broudy VC, Berliner N, Larson RA, Leung LL, eds. Hematology 2004. American Society of Hematology Education Program Book. 318-336. Accessed at www.asheducationbook.org on June 20, 2005.

Broksky RA, Jones RJ. Aplastic anemia. Lancet 2005;365:1647-1656.

Rosenfeld S, Follmann D, Nunez O, Young NS. Antithymocyte globulin and cyclosporine for severe aplastic anemia: association between hematologic response and long-term outcome. JAMA. 2003; 289:1130-1135.

Young NS. Acquired aplastic anemia. Ann Intern Med 2002;136:534-546.

Young NS, Maciejewski J. The pathophysiology of acquired aplastic anemia. N Engl J Med. 1997;336:1365-1372.

Young NS, Calado RT, Scheinberg P. Current concepts in the pathophysiology and treatment of aplastic anemia. Blood. 2006 Oct 15;108:2509-2519.

Young NS, Maciejewski JP. Aplastic anemia. In: Hematology: Basic Principles and Practice. 5th edition. Hoffman R, Benz E Jr, Shattil S, Furie B, Silberstein L, McClave P, and Heslop H, editors. Philadelphia, PA. Elsevier, 2009: 359-383.

Brodsky RA. New insights into paroxysmal nocturnal hemoglobinuria. Hematology Am Soc Hematol Educ Program. 2006;24-8, 516.

Teramura M, Kimura A, Iwase S, Yonemura Y, Nakao S, Urabe A, Omine M, Mizoguchi H. Treatment of severe aplastic anemia with antithymocyte globulin and cyclosporin A with or without G-CSF in adults: a multicenter randomized study in Japan. Blood. 2007;110:1756-1761.

Castro-Malaspina, Hugo, and Richard J. O'Reilly. "Aplastic Anemia and Myelodysplastic Syndromes." In Harrison's Principles of Internal Medicine, ed. Anthony S. Fauci, et al. New York: McGraw-Hill, 1997.

Doney, Kristine, et al. "Primary Treatment of Acquired Aplastic Anemia: Outcomes with Bone Marrow Transplantation and Immunosuppressive Therapy." Annals of Internal Medicine 126 (15 Jan. 1997): 107+.

Young, Neal. "Aplastic Anaemia." The Lancet 346 (22 July 1995): 228+.

Young, Neal, and Jaroslaw Maciejewski. "The Pathophysiology of Acquired Aplastic Anemia." The New England Journal of Medicine 336 (8 May 1997): 1365+.

Aplastic Anemia Foundation of America. P.O. Box 613, Annapolis, MD 21404. (800) 747-2820. http://www.aplastic.org/.

http://bloodjournal.hematologylibrary.org/

Research In Treatments of Aplastic Anemia

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In addition to bone marrow transplants (the preferred method of treatment), supportive treatments and immune system suppression, advancements are being made in studies of the immune system to treat aplastic anemia.

Researchers are working to improve the drugs used for immunosuppression and stem cell transplantation. The goal is to find treatments that have fewer side effects than the present treatments with better results.

Studies Into Acquired (or Secondary) Aplastic Anemia
One drug under study is called daclizumab (Zenapax®). This is a monoclonal antibody (a laboratory-made antibody that attaches to specific substances) that blocks the action of interleukin-2 (IL-2). IL-2 is a normal part of the immune system that stimulates the immune response. Blocking IL-2 suppresses the immune system in a way different from ATG. Allergic reactions to this drug are rare. It is currently being used as a part of stem cell transplants, and is under study as a treatment for aplastic anemia.

Stem Cell Research To Treat Aplastic Anemia
Doctors are also trying to make stem cell transplants safer and more available. One approach is to use stem cells that come from the umbilical cord blood of newborns. This is a very rich source of stem cells. Efforts are being made nationwide to develop storage facilities for cord blood. The advantage of cord blood stem cells is that they may lead to less graft-versus-host disease. The disadvantage is that there may be too few cells to successfully "take." In one case, doctors have overcome this by transplanting cord blood stem cells from 2 separate donors. This has proven successful and may have an even lower risk of graft versus host disease. This method is currently under study.

Research for Inherited Aplastic Anemia
Researchers are also studying the possibility of using gene therapy to treat some inherited forms of aplastic anemia. Another approach is to give a drug called amifostine to help protect the bone marrow in children with Fanconi anemia.

When Transplant Treatments Fail

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Sometimes the first treatment isn't successful and will need to be repeated. Often the second treatment will be effective, even if the first wasn't. Also, the treatment may be only partially effective, and the blood counts may not return to normal. In this situation, many people can still lead a normal life and not need treatment. Their blood counts, although not normal, will be high enough for a normal life.

Aplastic Anemia Treatment

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This information represents the views of the doctors and nurses serving on the American Cancer Society's Cancer Information Database Editorial Board. These views are based on their interpretation of studies published in medical journals, as well as their own professional experience.

The treatment information in this document is not official policy of the Society and is not intended as medical advice to replace the expertise and judgment of your cancer care team. It is intended to help you and your family make informed decisions, together with your doctor.

Your doctor may have reasons for suggesting a treatment plan different from these general treatment options. Don't hesitate to ask him or her questions about your treatment options.

Treatment for aplastic anemia is either primary or supportive. Primary treatment is aimed at curing the disease. Common primary treatments are stem cell transplant and immune suppression. Supportive treatment is aimed at helping the symptoms of aplastic anemia without actually trying to cure it. Treating anemia with transfusions is a type of supportive treatment.

Primary treatment

Allogeneic stem cell transplant

Allogeneic stem cell transplant is considered the best treatment for younger people with aplastic anemia. Transplantation works best in children and young adults. As people get older, it's harder for them to tolerate this procedure. For people older than 30 or 40, many doctors prefer using immune therapy as the first treatment. In order for transplant to be an option, you need to have a donor who is matched to you. Someone who is closely related to you, like a brother or sister, is generally the best choice. In aplastic anemia, this stem cell transplant is successful up to 80% to 90% of the time if cells from a matched related donor are used.

Matching is determined by a type of test called HLA typing, which is done in the laboratory. If there is no match from a brother or sister, sometimes an unrelated donor will match. A transplant from a matched-unrelated donor is riskier than using a sibling match. Another option is to use stem cells from the umbilical cord of a newborn baby. A nationwide registry of potential stem cell donors and stored umbilical cord blood has been developed (www.marrow.org). Many doctors recommend using a non-related donor only if immune treatments described below don't work.

For a stem cell transplant, you will first receive chemotherapy. The chemotherapy drugs used most often include cyclophosphamide (Cytoxan®) and fludarabine (Fludara®). A drug to suppress your immune system, like anti-thymocyte globulin (ATG) or alemtuzumab (Campath®), is also given. A newer drug, daclizumab (Zenapax®), may also be used. This immune treatment is important to keep your immune system from killing the new bone marrow (like it killed your original bone marrow). Immune treatment is also important to prevent the new bone marrow from attacking your body (this is called graft-versus-host disease and is discussed later in this section). You may also get a low dose of radiation therapy to your whole body.

Soon after the radiation and/or chemotherapy, you will receive a transfusion with blood-forming stem cells from a donor. The stem cells can be obtained from the donor by removing bone marrow in the operating room while he or she is under general anesthesia. Sometimes a procedure called apheresis is used to remove stem cells from the bloodstream. Apheresis uses a machine that is hooked up to a large vein (through a catheter) and removes stem cells from the blood (returning the other cells). No matter which way they are collected, the stem cells are infused through your vein into the blood and then travel to the bone marrow, where they will grow

Stem cell transplantation is a major procedure with many risks and side effects. Some people may die during this procedure. The most serious side effects often occur during the first few weeks after the transplant. But with advances in this treatment, death from these early side effects is less common. The chance of severe side effects increases with the age of the patient.

In the first few weeks after the transplant there are usually side effects from the chemotherapy or radiation therapy. Very low blood counts requiring red blood cell and platelet transfusions are common. You may develop nausea, vomiting, diarrhea, and mouth sores from the treatment. Serious infections can also occur and are treated with large doses of antibiotics. These all generally go away in 3 to 4 weeks when the transplanted blood-forming stem cells start to produce normal blood cells. If ATG is used, there is also a risk of serious allergic reactions during the infusion. These reactions can range from skin rashes to low blood pressure and problems breathing. Generally, these side effects can be controlled with medicines. This is discussed in more detail in the next section.

A very serious side effect of a stem cell transplant is graft-versus-host disease (GVHD). This occurs when the transplanted donor cells attack your own cells through an immune reaction. GVHD is more common with unrelated or mismatched donors. The risk of GVHD is also higher in older patients. GVHD can occur very early after the transplant. This is called acute GVHD. When GVHD develops later on or lasts a long time it is called chronic GVHD. Early signs of GVHD include skin rashes with severe itching and bowel disturbances such as diarrhea. There may be abnormal lab tests showing liver damage. GVHD is treated with medications (like prednisone, methotrexate, or tacrolimus) to try to suppress the immune system. In some cases, GVHD goes away and the medications can be stopped. In other cases, GVHD is only partly controlled, and medications are needed for a long time. GVHD can sometimes be very disabling and occasionally even cause death.

For more information, please see our document, Bone Marrow and Peripheral Blood Stem Cell Transplants.

Immunosuppressive therapy

If you are not able to have a transplant (because of age or because you do not have a matched donor), doctors will recommend immunosuppressive treatment. Most cases of acquired aplastic anemia are caused by the immune system attacking the bone marrow. This treatment helps stop the immune system from killing the bone marrow cells. This type of treatment is not usually helpful for cases of inherited aplastic anemia because they are not caused by the immune system.

The major drugs used are antithymocyte globulin (ATG) and cyclosporine. ATG contains antibodies against human T-lymphocytes. This medicine is given in the hospital through an intravenous (IV) line. ATG decreases (suppresses) your immune system function by lowering the number of T-cells in the body. The antibodies in ATG come from an animal (like a horse or a rabbit), so there is a risk of a serious allergic reaction when the ATG is given. Sometimes patients getting ATG also receive a corticosteroid medicine (like prednisone) to reduce the chance that a serious reaction will occur. A newer drug, alemtuzumab (Campath®), is sometimes used instead of ATG. It has a lower risk of serious allergic reactions, but doctors aren't sure that it works as well as ATG. Often the drug called cyclosporine is given as well. This drug suppresses the immune system. Combining ATG and cyclosporine improves the blood counts in about 70% of patients with the most severe disease. The aplastic anemia may not actually be cured in most of these patients. Still, even when the blood counts do not become completely normal, they often improve enough for the patient to feel well and live a normal life. Often, after a period of remission, the aplastic anemia will come back. Usually, it will respond again to immune treatment, which can be safely repeated.

Some doctors now also give a drug called G-CSF along with ATG and cyclosporine. This drug is a growth factor for white blood cells -- it tells the bone marrow to make more of these cells. It is also known as filgrastim or Neupogen. Studies looking to see if G-CSF is helpful when given with immune therapy are ongoing.

Using high doses of cyclophosphamide (Cytoxan®) for immunosuppression is controversial. Cyclophosphamide is a chemotherapy drug that can suppress the immune system and damage T-lymphocytes. Although this treatment can be effective, many experts believe that it is more dangerous than ATG. Most doctors in the United States prefer to delay using cyclophosphamide until ATG and cyclosporine are no longer working.

Immunosuppressive therapy can have serious side effects. Holding back the immune system impairs the body's ability to fight infection. People on immunosuppression can get life-threatening infections with bacteria, viruses, and fungi. The drugs used in this therapy also have serious side effects. For example, ATG can cause serious allergic reactions with symptoms including skin rashes, low blood pressure, and problems breathing. Generally, these side effects can be controlled with medicines. Also, about 15% of patients develop leukemia or myelodysplasia several years after getting ATG. Myelodysplasia is a disorder of the bone marrow that is similar to leukemia (see the American Cancer Society document, Myelodysplastic Syndromes). Side effects of cyclosporine include high blood pressure as well as kidney and liver damage. To help prevent these problems, the doctor will check the level of cyclosporine in the blood regularly. Blood tests will also be done to check kidney and liver function. Corticosteroids (like prednisone) can cause increases in blood sugar (like diabetes), high blood pressure, weight gain, changes in mood, and weak bones.

Supportive treatment

Transfusion

While your blood counts are low, you may need transfusions of red blood cells or platelets. Although blood transfusions are generally safe, their long-term use creates problems. The main problem is that the red cells contain iron. The transfused cells only live a few weeks and iron from these cells builds up in the body. Eventually this will result in a high level of body iron, which is toxic. Although this can be treated with drugs, these aren't always successful and some organs, mainly the liver and heart, can become damaged. Also, getting tranfusions before a stem cell transplant increases the chance that the transplant won't work. This is why doctors avoid giving transfusions when a transplant is planned.

Antibiotics

Because of your low white blood cell count, you may develop an infection and need antibiotics. Infection is the major cause of death from aplastic anemia. Treatment with antibiotics should be started as soon as infection is suspected. Transfusing white blood cells is not generally practical. They survive only a very short time, and it is not possible to get enough white blood cells from normal donors to raise a person's white blood cell count.

Growth factors

Drugs can be given to increase the white blood cell count. These are called filgrastim (also called G-CSF or Neupogen®), pegfilgrastim (Neulasta®), and sargramostim (also called GM-CSF or Leukine®). These work only slightly for most patients with aplastic anemia.

Androgens

Some patients with early or mild aplastic anemia can be treated with androgens (instead of stem cell transplantation or ATG). Androgens are often the first treatment given to patients with inherited forms of aplastic anemia (like Fanconi anemia and dyskeratosis congenita). Androgens are male sex hormones that also stimulate blood production. They are the reason that men have higher red blood cell counts than do women. Although they can be effective in improving blood counts, they do not cure aplastic anemia. Also, using androgens for a long time has been linked to liver tumors and liver cancer. Androgens are male hormones, so women taking this medicine can develop masculine characteristics such as facial hair, balding, deepening voice, etc.

General considerations in treating aplastic anemia

Many years ago, aplastic anemia was considered a fatal disease unless the patient recovered without treatment (spontaneously). Now that we understand this is often an immune disease, treatments have been devised that have a high success rate.

Children with inherited causes of aplastic anemia are treated with supportive therapy (such as androgens) and stem cell transplant. Immunosuppressants don't help these patients.

Those with acquired aplastic anemia are treated with supportive care, followed by immunesuppressant therapy or stem cell transplant. Stem cell transplant is preferred when the patient has a matched, related donor, and is young and otherwise healthy. Immune treatments may be the first option for older patients and those without a matched donor.

A small number of people with aplastic anemia will develop leukemia or other cancers after several years. But it isn't clear if this is caused by the treatment, or just part of the disease itself. For example, many people with Fanconi anemia who don't get aplastic anemia, will still go on to develop leukemia.

Aplastic anemia is rare, and treating it is very specialized, so it may best be done at a major medical center where they have experience with this disease. This is particularly true for stem cell transplants.

Sometimes the first treatment isn't successful and will need to be repeated. Often the second treatment will be effective, even if the first wasn't. Also, the treatment may be only partially effective, and the blood counts may not return to normal. In this situation, many people can still lead a normal life and not need treatment. Their blood counts, although not normal, will be high enough for a normal life.

Sometimes, none of the treatments is successful. In this case a person with aplastic anemia might want to consider taking part in a clinical trial, that is, a study of a new therapy that hasn't yet been proven successful.

Adapted in part or whole from the American Cancer Society website.

Bone Marrow Transplants

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The bone marrow—the sponge-like tissue found in the center of certain bones—contains stem cells that are the precursors of white blood cells, red blood cells, and platelets. These blood cells are vital for normal body functions, such as oxygen transport, defense against infection and disease, and clotting. Blood cells have a limited lifespan and are constantly being replaced; therefore, healthy stem cells are vital.

In association with certain diseases, stem cells may produce too many, too few, or otherwise abnormal blood cells. Also, medical treatments may destroy stem cells or alter blood cell production. The resultant blood cell abnormalities can be life threatening.

There are three types of bone marrow transplants:

Bone marrow transplantation involves extracting bone marrow containing normal stem cells from a healthy donor, and transferring it to a recipient whose body cannot manufacture proper quantities of normal blood cells. The goal of the transplant is to rebuild the recipient's blood cells and immune system and hopefully cure the underlying ailment.

Aplastic Anemia

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Aplastic anemia is a disorder in which the bone marrow greatly decreases or stops production of blood cells.

Description
The bone marrow (soft tissue which is located within the hard outer shell of the bones) is responsible for the production of all the types of blood cells. The mature forms of these cells include red blood cells, which carry oxygen throughout the body; white blood cells, which fight infection; and platelets, which are involved in clotting.

In aplastic anemia, the basic structure of the marrow becomes abnormal, and those cells responsible for generating blood cells (hematopoietic cells) are greatly decreased in number or absent. These hematopoietic cells are replaced by large quantities of fat.

Yearly, aplastic anemia strikes about 20,000-30,000 people, or 5-10 people in every one million. Although aplastic anemia strikes both males and females of all ages, there are two age groups that have an increased risk. Both young adults (between 15-30 years of age) and the elderly (over the age of 60) have higher rates of aplastic anemia than the general population. While the disorder occurs worldwide, young adults in Asia have a higher disease rate than do populations in North America and Europe.

Causes and symptoms
Aplastic anemia falls into three basic categories, based on the origin of its cause: idiopathic, acquired, and hereditary. In about (50% to) 60% of cases, aplastic anemia is considered to be idiopathic, meaning that the cause of the disorder is unknown.

Acquired Aplastic Anemia
Acquired aplastic anemia refers to those cases where certain environmental factors and physical conditions seem to be associated with development of the disease. Acquired aplastic anemia can be associated with:

exposure to drugs, especially anti-cancer agents, antibiotics, anti-inflammatory agents, seizure medications, and antithyroid drugs (drugs given to stop the functioning of an overactive thyroid)
exposure to radiation
chemical exposure (especially to the organic solvent benzene and certain insecticides)
infection with certain viruses (especially those causing viral hepatitis, as well as Epstein-Barr virus, parvovirus, and HIV, the virus which can cause AIDS)
pregnancy
certain other disorders, including a disease called paroxysmal nocturnal hemoglobinuria, an autoimmune reaction called graft-vs-host disease (which occurs when the body's immune system attacks and destroys the body's own cells), and certain connective tissue diseases

Hereditary Aplastic Anemia
Hereditary aplastic anemia is relatively rare, but does occur in Fanconi's anemia, Shwachman-Diamond syndrome, and dyskeratosis congenita.

Symptoms
Symptoms of aplastic anemia tend to be those of other anemias, including fatigue, weakness, tiny reddish-purple marks (petechiae) on the skin (evidence of pinpoint hemorrhages into the skin), evidence of abnormal bruising, and bleeding from the gums, nose, intestine, or vagina. The patient is likely to appear pale. If the anemia progresses, decreased oxygen circulating in the blood may lead to an increase in heart rate and the sudden appearance of a new heart murmur.

Prognosis
Aplastic anemia is a life-threatening illness. Without treatment, it will almost surely progress to death. Survival depends on how severe the disease is at diagnosis, which type of treatment a patient is eligible for, and what kind of response their body has to that treatment. The worst-prognosis type of aplastic anemia is one associated with very low numbers of a particular type of white blood cell. These patients have a high chance of dying from overwhelming bacterial infections. In fact, 80% of all patients treated with blood transfusions alone die within 18 months to two years. Patients who undergo bone marrow transplantation have a 60-90% chance of being cured of the disease.

BOOKS:
Castro-Malaspina, Hugo, and Richard J. O'Reilly. "Aplastic Anemia and Myelodysplastic Syndromes." In Harrison's Principles of Internal Medicine, ed. Anthony S. Fauci, et al. New York: McGraw-Hill, 1997.

PERIODICALS:
Doney, Kristine, et al. "Primary Treatment of Acquired Aplastic Anemia: Outcomes with Bone Marrow Transplantation and Immunosuppressive Therapy." Annals of Internal Medicine 126 (15 Jan. 1997): 107+.

Young, Neal. "Aplastic Anaemia." The Lancet 346 (22 July 1995): 228+.

Young, Neal, and Jaroslaw Maciejewski. "The Pathophysiology of Acquired Aplastic Anemia." The New England Journal of Medicine 336 (8 May 1997): 1365+.

ORGANIZATIONS:

Aplastic Anemia Foundation of America. P.O. Box 613, Annapolis, MD 21404. (800) 747-2820. http://www.aplastic.org/.

GLOSSARY:
Bone marrow—A substance found in the cavities of bones, especially the long bones and the sternum (breast bone). The bone marrow contains those cells which are responsible for the production of the blood cells (red blood cells, white blood cells, and platelets).

Bone marrow transplant—A procedure in which a quantity of bone marrow is extracted through a needle from a donor, and then passed into a patient to replace the patient's diseased or absent bone marrow.

Hematopoietic cells—Those cells which are lodged within the bone marrow, and which are responsible for producing the cells which circulate in the blood (red blood cells, white blood cells, and platelets).

Bone Marrow Aspiration

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A bone marrow aspiration occurs when a medical profession withdraws liquid from within the bone.

Treatment

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In secondary aplastic anemia, removing the cause is critical. In some cases it can lead to recovery.

Mild Aplastic Anemia
Mild cases of aplastic anemia may be treated with supportive care, or may not need treatment. Blood and platelet transfusions will help correct the abnormal blood counts and relieve some symptoms in moderate cases.

Mild Aplastic Anemia
Severe aplastic anemia, which causes a very low blood-cell count, is a life-threatening condition. Younger patients with a severe case of the disease will need a bone marrow transplant. Older patients, or those who do not have a matched bone marrow donor, can be treated with medications that suppress the immune system, such as antithymocyte globulin (ATG), tacrolimus, or cyclosporine.

ATG - Antithymocyte Globulin
ATG consists of antibodies made in horses or rabbits against a type of white blood cell in humans called T cells. It is used to suppress the body's immune system, allowing the bone marrow to start generating blood cells again.

Cyclosporine, Cytoxan
Other medications to suppress the immune system, such as cyclosporine, tacrolimus, and cyclophosphamide (Cytoxan) also may be used. Corticosteroids and androgens have been used as well.

http://healthtools.aarp.org/adamcontent/secondary-aplastic-anemia

Causes Of Aplastic Anemia

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50% of the people diagnosed with aplastic anemia do not know the cause, nor is the cause ever determined. When the cause is unknown, it is referred to as idiopathic aplastic anemia. The other half can trace the disease back to one of the following causes:

Exposure to insecticides
Exposure to pesticides
Exposure to chemical toxins
Ingestation of arsenic
Certain drugs
Chemotherapy
Disorders present at birth (congenital disorders)
Drug therapy to suppress the immune system
Pregnancy
Radiation therapy
Toxins such as benzene or arsenic

Bone Marrow Biopsy

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What is a bone marrow biopsy? It is the extraction of a segment of bone and tissue usually taken from the hip area (alternatively from the breast bone area) along with an aspiration of the fluid within the bone.

In most situations, the area at which the biopsy will be performed is numbed, a small incision is made in the skin, and numbing medication is inserted into the body gradually numbing deeper with each new needle insertion.

Once numb, a tool is inserted into the incision and worked downward toward the bone, and then screwed into the bone into the marrow. A biopsy of the bone and marrow are extracted, and an aspiration of the marrow liquid is taken.

No stitches are needed, but a bandage is placed over the incision which must remain there for 24 hours. Until the incision is healed, the patient may not sit in water (includes baths, pools, lakes, etc.).

Afterwards, the patient may feel discomfort with the biopsy area, but no other effects are common.

In situations in which a donor is donating bone marrow, the donor is placed under general anesthia before the procedure begins. Commonly, three incisions are made on each side of the hip, each incision about 2 cm. A sufficient number of bone marrow biopsies are then performed through the tiny incisions, and in most cases the bone marrow (blood stem cells) are immediately fed into the recipient's body.

Biologics: New Miracle Drugs

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Biologics are considered the new miracle drugs. Radical recoveries are giving biologics a much-hyped reputation as miracle drugs. Biologic medicines are now the fastest-growing class of drugs in the pharmaceutical world; Avastin alone garnered nearly $3 billion in sales in 2008. Many patients today survive cancers once considered a death sentence, and those who suffer from autoimmune diseases such as multiple sclerosis or rheumatoid arthritis can regain full use of limbs once racked by crippling pain and immobility.

What makes biologic medicines unique is this: unlike conventional chemical drugs, biologics are produced by being grown inside living organisms, and specifically target human proteins that are involved in disease.

One class of biologics—known as monoclonal antibody biologics—are similar to the antibodies that the human immune system uses to fight off bacteria and viruses, only these antibodies are genetically engineered to target specific cancers.

Avastin is now also widely used to treat lung, breast, colon, and rectal cancers. Other monoclonal antibody biologics are designed to attack certain proteins (or protein receptors) on the surface of cancer cells and stop their growth. Examples of such protein inhibitors include Rituxan, which is used to treat lymphomas, and Herceptin.

Other biologics alter the function of the immune system by either suppressing or enhancing certain responses. In autoimmune diseases such as rheumatoid arthritis and psoriasis, for example, the immune system overproduces a protein that triggers a buildup of white blood cells, which leads to excessive inflammation and joint damage. Enbrel, Humira, Remicade, and other biologics in this class target that protein, called the tumor necrosis factor, and block its action. Tysabri, a biologic used to treat multiple sclerosis and Crohn's disease, blocks the passage of inflammatory cells into the brain and the spinal cord—and, in the case of Crohn's disease, into the intestines.

"These biologic agents provide a degree of selectivity not achievable with conventional chemotherapy drugs," explains oncologist Oliver Press, M.D., Ph.D., of the Fred Hutchinson Cancer Research Center in Seattle. "Many of [the biologics] can produce dramatic antitumor effects without the toxicity that historically has been associated with chemotherapy and radiation."

Biologic treatments date back to 1982, when recombinant insulin was first approved in the United States for the treatment of diabetes. (A hormone originally derived from the pancreas of animals, insulin is today made synthetically from genetically engineered human bacteria.) Since then, more than 300 biologic drugs, most of them developed in the past five years, have flooded the pharmaceutical market. Today they constitute roughly 25 percent of all new drugs approved by the FDA; by 2014, industry insiders predict, more than half of the top 100 drugs will be biologics.

Biologic treatments are very expensive. A push is on to develop generic drugs.
http://www.aarp.org/health/conditions/biologics/

AARP: Biologic Drugs

Donor Matching HLA Test

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Transplants rely upon matching donors to the recipient. For bone marrow transplants, basically, there are 6 key factors analyzed for a match. They are classified as Class 1 and Class 2 HLA markers: Class 1 (A, B, C) and Class 2 (DR, DQ, DP). For a match, the first 4 HLA markers must match, being A, B, C and DR. Matching DQ is beneficial, but not necessary. Matching DP is a bonus.

From a medical standpoint, there are 8 key factors in the matching process.

Class 1 A, HLA Locus A - must be matched
Class 1 B, HLA Locus B - must be matched
Class 1 C, HLA Locus C - must be matched
DR A - need not be matched
DR B 1 - must be matched
DR B 3, 4, 5 - patient is typed, need not be matched
DQ A 1 - need not be matched
DQ B 1 - uncertain whether matching improves success
DP A 1 - need not be matched
DP B 1 -uncertain whether matching improves success

For more information, refer to http://www.marrow.org/PHYSICIAN/Adv_in_Auto_Allo_Tx/Adv_in_HLA_Typing/index.html

Donor Matching - Private Typing

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Getting Tested : Pricing and Kit Ordering

** All test turnaround times are from receipt of sample at laboratory and do not include weekends/holidays.

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HLA- A,B,DR (Class I and II) STANDARD

TURNAROUND of 7-10 business days. $175.00

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HLA- A,B,DR (Class I and II) STAT

TURNAROUND of 2-4 business days. $375.00

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Price Includes:

■Shipping and handling to the donor and back to the lab of the sample. Once shipped from Kashi Clinical Laboratories, the kit will take approximately 2-4 business days for delivery. A return pre-paid air bill with mailing envelope for the return of the sample to the lab. **See alternate shipping methods below.

■All supplies, testing for the designated HLA antigens, Preparation and/or hard copy of test results. The report can also be faxed or mailed to a search coordinator or personal physician that you designate on our "Private Testing Requisition"
■A hard copy of the results sent to the donor for his/her own medical records.

**Alternate Shipping Methods:

■Priority Overnight: please add $35 per kit.
■International Shipping: please add $150.00 per order.
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IMPORTANT:
Approximately 20% of all samples may require additional testing in the form of a "repeat" test or "high-resolution" test. This is not the fault of the donor but possibly the manner in which the sample was collected or shipped, or additional testing is required in order to resolve specific serological ambiguities. This re-test will delay results past the original time quoted. Kashi Clinical Laboratories does not refund testing fees or accept any liability if this condition delays results or complete typing cannot be obtained from the sample submitted.

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RETURN POLICY:

No returns on donor kits. Credit can be applied to buyer's credit card if extenuating circumstances prevent donation and only within 60 days of purchase. A 25% handling charge applies and will be deducted from any credit.

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ALL CREDITS MUST BE PRE-AUTHORIZED

by calling 1-877-527-4452.

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For additional information about testing, you can contact us at 1-877-527-4452 between 8:30 a.m. and 5:00 p.m. Pacific Standard Time.

HLA Tissue Typing

2009-10-15T13:05:00.001-05:00

The HLA gene products can be grouped into three classes. Class I consists of the products of the genes located on the HLA-A, HLA-B, and HLA-C loci. These HLA antigens are found on all nucleated cells. Class II molecules consist of antigens inherited as genes from the HLA-DR, HLA-DQ, and HLA-DP loci. These HLA antigens are normally found only on B-lymphocytes, macrophages, monocytes, dendritic cells, endothelial cells, and activated T-lymphocytes. Class III molecules are not evaluated in histocompatibility testing.

Because the HLA loci are closely linked, the HLA antigens are inherited as a group of six antigens is called a haplotype. The probability of siblings having identical haplotypes is one in four. Therefore, siblings provide the opportunity for the best matches. They can donate bone marrow, a kidney, and a section of their livers, but they cannot donate other solid organs. Approximately 85% of transplants are organs from cadavers, and because the HLA antigens are so highly polymorphic, the chance of identical haplotypes decreases quickly.

Histocompatibility testing consists of three tests, HLA antigen typing (tissue typing), screening of the recipient for anti-HLA antibodies (antibody screen), and the lymphocyte crossmatch (compatibility test). HLA antigen typing may be performed by serological or DNA methods.

A laboratory will perform HLA typing by either the serological (blood fluid) or DNA method. In either case, HLA typing of HLA-A, HLA-B, HLA-DR, and HLADQ antigens is performed for solid organ transplants. HLA typing of HLA-C antigens is also included when tissue typing is performed for bone marrow transplants.

The antibody screen is performed in order to detect antibodies in the recipient's serum that react with HLA antigens. The most commonly used method of HLA antibody screening is the microcytotoxicity test. If an antibody against an HLA antigen is present, it will bind to the cells. The higher the number of different HLA antibodies, the lower the probability of finding a compatible match.

The third component of a histocompatibility study is the crossmatch test. In this test peripheral blood lymphocytes from the donor are separated into B and T lymphocyte populations. In the crossmatch, serum from the recipient is mixed with T-cells or B-cells from the donor. A positive finding indicates the presence of preformed antibodies in the recipient that are reactive against the donor tissues. An incompatible T-cell crossmatch contraindicates transplantation of a tissue from the T-cell donor.

Read more: http://www.surgeryencyclopedia.com/Fi-La/Human-Leukocyte-Antigen-Test.html#ixzz0U1qXSSPR

Blood Transfusions Preliminary To Transplants

2009-10-15T12:59:00.000-05:00

Blood transfusions preliminary to transplants can cause issues with the transplant due to the antigens fed into the recipient from the donor blood. HLA type matching is not done preliminary to blood transfusions.

When you get a blood transfusion, you only get red blood cells. Whole blood transfusions haven't been done in many, many years. A donated unit of blood is "spun down" and separated into three layers: Bottom is Red Blood Cells, thin layer is WBCs and platelets, and top liquid is plasma. The plasma is frozen, and platelets can be harvested from the thin layer, so nothing goes to waste.

That said, it is possible then when they separate the two, they don't squeeze off all of the WBC layer. You can ask for Leuko-poor packed RBCs. They have a filter that goes between you and the unit, and "strains" out the much bigger white cells.

Read more: http://www.surgeryencyclopedia.com/Fi-La/Human-Leukocyte-Antigen-Test.html#ixzz0U1p5btRn

Bone Marrow Transplants See Positive Improvements

2009-10-15T12:51:00.000-05:00

http://health.usnews.com/usnews/health/healthday/080323/a-bone-marrow-disease-with-a-brighter-prognosis.htm

There's hope: Considered fatal as recently as two decades ago, aplastic anemia is becoming a far more manageable disease. Advances in drug therapies and improvements in the field of transplantation have slashed the death toll, allowing patients to live longer, fuller lives.

"We are getting better at treating aplastic anemia, either in getting rid of it or treating its symptoms," said Dr. Jaroslaw P. Maciejewski, with the Cleveland Clinic's Department of Hematologic Oncology and Blood Disorders.

Graph Host Disease

2009-10-15T12:38:00.000-05:00

Graft rejection occurs when the immune cells (T-lymphocytes) of the recipient recognize specific HLA antigens on the donor's organ as foreign. The T-lymphocytes initiate a cellular immune response that result in graft rejection. Alternatively, T-lymphocytes present in the grafted tissue may recognize the host tissues as foreign and produce a cell-mediated immune response against the recipient. This is called graft versus host disease (GVHD), and it can lead to life-threatening systemic damage in the recipient. Human leukocyte antigen testing is performed to reduce the probability of both rejection and GVHD.

Read more: http://www.surgeryencyclopedia.com/Fi-La/Human-Leukocyte-Antigen-Test.html#ixzz0U1MCXHTo

Bone Marrow Transplant Outcomes & Results

2009-10-15T03:46:00.003-05:00

Several factors are involved in any successful transplant, but none more important than having a donor, having that donor be an excellent match, and remaining infection free.

Bone Marrow Donors
The ideal donor is an identical male twin, and then an identical female twin. Next, a male sibling, then a female sibling. Next, a non-related male donor, then a non-related female donor. Next, a non-related male donor, then a non-related female donor. If no match is found within those groups, then testing is conducted on related donors, and if all attempts to find a donor fail, the transplant team will resort to blood stems from donor cords and parents.

http://www.marrow.org/PHYSICIAN/Tx_Indications_Timing_Referral/Tx_Outcomes_by_Disease_and_Dis/index.html#other

When siblings do not match, private potential donors will be considered. If you would like to donate to a particular person, the following website offers kits to begin the screening process: https://www.bonemarrowtest.com/pricingandkitordering.htm.

If you wish to register with the national registry to donate to anyone with whom your marrow is matched, please visit http://www.marrow.org/.

Transplant Outcomes
The outcome of a transplant depends greatly on the level of matching between the donor and the patient, and then upon the age of the patient at the time of the transplant.

Bone Marrow Typing

2009-10-15T03:17:00.000-05:00

What is bone marrow typing?
Bone marrow typing is the processs of identifying the HLA - human leukocyte antigen - markers on blood cells. During the typing process, proteins on blood cells are analyzed. To obtain the tissue samples for analysis, a blood draw is taken from the patient and the potential donors.

The human leukocyte antigen (HLA) test, also known as HLA typing or tissue typing, identifies antigens on the white blood cells (WBCs) that determine tissue compatibility for organ transplantation (that is, histocompatibility testing). There are six loci on chromosome 6, where the genes that produce HLA antigens are inherited: HLA-A, HLA-B, HLA-C, HLA-DR, HLA-DQ, and HLA-DP.

Currently, medical teams seek to match 4 of the 6 markers: Class 1 A, B and C, along with Class 2 DR loci. DQ matching is preferable, but not mandatory. DP matching is beneficial, but also not required.

Unlike most blood group antigens, which are inherited as products of two alleles (types of gene that occupy the same site on a chromosome), many different alleles can be inherited at each of the HLA loci. These are defined by antibodies (antisera) that recognize specific HLA antigens, or by DNA probes that recognize the HLA allele. Using specific antibodies, 26 HLA-A alleles, 59 HLA-B alleles, 10 HLA-C alleles, 26 HLA-D alleles, 22 HLA-DR alleles, nine HLA-DQ alleles, and six HLA-DP alleles can be recognized. This high degree of genetic variability (polymorphism) makes finding compatible organs more difficult than finding compatible blood for transfusion.

Read more: http://www.surgeryencyclopedia.com/Fi-La/Human-Leukocyte-Antigen-Test.html#ixzz0TyvXKnQG

Private Typing
If you wish to register to donate to any matched recipient, then the national registry is the route to go to begin typing your tissue. If however, you wish to be tested for a match to a particular donor, then the following source should be used:

https://www.bonemarrowtest.com/pricingandkitordering.htm

Potential Donors - Am I a donor? Can I be a donor?

2009-10-14T16:17:00.002-05:00

When it is determined that a bone marrow transplant should or will take place, the next step is to find a suitable donor. The primary candidates for a suitable donor are the siblings of the intended recipient. There is a 25% chance of each sibling matching. If a sibling does not match, then the next step is to go to the National Bone Marrow Registry to seek a donor. Information about the process of donating, how bone marrow is matched and how to be a donor is provided below.

Listed Potential Donors
If you have been listed as a potential donor for a person who will need a bone marrow transplant, that person's cancer team will direct you to the appropriate facility for collection of your blood sample or buckle test (cheek swab), typing and communication of your typing. They will likely call you shortly after a determination has been made that a bone marrow transplant either is or may be done. They will give you the name and address of the location to which they want you to go to. When you arrive, they will process your paperwork, confirming your identity and proceed to take a sample of your blood or a swab sample from the incide of your cheek (buckle test). In almost all instances, it will be the original cancer team that will contact you to inform you of whether you are a bone marrow match.

Unlisted Potential Donors
If you are not listed as a potential donor on the recipient's donor list, it is likely because you are not the potential recipient's sibling; only siblings are listed and contacted in the first steps of seeking a matched donor. If a sibling does not match, then the next step is to seek a donor from the national registry, or if there are people who want to be considered as a donor then from their results.

Can I Be A Donor?
Perhaps. There are two types of donors - those who want to donate to a particular person, and those who want to donote to anyone with whom they match. The type of donor you wish to be determines the method for your testing.

Anonymous Donors Registry
If you wish to become a registered donor with the national registry, which would include being assessed for your desired recipient if time permits for your results to be entered into the national database in time for your intended recipient's search. The national registry process takes more time to process donor information, so that must be taken into consideration. But the national registry is free. The process is quite simple. You register, answer a few health questions for preliminary acceptance, and ask that a kit be sent to you; you swab the inside of your cheek, send the results back, and are listed in the registry. IF YOU WANT TO USE THE FREE SERVICES OF THE REGISTRY, BE SURE TO ASK THAT YOUR RESULTS BE MAILED TO YOU AS WELL AS ADDED TO THE REGISTRY. Remember, that listing with the national registry is a committment on your part stating that you will donate to anyone if asked. For private matching, please see private matching below. More information about the national registry is available at their website, http://www.marrow.org/.

In all instances, the testing process through the registry is free. If you are an intended recipient's sibling, it is very likely that the recipient's insurance company will cover the costs of the test.

Private Bone Marrow Donor Matching
If you wish to be tested for matching to a particular intended recipient, then the national registry is not the way to go. Rather, you should seek information on the website, http://www.bonemarrowtest.com/.

To be tested to match a particular intended recipient, you will need to find a collection center near you. Because the HL Testing process is unique, it is not done by most doctors or hospitals.

The second step is to ask your insurance company if they will cover the costs for you to be tested for an intended recipient (in most cases, they won't if you are not a sibling). The cost of the test is dependant upon the type of HLA test being conducted. In the preliminary testing process, it would likely be sufficient to test for Class 1 AB HLA Matching. If those two factors match, you can then be tested for the subsequent factors (Class 1 C, Class 2 DR, DQ and DP). If time is of the essence, you may want to be tested for Class 1 ABC, Class 2 DR; and if cost is not a factor for an additional one test, then also DQ; and lastly, if it is not cost prohibitive, then for DP.

Be sure to ask that your results be mailed to you. When you receive them, you can then fax them to the coordinator for the intended recipient's bone marrow matching.

See Bone Marrow Matching for more information.

Blood Type & Bone Marrow Transplants

2009-10-14T13:59:00.000-05:00

Blood types do not matter, and are not used in the bone marrow matching process; before marrow is transplanted, existing bone marrow and blood stem cells are destroyed. During marrow transplants, new blood stem cells are interveneously injected into the bloodstream of the recipient to make their way into the marrow. Remaining blood cells in the recipient die off within hours of the initiation of a transplant (as they were radiated prior to the transplant). The transplanted marrow then builds new blood stem cells, and in some situations the recipient's blood type will change.

Cytoxan

2009-10-14T04:19:00.001-05:00

Using high doses of cyclophosphamide (Cytoxan®) for immunosuppression is controversial. Cyclophosphamide is a chemotherapy drug that can suppress the immune system and damage T-lymphocytes. Although this treatment can be effective, many experts believe that it is more dangerous than ATG. Most doctors in the United States prefer to delay using cyclophosphamide until ATG and cyclosporine are no longer working.

Allogeneic Transplants

2009-10-14T03:19:00.000-05:00

An allogeneic transplant is a transplant that comes from another person.

Bone Marrow or Stem Cell Transplant

Stem cells are cells in the bone marrow (the spongy, liquid center of certain bones) that constantly make blood cells for the body. Stem cell transplants are used to restock the bone marrow when it has been destroyed by chemotherapy, radiation, or disease. Stem cells can be taken from bone marrow or blood. Stem cells may be the patient's own (autologous), or they may come from someone else (allogeneic).

Bone marrow transplants (BMTs) were the first method for replacing stem cells, but are used less often today. Now, peripheral blood stem cell transplant (SCT) is the most common method. In peripheral blood stem cell donation, stem cells are taken from circulating blood. Before collection, the donor must take special medicines to cause stem cells to grow and enter the bloodstream.

Aplastic Anemia Pre-transplant Radiation Treatment & Effects

2009-10-14T03:10:00.000-05:00

Radiation is used for treatment of some types of cancers. It is also used to treat a patient prior to a bone marrow transplant. Prior to a bone marrow transplant (or stem cell transplant), total body radiation is used to kill the immune system and bone marrow. Typically, a level 12 radiation is used (comparatively, breast cancer radiation levels are usually at 40).

During Radiation
Extra precautions to take during and after radiation treatment include dietary changes, skin protection, clothing (not wearing tight clothes), and getting plenty of rest. For more information, see Radiation Treatment Care: http://www.cancer.org/docroot/MBC/content/MBC_2_3x_What_Can_I_Do_to_Take_Care_of_Myself_during_Therapy.asp?sitearea=MBC

Effects of Radiation
Radiation can cause fatigue, loss of hair, eating problems (particularly nauseau, sores in the mouth).

Brain Radiation
Stereotactic radiosurgery is often used when cancer has only spread to a few sites in the brain. Side effects vary depending on where the radiation is aimed, and usually become most serious 1 to 2 years after treatment. Talk with your radiation oncologist about what to watch for and when to call for help.

Sometimes the whole brain is treated with radiation when cancer has spread into many sites. This may also be done to prevent cancer from spreading to the brain. Whole brain radiation can cause some of the following side effects:

headaches
swelling of the brain
hair loss
nausea
vomiting
fatigue
hearing loss
skin and scalp changes
trouble with memory and speech
seizures

Medicines are usually given to prevent brain swelling, but it is important to let your doctor know about headaches and other symptoms. Delayed effects (usually 1 or 2 years later) of whole brain radiation can be caused by death of brain tissue. These delayed effects can include serious problems such as memory loss, stroke-like symptoms, and poor brain function.

Stomach & Intestinal Radiation
http://www.cancer.org/docroot/MBC/content/MBC_2_3X_What_Side_Effects_Occur_With_Radiation_Therapy_to_the_Stomach_and_Abdomen_Area.asp?sitearea=MBC

Cord Blood Collection

2009-10-13T01:49:00.000-05:00

http://en.wikipedia.org/wiki/Cord_blood discusses cord blood collection and preservation for future use.

Much of the general public is somewhat aware of embryonic stem cells because of the controversy associated with them. However, cord blood stem cells (hematopoietic stem cells) are not embryonic stem cells (pluripotent stem cells).

Umbilical cord collection

Donating Umbilical Cord & Cord Blood

2009-10-13T01:37:00.002-05:00

For information about donating umbibical cords, please visit: http://www.marrow.org/HELP/Donate_Cord_Blood_Share_Life/index.html

Where to donate cords.

Registry

2009-10-13T01:34:00.003-05:00

http://apps.facebook.com/causes/332?m=de0957a2 - Facebook causes

Joining The Bone Marrow Registry

2009-10-13T01:19:00.002-05:00

Be The Match Registry is the new name for the National Marrow Donor Program (NMDP) Registry.

If you joined the NMDP Registry or Be The Match Registry, in person, or online, you are part of the same registry.

If you have already given a blood sample or cheek cell sample to be tested for the registry, you do not need to join again. If you're not sure whether you've already joined, you can call 1 (800) MARROW-2 (1-800-627-7692).

National Bone Marrow Donor Program

2009-10-13T01:15:00.000-05:00

The National Bone Marrow Donor Program, also described on Wikipedia, operates "Be The Match" - website at: http://www.marrow.org/. Join the registry - http://www.marrow.org/JOIN/index.html.

It is easy to join the registry:

Answer a few health questions
Order your kit for typing
Return your swab from your cheek

Where to register: http://www.marrow.org/JOIN/Join_Now/join_now.html

Bone Marrow Registry Limitations

2009-10-13T01:14:00.000-05:00

There are limitations on who may register. The medical limitations are:

Medical Guidelines for Joining the Registry

When you join the Be The Match RegistrySM, you will complete a health questionnaire to confirm you meet the medical guidelines. The medical guidelines protect your health as a potential donor, as well as the health of transplant patients.

The guidelines below describe many factors that may make a person medically ineligible to join the Be The Match Registry. The guidelines listed here do not include every situation that could prevent a person from donating. If you are identified as a potential match for a patient, you will receive a physical exam to be sure it is safe — for both you and the patient — to donate.

Age

You must be between the ages of 18 and 60 to join the Be The Match Registry. Age guidelines are not meant to discriminate. They are meant to protect the safety of the donor and provide the best possible outcome for the patient. The lower age limit is based on the legal age of consent. A guardian or parent is not able to sign a release or give consent because unrelated bone marrow donation is a voluntary procedure.

The upper age limit is based on donor and patient considerations. There is a small increase in the risk of side effects from anesthesia in older donors.

AIDS/HIV

If you have been diagnosed with HIV (AIDS) you cannot register to become a potential volunteer donor listed on the Be The Match Registry. If you are at significant risk for the HIV/AIDS virus, you may not be allowed to register for a certain period of time. Contact your local donor center or contact us at 1 (800) MARROW2 (1-800-627-7692) to learn more about medical guidelines for persons who are at risk for the HIV/AIDS virus.

More information about HIV/AIDS and how it is transmitted may be found at the Department of Health and Human Services Centers for Disease Control and Prevention Web site at http://www.cdc.gov/hiv/

Allergies

If you suffer from common allergies to animals, the environment, or medications, etc., you will be allowed to register to donate. Serious or life-threatening allergies to medications or latex will need to be carefully evaluated before you may join the Be The Match Registry as a potential volunteer donor. See Asthma.

Arthritis

In general, if you have mild to moderate osteoarthritis or degenerative arthritis, you will be permitted to join the Be The Match Registry. Mild to moderate arthritis is defined as having little impact on daily activities, and is relieved by taking occasional medications. If you have arthritis affecting the spine, your condition will need to be carefully evaluated before you will be allowed to register to become a potential volunteer donor. If you have a severe medical arthritic condition such as rheumatoid, reactive, psoriatic and advanced stages of other types of arthritis, you will not be allowed to register.

Asthma

If you have asthma that is exercise-induced or is well-controlled using an inhaler (including those containing steroids), and have had no attacks requiring oral (pill) or intravenous (IV) steroids or emergency care in the past five years, you are able to register to become a potential volunteer donor. If you have asthma requiring regular/daily use of oral (pill) steroids, you will not be allowed to register.

Autoimmune Diseases

Most diseases which may be defined as auto-immune disorders, such as multiple sclerosis, systemic lupus, chronic fatigue syndrome and fibromyalgia, will prevent you from registering to become a potential volunteer donor. However, if you have a condition such as Hashimoto's or Graves' disease, you may be allowed to register as long as the disease has been successfully treated and you are medically stable.

Back, Neck, Hip and/or Spine

Common back problems such as sprains, strains and aches may not interfere with a bone marrow donation. If you have any of the following conditions, you will not be allowed to register:

Chronic back pain requiring ongoing medical treatment (including chiropractic care) and/or daily or frequent prescribed pain medication

Herniated, bulging or slipped disc anywhere along your spine diagnosed in the past 2 years

Single back surgery in the past 2 years

History of a spine fracture, if caused by bone disease

History of a spine fracture in the past 2 years, if caused by injury

Placement of rods or pins for scoliosis

History of a hip or pelvic fracture and/or repair

If you have significant back problems and/or any questions regarding your medical condition, contact your local donor center.

Bleeding Problems

You are not able to register if you have a serious bleeding problem such as hemophilia, Factor V Leiden and have had a blood clot or require anticoagulant medications, aplastic anemia, Von Willbrand’s Disease, or have a history of more than one deep vein thrombosis (blood clot). This also includes idiopathic thrombocytopenia purpura (also called ITP) — unless you only had childhood (less than 18 years old) episodes.

Blood Pressure

If you have elevated blood pressure (hypertension), you may register if your condition is well-controlled by medication or diet and if there is no associated heart disease. See Heart Disease, if applicable.

Breathing Problems

If you have serious breathing problems such as chronic obstructive pulmonary disease (COPD), emphysema, sleep apnea or cystic fibrosis, you are not able to register. See Asthma, if applicable.

Cancer

If you have a history of pre-cancerous cells, you will be able to register to become a potential volunteer donor. You are able to register if you have any of the following:

Cured, local skin cancer (basal cell, squamous cell or melanoma in situ).

Healed in situ cervical cancer.

Healed in situ breast cancer.

Healed in situ bladder cancer.

NOTE: In situ cancer is diagnosed at a very early stage and is specifically called “in situ” or Stage 0.

All other forms of cancer, including non-in situ melanoma, are not acceptable — no matter the length of time since treatment or recovery.

Cold or Flu

Recent infections, such as colds or flu will not prevent you from registering to become a potential volunteer donor.

Depression/Mental Health

If you have a history of depression that is stable and well-controlled, you may register to become a potential volunteer donor. Contact us at 1 (800) MARROW2 (1-800-627-7692) to discuss any other mental health conditions.

Diabetes

If you have diabetes, a careful evaluation of your current health status will be necessary. In general, if your diabetes is well-controlled by either diet or oral medications, you will be allowed to register. If you require insulin or any injected medications to treat diabetes or if you have diabetes-related serious health issues such as kidney, heart or eye disease, you will not be allowed to register. If you have questions regarding your diabetes, contact us at 1 (800) MARROW2 (1-800-627-7692).

Epilepsy

You may register if you have well-controlled epilepsy and have had no seizures in the past year.

Heart Disease

In general, if you have heart disease you cannot become a potential volunteer donor. This includes a past heart attack, any history of angioplasty, bypass surgery, heart valve replacement surgery or pacemakers. However, some heart conditions such as well-controlled irregular heartbeats (arrhythmias), or mitral valve prolapse that does not require medication or restrictions, or successful cardiac ablation will not prevent you from registering to become a donor. Your situation will be evaluated on an individual basis.

Hepatitis

You will be allowed to join the Be The Match Registry if you have:

Received a vaccine to prevent hepatitis

History of fully-recovered hepatitis A

Close or intimate contact with someone with active hepatitis B or C in the past year

Possible exposure to hepatitis B or C in the past year

History of jaundice due to mononucleosis or cytomegalovirus (CMV) infection

If you have the following, you cannot join the registry:

Diagnosed with hepatitis B or C

Been told you had a positive confirmatory test for hepatitis B or C

Been told you are a carrier of hepatitis B or C (also known as a “chronic” infection)

History of hepatitis or yellow jaundice (after age 10) without a known cause

If you have questions regarding hepatitis and registration, contact us at 1 (800) MARROW2 (1-800-627-7692).

More information about hepatitis and how it is transmitted may be found at the Department of Health and Human Services Centers for Disease Control and Prevention Web site at http://www.cdc.gov/ncidod/diseases/hepatitis/.

Immunizations

If you have received a common immunization, you may register to become a potential volunteer donor. If you have received an investigational vaccine, however, your situation must be evaluated. Some immunizations (such as smallpox) will require assessment if you are selected as a potential donor.

Kidney Problems

You cannot register if you have serious or chronic kidney problems such as polycystic kidney disease or glomerulonephritis. If you have had a kidney removed due to disease, you cannot register. However, if you donated a kidney to another person and are now fully recovered from that surgery, you are able to register. You are able to register if you have a history of kidney stones.

Liver Disease

If you have a serious liver disease such hepatitis B, hepatitis C, cirrhosis, or Wilson’s disease, you are not able to register. You are able to register if you have Gilbert’s syndrome. See Hepatitis, if applicable.

Lyme Disease

If you have fully recovered from Lyme disease, you may register to become a potential volunteer donor. If you have chronic Lyme disease, you may not register.

Medications

Treatment with some medications may affect your suitability to register as a potential volunteer donor. Most often it is not the actual drug itself but the condition requiring the medication that would determine your suitability. If you are currently taking medication(s), you may want to contact your local donor center to discuss the medication(s) and underlying condition.

Organ or Tissue Transplant

If you have received human tissues, such as bone (including bone powder for dental procedures), ligaments, tendons, skin and corneas, you may be allowed to register to become a potential volunteer donor, depending on the reason for the procedure.

If you received any of the following types of transplants you may not register:

Human organs such as heart, lung, liver, or kidney

Marrow or blood-forming cells

Dura mater

Xenotransplant (live tissues from animals)

Piercing (Body, Skin, Ear)

You may register to become a potential volunteer donor if you have had ear or body piercing in the past year.

Pregnancy

If you are pregnant you may register for the Be The Match Registry. However, you must be temporarily deferred until you are fully recovered from the delivery or c-section. Blood-forming cells cannot be collected at any time during pregnancy.

If you are currently pregnant or planning on becoming pregnant, you may want to consider donating your baby's umbilical cord blood after your baby is born. To see if this is an option at your hospital, see Where to Donate Cord Blood.

Sexually Transmitted Diseases

If you have or have had a sexually transmitted disease such as herpes, HPV, chlamydia or syphilis you are eligible to register for the Be The Match Registry.

Tattoos

You may register if you received a tattoo in the past year.

Travel

You are allowed to register regardless of where you have traveled. If you are selected as a potential donor, recent travel to areas at risk for such infections such as malaria or mad cow disease will be evaluated.

Tuberculosis

If you have had active pulmonary tuberculosis (TB) within the last two years, you may not register. You can register if you have completed treatment for TB, if it has been more than 2 years, and you have a clear chest x-ray. You may also register if you have a history of a positive Mantoux (PPD).

Weight

A formula that measures body fat — called Body Mass Index (BMI) — is used to evaluate weight when determining donor suitability. You may not be allowed to register if your BMI (both underweight and overweight) would present a risk to your safety. See Donor Weight Guidelines for more information regarding upper weight criteria. While we do not have a guideline table listing minimum weight criteria, volunteers who are extremely underweight for their height would need to be carefully evaluated.

For more information, see: http://www.marrow.org/JOIN/Med_Guidelines_Join/index.html

State U.S. Representatives

2009-10-12T03:28:00.002-05:00

Where to fax your Representative:

Alabama
Gov. Bob Riley (R) 334-242-7100
State Legislature Links
Sen. Jeff Sessions (R) Fax: 202-224-3149
Sen. Richard C. Shelby (R) Fax: 202-224-3416
Rep. Jo Bonner (R-1) Fax: 202-225-0562
Rep. Bobby Bright (D-2) Fax: 202-225-8913
Rep. Michael Rogers (R-3) Fax: 202-226-8485
Rep. Robert Aderholt (R-4) Fax: 202-225-5587
Rep. Parker Griffith (D-5) Fax: 202-225-4392
Rep. Spencer Bachus (R-6) Fax: 202-225-2082
Rep. Artur Davis (D-7) Fax: 202-226-9567

Alaska
Gov. Sean Parnell (R) 907-465-3500
State Legislature Links
Sen. Lisa Murkowski (R) Fax: 202-224-5301
Sen. Mark Begich (D) Fax: 202-224-2354
Rep. Don Young (R-At Large) Fax: 202-225-0425

Arizona
Gov. Jan Brewer (R) 602-542-4331
State Legislature Links
Arizona Constitution
Sen. Jon Kyl. (R) Fax: 202-224-2207
Sen. John McCain (R) Fax: 202-228-2862
Rep. Ann Kirkpatrick (D-1) Fax: 202-226-9739
Rep. Trent Franks (R-2) Fax: 202-225-6328
Rep. John Shadegg (R-3) Fax: 202-225-3462
Rep. Ed Pastor (D-4) Fax: 202-225-1655
Rep. Harry Mitchell (D-5) Fax: 202-225-3263
Rep. Jeff Flake (R-6) Fax: 202-226-4386
Rep. Raul Grijalva (D-7) Fax: 202-225-1541
Rep. Gabrielle Giffords (D-8) Fax: 202-225-0378

Arkansas
Gov. Mike Beebe (D) 501-682-2345
State Legislature Links
Sen. Blanche Lincoln (D) Fax: 202-228-1371
Sen. Mark Pryor (D) Fax: 202-228-0908
Rep. Marion Berry (D-1) Fax: 202-225-5602
Rep. Vic Snyder (D-2) Fax: 202-225-5903
Rep. John Boozeman (R-3) Fax: 202-225-5713
Rep. Mike Ross (D-4) Fax: 202-225-1314

California
Gov. Arnold Schwarzenegger (R) Fax: 916-558-3160
State Legislature Links
Sen. Barbara Boxer (D) Fax: 415-956-6701
Sen. Dianne Feinstein (D) Fax: 202-228-3954
Rep. Mike Thompson (D-1) Fax: 202-225-4335
Rep. Wally Herger (R-2) Fax: 202-225-1740
Rep. Dan Lungren (R-3) Fax: 202-226-1298
Rep. Tom McClintock (R-4) Fax: 202-225-5444
Rep. Doris Matsui (D-5) Fax: 202-225-0566
Rep. Lynn Woolsey (D-6) Fax: 202-225-5163
Rep. George Miller (D-7) Fax: 202-225-5609
Rep. Nancy Pelosi (D-8) Fax: 202-225-8259
Non Constituent email address for Speaker Pelosi.
Rep. Barbara Lee (D-9) Fax: 202-225-9817
Vacant (-10) Fax: 202-225-5914
Rep. Jerry McNerney (D-11) Fax: 202-226-0861
Rep. Jackie Speier (D-12) Fax: 202-226-4183
Rep. Pete Stark (D-13) Fax: 202-226-3805
Rep. Anna Eshoo (D-14) Fax: 202-225-8890
Rep. Mike Honda (D-15) Fax: 202-225-2699
Rep. Zoe Lofgren (D-16) Fax: 202-225-3336
Rep. Sam Farr (D-17) Fax: 202-225-6791
Rep. Dennis Cardoza (D-18) Fax: 202-225-0819
Rep. George Radanovich (R-19) Fax: 202-225-3402
Rep. Jim Costa (D-20) Fax: 202-225-9308
Rep. Devin Nunes (R-21) Fax: 202-225-3404
Rep. Kevin McCarthy (R-22) Fax: 202-225-8798
Rep. Lois Capps (D-23) Fax: 202-225-5632
Rep. Elton Gallegly (R-24) Fax: 202-225-1100
Rep. Howard McKeon (R-25) Fax: 202-225-0683
Rep. David Dreier (R-26) Fax: 202-225-7018
Rep. Brad Sherman (D-27) Fax: 202-225-5879
Rep. Howard Berman (D-28) Fax: 202-225-3196
Rep. Adam Schiff (D-29) Fax: 202-225-5828
Rep. Henry Waxman (D-30) Fax: 202-225-4099
Rep. Xavier Becerra (D-31) Fax: 202-225-2202
Rep. Judy Chu (D-32) Fax: 202-225-5467
Rep. Diane Watson (D-33) Fax: 202-225-2422
Rep. Lucille Roybal-Allard (D-34) Fax: 202-226-0350
Rep. Maxine Waters (D-35) Fax: 202-225-7854
Rep. Jane Harman (D-36) Fax: 202-226-7290
Rep. Laura Richardson (D-37) Fax: 202-225-7926
Rep. Grace Napolitano (D-38) Fax: 202-225-0027
Rep. Linda Sanchez (D-39) Fax: 202-225-5859
Rep. Ed Royce (R-40) Fax: 202-226-0335
Rep. Jerry Lewis (R-41) Fax: 202-225-6498
Rep. Gary Miller (R-42) Fax: 202-226-6962
Rep. Joe Baca (D-43) Fax: 202-225-8671
Rep. Ken Calvert (R-44) Fax: 202-225-2004
Rep. Mary Bono (R-45) Fax: 202-225-2961
Rep. Dana Rohrabacher (R-46) Fax: 202-225-0145
Rep. Loretta Sanchez (D-47) Fax: 202-225-5859
Rep. John Campbell (R-48) Fax: 202-225-9177
Rep. Darrell Issa (R-49) Fax: 202-225-3303
Rep. Brian Bilbray (R-50) Fax: 202-225-2558
Rep. Bob Filner (D-51) Fax: 202-225-9073
Rep. Duncan Hunter (R-52) Fax: 202-225-0235
Rep. Susan Davis (D-53) Fax: 202-225-2948

Colorado
Gov. Bill Ritter (D) 303-866-2471
State Legislature Links
Sen. Mark Udall (D) Fax: 202-224-6471
Sen. Michael Bennet (D) Fax: 202-224-1933
Rep. Diana DeGette (D-1) Fax: 202-225-5657
Rep. Jared Polis (D-2) Fax: 202-226-7840
Rep. John Salazar (D-3) Fax: 202-226-9669
Rep. Betsy Markey (D-4) Fax: 202-225-5870
Rep. Doug Lamborn (R-5) Fax: 202-225-1942
Rep. Mike Coffman (R-6) Fax: 202-226-4623
Rep. Ed Perlmutter (D-7) Fax: 202-225-5278

Connecticut
Gov. Jodi Rell (R) 860-566-4840
State Legislature Links
Sen. Christopher Dodd (D) Fax: 202-224-1083
Sen. Joseph Lieberman (D) Fax: 202-224-9750
Rep. John Larson (D-1) Fax: 202-225-1031
Rep. Joe Courtney (D-2) Fax: 202-225-4977
Rep. Rosa DeLauro (D-3) Fax: 202-225-4890
Rep. Jim Himes (D-4) Fax: 202-225-9629
Rep. Chris Murphy (D-5) Fax: 202-225-4488

Delaware
Gov. Jack Markell (D) 302-739-4101
State Legislature Links
Sen. Edward Kaufman (D) Fax:
Sen. Tom Carper (D) Fax: 202-228-2190
Rep. Michael Castle (R-At Large) Fax: 202-225-2291

Florida
Gov. Charlie Crist (R) 850-488-4441
State Legislature Links
Sen. George LeMieux (R) Fax: 202-224-2237
Sen. Bill Nelson (D) Fax: 202-228-2183
Rep. Jeff Miller (R-1) Fax: 202-225-3414
Rep. F. Allen Boyd (D-2) Fax: 202-225-5615
Rep. Corrine Brown (D-3) Fax: 202-225-2256
Rep. Ander Crenshaw (R-4) Fax: 202-225-2504
Rep. Virginia Brown-Waite (R-5) Fax: 202-226-6559
Rep. Cliff Stearns (R-6) Fax: 202-225-3973
Rep. John Mica (R-7) Fax: 202-226-0821
Rep. Alan Grayson (D-8) Fax: 202-225-0999
Rep. Gus Bilirakis (R-9) Fax: 202-225-4085
Rep. Bill Young (R-10) Fax: 202-225-9764
Rep. Kathy Castor (D-11) Fax: 202-225-5652
Rep. Adam Putnam (R-12) Fax: 202-225-0585
Rep. Vern Buchanan (R-13) Fax: 202-226-0828
Rep. Connie Mack (R-14) Fax: 202-225-6820
Rep. Bill Posey (R-15) Fax: 202-225-3516
Rep. Tom Rooney (D-16) Fax: 202-225-3132
Rep. Kendrick Meek (D-17) Fax: 202-226-0777
Rep. Ileana Ros-Lehtinen (R-18) Fax: 202-225-5620
Rep. Robert Wexler (D-19) Fax: 202-225-5974
Rep. Debbie Wasserman Schultz (D-20) Fax: 202-225-8456
Rep. Lincoln Diaz-Balart (R-21) Fax: 202-225-8576
Rep. Ron Klein (D-22) Fax: 202-225-8398
Rep. Alcee Hastings (D-23) Fax: 202-225-1171
Rep. Suzanne Kosmas (D-24) Fax: 202-226-6299
Rep. Mario Diaz-Balart (R-25) Fax: 202-226-0346

Georgia
Gov. Sonny Perdue (R) 404-656-1776
State Legislature Links
Sen. Saxby Chamblis (R) Fax 202-224-0103
Sen. Johnny Isakson (R) Fax: 202-228-2090
Rep. Jack Kingston (R-1) Fax: 202-226-2269
Rep. Sanford Bishop (D-2) Fax: 202-225-2203
Rep. Lynn Westmoreland (R-3) Fax: 202-225-3013
Rep. Hank Johnson (D-4) Fax: 202-226-0691
Rep. John Lewis (D-5) Fax: 202-225-0351
Rep. Thomas Price (R-6) Fax: 202-225-4656
Rep. John Linder (R-7) Fax: 202-225-4696
Rep. Jim Marshall (D-8) Fax: 202-225-2515
Rep. Nathan Deal (R-9) Fax: 202-225-5995
Rep. Paul Broun (R-10) Fax: 202-225-8272
Rep. Phil Gingrey (R-11) Fax: 202-225-2944
Rep. John Barrow (D-12) Fax: 202-225-3377
Rep. David Scott (D-13) Fax: 202-225-4628

Hawaii
Gov. Linda Lingle (R) 808-586-0034
State Legislature Links
Sen. Daniel K. Akaka (D) Fax: 202-224-2126
Sen. Daniel K. Inouye (D) Fax: 202-224-6747
Rep. Neil Abercrombie (D-1) Fax: 202-225-4580
Rep. Mazie Hirono (D-2) Fax: 202-225-4987

Idaho
Gov. Butch Otter (R) 208-334-2100
State Legislature Links
Sen. James Risch (R) Fax: 202-228-1067
Sen. Michael Crapo (R) Fax: 202-228-1375
Rep. Walt Minnick (D-1) Fax: 202-225-3029
Rep. Michael Simpson (R-2) Fax: 202-225-8216

Illinois
Gov. Pat Quinn (D) 217-782-0244
State Legislature Links
Sen. Dick Durbin (D) Fax: 202-228-0400
Sen. Roland Burris (D) Fax: 202-228-5417
Rep. Bobby Rush (D-1) Fax: 202-226-0333
Rep. Jesse Jackson, Jr. (D-2) Fax: 202-225-0899
Rep. Daniel Lipinski (D-3) Fax: 202-225-1012
Rep. Luis Gutirrez (D-4) Fax: 202-225-7810
Rep. Mike Quigley (D-5) Fax: 202-225-5603
Rep. Peter Roskam (R-6) Fax: 202-225-1166
Rep. Danny Davis (D-7) Fax: 202-225-5641
Rep. Melissa Bean (D-8) Fax: 202-225-7830
Rep. Janice Schakowsky (D-9) Fax: 202-226-6890
Rep. Mark Kirk (R-10) Fax: 202-225-0837
Rep. Deborah Halvorson (D-11) Fax: 202-225-3521
Rep. Jerry Costello (D-12) Fax: 202-225-0285
Rep. Judy Biggert (R-13) Fax: 202-225-9420
Rep. Bill Foster (D-14) Fax: 202-225-0697
Rep. Timothy Johnson (R-15) Fax: 202-226-0791
Rep. Donald Manzullo (R-16) Fax: 202-225-5284
Rep. Philip Hare (D-17) Fax: 202-225-5396
Rep. Aaron Schock (R-18) Fax: 202-225-9249
Rep. John Shimkus (R-19) Fax: 202-225-5880

Indiana
Gov. Mitch Daniels (R) 317-232-4567
State Legislature Links
Sen. Evan Bayh (D) Fax: (202) 228-1377
Sen. Richard G. Lugar (R) Fax: 202-228-0360
Rep. Peter Visclosky (D-1) Fax: 202-225-2493
Rep. Joe Donnelly (D-2) Fax: 202-225-6798
Rep. Mark Souder (R-3) Fax: 202-225-3479
Rep. Stephen Buyer (R-4) Fax: 202-225-2267
Rep. Dan Burton (R-5) Fax: 202-225-0016
Rep. Mike Pence (R-6) Fax: 202-225-3382
Rep. André Carson (D-7) Fax: 202-225-5633
Rep. Brad Ellsworth (D-8) Fax: 202-225-3284
Rep. Baron Hill (D-9) Fax: 202-226-6866

Iowa
Gov. Chet Culver (D) 515-281-5211
State Legislature Links
Sen. Chuck Grassley (R) Fax: 202-224-6020
Sen. Tom Harkin (D) Fax: 202-224-9369
Rep. Bruce Braley (D-1) Fax: 202-225-9129
Rep. David Loebsack (D-2) Fax: 202-226-0757
Rep. Leonard Boswell (D-3) Fax: 202-225-5608
Rep. Tom Latham (R-4) Fax: 202-225-3301
Rep. Steve King (R-5) Fax: 202-225-3193

Kansas
Gov. Kathleen Sebelius (D) 785-296-3232
State Legislature Links
Sen. Sam Brownback (R) Fax: 202-228-1265
Sen. Pat Roberts (R) Fax: 202-224-3514
Rep. Jerry Moran (R-1) Fax: 202-225-5124
Rep. Lynn Jenkins (R-2) Fax: 202-225-7986
Rep. Dennis Moore (R-3) Fax: 202-225-2807
Rep. Todd Tiahrt (R-4) Fax: 202-225-3489
Kentucky
Gov. Steve Beshear (D) 502-564-2611
State Legislature Links
Sen. Jim Bunning (R) Fax: 202-228-1373
Sen. Mitch McConnell (R) Fax: 202-224-2499
Rep. Ed Whitfield (R-1) Fax: 202-225-3547
Rep. Brett Guthrie (R-2) Fax: 202-226-2019
Rep. John Yarmuth (D-3) Fax: 202-225-5776
Rep. Geoff Davis (R-4) Fax: 202-225-0003
Rep. Harold Rogers (R-5) Fax: 202-225-0940
Rep. Ben Chandler (D-6) Fax: 202-225-2122

Louisiana
Gov. Bobby Jindal (R) 225-342-0991
State Legislature Links
Sen. Mary Landrieu (D) Fax: 202-224-9735
Sen. David Vitter (R) Fax: 202-228-2577
Rep. Steve Scalise (R-1) Fax: (202) 226-0386
Rep. Joseph Cao (R-2) Fax: 202-225-1988
Rep. Charlie Melancon (D-3) Fax: (202) 226-3944
Rep. John Fleming (R-4) Fax: 202-225-8039
Rep. Rodney Alexander (D-5) Fax: 202-225-5639
Rep. Bill Cassidy (R-6) Fax: 202-225-7313
Rep. Charles Boustany (R-7) Fax: 202-225-5724

Maine
Gov. John Baldacci (D) 207-287-1034
State Legislature Links
Sen. Susan Collins (R) Fax: 202-224-2693
Sen. Olympia Snowe (R) Fax: 202-224-1946
Rep. Tom Allen (D-1) Fax: 202-225-5590
Rep. Michael Michaud (D-2) Fax: 202-225-2943

Maryland
Gov. Martin O'Malley (D) 800-811-8336
State Legislature Links
Sen. Benjamin Cardin (D) Fax: 202-224-1651
Sen. Barbara Mikulski (D) Fax: 202-224-8858
Rep. Wayne Gilchrest (R-1) Fax: 202-225-0254
Rep. "Dutch" Ruppersberger (D-2) Fax: 202-225-3094
Rep. John Sarbanes (D-3) Fax: 202-225-9219
Rep. Donna Edwards (D-4) Fax: 202-225-8714
Rep. Steny Hoyer (D-5) Fax: 202-225-4300
Rep. Roscoe Bartlett (R-6) Fax: 202-225-2193
Rep. Elijah Cummings (D-7) Fax: 202-225-3178
Rep. Chris Van Hollen (D-8) Fax: 202-225-0375

Massachusetts
Gov. Deval Patrick (D) Fax: 202-624-7714
State Legislature Links
Sen. Paul Kirk Jr (D) Fax: 202-224-2417
Sen. John Kerry (D) Fax: 202-224-8525
Rep. John Olver (D-1) Fax: 202-226-1224
Rep. Richard Neal (D-2) Fax: 202-225-8112
Rep. Jim McGovern (D-3) Fax: 202-225-5759
Rep. Barney Frank (D-4) Fax: 202-225-0182
Rep. Niki Tsongas (D-5) Fax: 202-226-0771
Rep. John Tierney (D-6) Fax: 202-225-5915
Rep. Edward Markey (D-7) Fax: 202-226-0092
Rep. Michael Capuano (D-8) Fax: 202-225-9322
Rep. Stephen Lynch (D-9) Fax: 202-225-3984
Rep. William Delahunt (D-10) Fax: 202-225-5658

Michigan
Gov. Jennifer Granholm (D) Fax:(517) 335-6863
State Legislature Links
Sen. Carl Levin (D) Fax: 202-224-1388
Sen. Debbie Stabenow (D) Fax: 202-228-0325
Rep. Bart Stupak (D-1) Fax: 202-225-4744
Rep. Peter Hoekstra (R-2) Fax: 202-226-0779
Rep. Vernon Ehlers (R-3) Fax: 202-225-5144
Rep. David Camp (R-4) Fax: 202-225-9679
Rep. Dale Kildee (D-5) Fax: 202-225-6393
Rep. Fred Upton (R-6) Fax: 202-225-4986
Rep. Mark Schauer (D-7) Fax: 202-225-6281
Rep. Mike Rogers (R-8) Fax: 202-225-5820
Rep. Gary Peters (D-9) Fax: 202-226-2356
Rep. Candice Miller (R-10) Fax: 202-226-1169
Rep. Thad McCotter (R-11) Fax: 202-225-2667
Rep. Sander Levin (D-12) Fax: 202-226-1033
Rep. Carolyn Kilpatrick (D-13) Fax: 202-225-5730
Rep. John Conyers (D-14) Fax: 202-225-0072
Rep. John Dingell (D-15) Fax: 202-226-0371

Minnesota
Gov. Tim Pawlenty (R) 651-296-3391
State Legislature Links
Sen. Amy Klobuchar (D) Fax: 202-228-2186
Sen. Al Franken (D) Fax: 202-224-1152
Rep. Tim Walz (D-1) Fax: 202-225-3433
Rep. John Kline (R-2) Fax: 202-225-2595
Rep. Erik Paulsen (R-3) Fax: 202-225-6351
Rep. Betty McCollum (D-4) Fax: 202-225-1968
Rep. Keith Ellison (D-5) Fax: 202-225-4886
Rep. Michelle Bachman (R-6) Fax: 202-225-6475
Rep. Collin Peterson (D-7) Fax: 202-225-1593
Rep. James Oberstar (D-8) Fax: 202-225-6211

Mississippi
Gov. Haley Barbour (R) 601-359-3150
State Legislature Links
Sen. Thad Cochran (R) Fax: 202-224-9450
Sen. Roger Wicker (R) Fax: 202-228-0378
Rep. Travis Childers (D-1) Fax: 662-844-5437
Rep. Bennie Thompson (D-2) Fax: 202-225-5898
Rep. Gregg Harper (R-3) Fax: 202-225-5797
Rep. Gene Taylor (D-4) Fax: 202-225-7074

Missouri
Gov. Jeremiah Nixon (D) 573-751-3222
State Legislature Links
Sen. Kit Bond (R) Fax: 202-224-8149
Sen. Claire McCaskill (D) Fax: 202-228-6326
Rep. William Clay, Jr. (D-1) Fax: 202-226-3717
Rep. Todd Akin (R-2) Fax: 202-225-2563
Rep. Russ Carnahan (D-3) Fax: 202-225-7452
Rep. Ike Skelton (D-4) Fax: 202-225-2876
Rep. Emanuel Cleaver (D-5) Fax: 202-225-4403
Rep. Sam Graves (R-6) Fax: 202-225-8221
Rep. Roy Blunt (R-7) Fax: 202-225-5604
Rep. Jo Ann Emerson (R-8) Fax: 202-226-0326
Rep. Blaine Luetkemeyer (R-9) Fax: 202-225-5712

Montana
Gov. Brian Schweitzer (D) 406-444-3111
State Legislature Links
Sen. Max Baucus (D) Fax: 202-224-9412
Sen. Jon Tester (D) Fax: 202-224-8594
Rep. Dennis Rehberg (R-At Large) Fax: 202-225-5687

Nebraska
Gov. Dave Heineman (R) Fax: 402-471-6031
State Legislature Links
Sen. Mike Johanns (R) Fax: 202-224-5213
Sen. Ben Nelson (D) Fax: 202-228-0012
Rep. Jeff Fortenberry (R-1) Fax: 202-225-5686
Rep. Lee Terry (R-2) Fax: 202-226-5452
Rep. Adrian Smith (R-3) Fax: 202-225-0207

Nevada
Gov. Jim Gibbons (R) 775-684-5670
State Legislature Links
Sen. John Ensign (R) Fax: 202-228-2193
Sen. Harry Reid (D) Fax: 202-224-7327
Rep. Shelley Berkley (D-1) Fax: 202-225-3119
Rep. Dean Heller (R-2) Fax: 202-225-5679
Rep. Dina Titus (D-3) Fax: 202-225-2185

New Hampshire
Gov. John Lynch (R) 603-271-7680
State Legislature Links
Sen. Judd Gregg (R) Fax: 202-224-4952
Sen. Jeanne Shaheen (D) Fax: 202-228-4131
Rep. Carol Shea-Porter (D-1) Fax: 202-225-5822
Rep. Paul Hodes (D-2) Fax: 202-225-2946

New Jersey
Gov. Jon Corzine (D) 609-292-6000
State Legislature Links
Sen. Robert Menendez (D) Fax: 202-228-2197
Sen. Frank Lautenberg (D) Fax: 202-228-4054
Rep. Robert Andrews (D-1) Fax: 202-225-6583
Rep. Frank LoBiondo (R-2) Fax: 202-225-3318
Rep. John Alder (D-3) Fax: 202-225-0778
Rep. Christopher Smith (R-4) Fax: 202-225-7768
Rep. Scott Garrett (R-5) Fax: 202-225-9048
Rep. Frank Pallone (D-6) Fax: 202-225-9665
Rep. Leonard Lance (R-7) Fax: 202-225-9460
Rep. William Pascrell (D-8) Fax: 202-225-5751
Rep. Steven Rothman (D-9) Fax: 202-225-5851
Rep. Donald Payne (D-10) Fax: 202-225-4160
Rep. Rodney Frelinghuysen (R-11) Fax: 202-225-3186
Rep. Rush Holt (D-12) Fax: 202-225-6025
Rep. Albio Sires (D-13) Fax: 202-226-0792

New Mexico
Gov. Bill Richardson (D) 505-476-2200
State Legislature Links
Sen. Jeff Bingaman (D) Fax: 202-224-2852
Sen. Tom Udall (D) Fax: 202-228-3261
Rep. Martin Heinrich (D-1) Fax: 202-225-4975
Rep. Harry Teague (D-2) Fax: 202-225-9599
Rep. Ben Lujan (D-3) Fax: 202-226-1528

New York
Gov. David Patterson (D) 518-474-8390
State Assembly Links
State Senate Links
Sen. Charles Schumer (D) Fax: 202-228-3027
Sen. Kirsten Gillibrand (D) Fax: 202-228-0282
Rep. Tim Bishop (D-1) Fax: 202-225-3143
Rep. Steven Israel (D-2) Fax: 202-225-4669
Rep. Peter King (R-3) Fax: 202-226-2279
Rep. Carolyn McCarthy (D-4) Fax: 202-225-5758
Rep. Gary Ackerman (D-5) Fax: 202-225-1589
Rep. Gregory Meeks (D-6) Fax: 202-226-4169
Rep. Joseph Crowley (D-7) Fax: 202-225-1909
Rep. Jerrold Nadler (D-8) Fax: 202-225-6923
Rep. Anthony Weiner (D-9) Fax: 202-226-7243
Rep. Edolphus Towns (D-10) Fax: 202-225-1018
Rep. Yvette Clarke (D-11) Fax: 202-226-0112
Rep. Nydia Velazquez (D-12) Fax: 202-226-0327
Rep. Michael McMahon (D-13) Fax: 202-225-1272
Rep. Carolyn Maloney (D-14) Fax: 202-225-4709 Non-constituents
Rep. Charles Rangel (D-15) Fax: 202-226-0816
Rep. Jose Serrano (D-16) Fax: 202-225-6001
Rep. Eliot Engel (D-17) Fax: 202-225-5513
Rep. Nita Lowey (D-18) Fax: 202-225-0546
Rep. John Hall (D-19) Fax: 202-225-3289
Rep. Scott Murphy (D-20) Fax: 202-225-1168
Rep. Paul Tonko (D-21) Fax: 202-225-5077
Rep. Maurice Hinchey (D-22) Fax: 202-226-0774
Rep. John McHugh (R-23) Fax: 202-226-0621
Rep. Michael Arcuri (D-24) Fax: 202-225-1891
Rep. Dan Maffei (D-25) Fax: 202-225-4042
Rep. Christopher Lee (R-26) Fax: 202-225-5910
Rep. Brian Higgins (D-27) Fax: 202-226-0347
Rep. Louise Slaughter (D-28) Fax: 202-225-7822
Rep. Eric Massa (D-29) Fax: 202-226-6599

North Carolina
Gov. Bev Purdue (D) 919-733-4240
State Legislature Links
Sen. Richard Burr (R) Fax 202-228-2981
Sen. Kay Hagan (D) Fax: 202-224-1100
Rep. G.K. Butterfield (D-1) Fax: 202-225-3354
Rep. Bob Etheridge (D-2) Fax: 202-225-5662
Rep. Walter Jones (R-3) Fax: 202-225-3286
Rep. David Price (D-4) Fax: 202-225-2014
Rep. Virginia Foxx (R-5) Fax: 202-225-2995
Rep. Howard Coble (R-6) Fax: 202-225-8611
Rep. Mike McIntyre (D-7) Fax: 202-225-5773
Rep. Larry Kissel (D-8) Fax: 202-225-4036
Rep. Sue Myrick (R-9) Fax: 202-225-3389
Rep. Patrick McHenry (R-10) Fax: 202-225-0316
Rep. Heath Shuler (D-11) Fax: 202-226-6422
Rep. Melvin Watt (D-12) Fax: 202-225-1512
Rep. Brad Miller (D-13) Fax: 202-225-0181

North Dakota
Gov. John Hoeven (R) 701-328-2200
State Legislature Links
Sen. Kent Conrad (D) Fax: 202-224-7776
Sen. Byron L. Dorgan (D) Fax: 202-224-1193
Rep. Earl Pomeroy (D-At Large) Fax: 202-226-0893
Ohio
Gov. Ted Strickland (D) 614-466-3555
State Legislature Links
Sen. Sherrod Brown (D) Fax: 202-224-6519
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South Carolina
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South Dakota
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Texas
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H. R. 1230 Current Sponsors

2009-10-12T03:24:00.001-05:00

The current cosponsors of the bill are listed here: http://thomas.loc.gov/cgi-bin/bdquery/z?d111:HR01230:@@@P. They are:

COSPONSORS(38), ALPHABETICAL [followed by Cosponsors withdrawn]: (Sort: by date)

Rep Abercrombie, Neil [HI-1] - 2/26/2009 Rep Altmire, Jason [PA-4] - 6/23/2009
Rep Arcuri, Michael A. [NY-24] - 2/26/2009 Rep Baldwin, Tammy [WI-2] - 6/23/2009
Rep Barrow, John [GA-12] - 6/23/2009 Rep Bishop, Sanford D., Jr. [GA-2] - 2/26/2009
Rep Bishop, Timothy H. [NY-1] - 5/21/2009 Rep Bordallo, Madeleine Z. [GU] - 2/26/2009
Rep Braley, Bruce L. [IA-1] - 9/29/2009 Rep Burgess, Michael C. [TX-26] - 5/21/2009
Rep Butterfield, G. K. [NC-1] - 10/6/2009 Rep Conyers, John, Jr. [MI-14] - 2/26/2009
Rep DeGette, Diana [CO-1] - 2/26/2009 Rep Emerson, Jo Ann [MO-8] - 2/26/2009
Rep Engel, Eliot L. [NY-17] - 9/8/2009 Rep Eshoo, Anna G. [CA-14] - 2/26/2009
Rep Frank, Barney [MA-4] - 2/26/2009 Rep Gonzalez, Charles A. [TX-20] - 5/21/2009
Rep Green, Gene [TX-29] - 2/26/2009 Rep Hinchey, Maurice D. [NY-22] - 9/8/2009
Rep Hirono, Mazie K. [HI-2] - 2/26/2009 Rep Honda, Michael M. [CA-15] - 4/2/2009
Rep King, Peter T. [NY-3] - 2/26/2009 Rep Lewis, John [GA-5] - 2/26/2009
Rep McCotter, Thaddeus G. [MI-11] - 9/30/2009 Rep McDermott, Jim [WA-7] - 2/26/2009
Rep McGovern, James P. [MA-3] - 2/26/2009 Rep Miller, Candice S. [MI-10] - 9/8/2009
Rep Murphy, Christopher S. [CT-5] - 6/23/2009 Rep Murtha, John P. [PA-12] - 2/26/2009
Rep Platts, Todd Russell [PA-19] - 5/4/2009 Rep Schakowsky, Janice D. [IL-9] - 9/29/2009
Rep Schwartz, Allyson Y. [PA-13] - 2/26/2009 Rep Sestak, Joe [PA-7] - 6/4/2009
Rep Snyder, Vic [AR-2] - 10/7/2009 Rep Stark, Fortney Pete [CA-13] - 9/8/2009
Rep Van Hollen, Chris [MD-8] - 2/26/2009 Rep Wolf, Frank R. [VA-10] - 2/26/2009

H. R. 1230 - Support Bill HR 1230

2009-10-12T03:16:00.001-05:00

Please contact your Representatives and ask for their support of H. R. 1230, a bill to amend the Public Health Services Act to establish a National Acquired Bone Marrow Failure Disease Registry.

111th CONGRESS

1st Session

H. R. 1230
To amend the Public Health Service Act to provide for the establishment of a National Acquired Bone Marrow Failure Disease Registry, to authorize research on acquired bone marrow failure diseases, and for other purposes.

--------------------------------------------------------------------------------
IN THE HOUSE OF REPRESENTATIVES
February 26, 2009

Ms. Matsui (for herself, Mr. Bishop of Georgia, Mr. Murtha, Mr. McDermott, Mrs. Emerson, Mr. Gene Green of Texas, Mr. Abercrombie, Ms. Schwartz, Mr. Conyers, Ms. Hirono, Ms. Bordallo, Mr. Lewis of Georgia, Mr. Frank of Massachusetts, Mr. Wolf, Mr. King of New York, Mr. Van Hollen, Mr. McGovern, Ms. DeGette, Mr. Arcuri, and Ms. Eshoo) introduced the following bill; which was referred to the Committee on Energy and Commerce

A BILL
To amend the Public Health Service Act to provide for the establishment of a National Acquired Bone Marrow Failure Disease Registry, to authorize research on acquired bone marrow failure diseases, and for other purposes.

Be it enacted by the Senate and House of Representatives of the United States of America in Congress assembled,

SECTION 1. Short title.

This Act may be cited as the “Bone Marrow Failure Disease Research and Treatment Act of 2009”.

SEC. 2. Findings.

The Congress finds the following:

(1) Between 20,000 and 30,000 Americans are diagnosed each year with myelodysplastic syndromes, aplastic anemia, paroxysmal nocturnal hemoglobinuria, and other acquired bone marrow failure diseases.

(2) Acquired bone marrow failure diseases have a debilitating and often fatal impact on those diagnosed with these disease.

(3) While some treatments for acquired bone marrow failure diseases can prolong and improve the quality of patients’ lives, there is no single cure for these diseases.

(4) The prevalence of acquired bone marrow failure diseases in the United States will continue to grow as the general public ages.

(5) Evidence exists suggesting that acquired bone marrow failure diseases occur more often in minority populations, particularly in Asian-American and Hispanic/Latino populations.

(6) The National Heart, Lung, and Blood Institute and the National Cancer Institute have conducted important research into the causes of and treatments for acquired bone marrow failure diseases.

(7) The National Marrow Donor Program Registry has made significant contributions to the fight against bone marrow failure diseases by connecting millions of potential marrow donors with individuals and families suffering from these conditions.

(8) Despite these advances, a more comprehensive Federal strategic effort among numerous Federal agencies is needed to discover a cure for acquired bone marrow failure disorders.

(9) Greater Federal surveillance of acquired bone marrow failure diseases is needed to gain a better understanding of the causes of acquired bone marrow failure diseases.

(10) The Federal Government should increase its research support for and engage with public and private organizations in developing a comprehensive approach to combat and cure acquired bone marrow failure diseases.

SEC. 3. National Acquired Bone Marrow Failure Disease Registry.

Part B of the Public Health Service Act (42 U.S.C. 311 et seq.) is amended by inserting after section 317T the following:

“SEC. 317U. National Acquired Bone Marrow Failure Disease Registry.

“(a) Establishment of registry.—

“(1) IN GENERAL.—Not later than 6 months after the date of the enactment of this section, the Secretary, acting through the Director of the Centers for Disease Control and Prevention, shall—

“(A) develop a system to collect data on acquired bone marrow failure diseases; and

“(B) establish and maintain a national and publicly available registry, to be known as the National Acquired Bone Marrow Failure Disease Registry, in accordance with paragraph (3).

“(2) RECOMMENDATIONS OF ADVISORY COMMITTEE.—In carrying out this subsection, the Secretary shall take into consideration the recommendations of the Advisory Committee on Acquired Bone Marrow Failure Diseases established under subsection (b).

“(3) PURPOSES OF REGISTRY.—The National Acquired Bone Marrow Failure Disease Registry—

“(A) shall identify the incidence and prevalence of acquired bone marrow failure diseases in the United States;

“(B) shall be used to collect and store data on acquired bone marrow failure diseases, including data concerning—

“(i) the age, race or ethnicity, general geographic location, sex, and family history of individuals who are diagnosed with acquired bone marrow failure diseases, and any other characteristics of such individuals determined appropriate by the Secretary;

“(ii) the genetic and environmental factors that may be associated with developing acquired bone marrow failure diseases;

“(iii) treatment approaches for dealing with acquired bone marrow failure diseases;

“(iv) outcomes for individuals treated for acquired bone marrow failure diseases, including outcomes for recipients of stem cell therapeutic products as contained in the database established pursuant to section 379A; and

“(v) any other factors pertaining to acquired bone marrow failure diseases determined appropriate by the Secretary; and

“(C) shall be made available—

“(i) to the general public; and

“(ii) to researchers to facilitate further research into the causes of, and treatments for, acquired bone marrow failure diseases in accordance with standard practices of the Centers for Disease Control and Preventions.

“(b) Advisory committee.—

“(1) ESTABLISHMENT.—Not later than 6 months after the date of the enactment of this section, the Secretary, acting through the Director of the Centers for Disease Control and Prevention, shall establish an advisory committee, to be known as the Advisory Committee on Acquired Bone Marrow Failure Diseases.

“(2) MEMBERS.—The members of the Advisory Committee on Acquired Bone Marrow Failure Diseases shall be appointed by the Secretary, acting through the Director of the Centers for Disease Control and Prevention, and shall include at least one representative from each of the following:

“(A) A national patient advocacy organization with experience advocating on behalf of patients suffering from acquired bone marrow failure diseases.

“(B) The National Institutes of Health, including at least one representative from each of—

“(i) the National Cancer Institute;

“(ii) the National Heart, Lung, and Blood Institute; and

“(iii) the Office of Rare Diseases.

“(C) The Centers for Disease Control and Prevention.

“(D) Clinicians with experience in—

“(i) diagnosing or treating acquired bone marrow failure diseases; and

“(ii) medical data registries.

“(E) Epidemiologists who have experience with data registries.

“(F) Publicly or privately funded researchers who have experience researching acquired bone marrow failure diseases.

“(G) The entity operating the C.W. Bill Young Cell Transplantation Program established pursuant to section 379 and the entity operating the C.W. Bill Young Cell Transplantation Program Outcomes Database.

“(3) RESPONSIBILITIES.—The Advisory Committee on Acquired Bone Marrow Failure Diseases shall provide recommendations to the Secretary on the establishment and maintenance of the National Acquired Bone Marrow Failure Disease Registry, including recommendations on the collection, maintenance, and dissemination of data.

“(4) PUBLIC AVAILABILITY.—The Secretary shall make the recommendations of the Advisory Committee on Acquired Bone Marrow Failure Disease publicly available.

“(c) Grants.—The Secretary, acting through the Director of the Centers for Disease Control and Prevention, may award grants to, and enter into contracts and cooperative agreements with, public or private nonprofit entities for the management of, as well as the collection, analysis, and reporting of data to be included in, the National Acquired Bone Marrow Failure Disease Registry.

“(d) Definition.—In this section, the term ‘acquired bone marrow failure disease’ means—

“(1) myelodysplastic syndromes (MDS);

“(2) aplastic anemia;

“(3) paroxysmal nocturnal hemoglobinuria (PNH);

“(4) pure red cell aplasia;

“(5) acute myeloid leukemia that has progressed from myelodysplastic syndromes; or

“(6) large granular lymphocytic leukemia.

“(e) Authorization of appropriations.—There is authorized to be appropriated to carry out this section $3,000,000 for each of fiscal years 2010 through 2014.”.

SEC. 4. Pilot studies through the agency for toxic substances and disease registry.

(a) Pilot studies.—The Secretary of Health and Human Services, acting through the Administrator of the Agency for Toxic Substances and Disease Registry, shall conduct pilot studies to determine which environmental factors, including exposure to toxins, may cause acquired bone marrow failure diseases.

(b) Collaboration with the Radiation Injury Treatment Network.—In carrying out the directives of this section, the Secretary may collaborate with the Radiation Injury Treatment Network of the C.W. Bill Young Cell Transplantation Program established pursuant to section 379 of the Public Health Service Act (42 U.S.C. 274j) to—

(1) augment data for the pilot studies authorized by this section;

(2) access technical assistance that may be provided by the Radiation Injury Treatment Network; or

(3) perform joint research projects.

(c) Authorization of appropriations.—There is authorized to be appropriated to carry out this section $1,000,000 for each of fiscal years 2010 through 2014.

SEC. 5. Minority-focused programs on acquired bone marrow failure diseases.

Title XVII of the Public Health Service Act (42 U.S.C. 300u et seq.) is amended by inserting after section 1707 the following:

“Minority-focused programs on acquired bone marrow failure diseases

“Sec. 1707A. (a) Information and referral services.—

“(1) IN GENERAL.—Not later than 6 months after the date of the enactment of this section, the Secretary, acting through the Deputy Assistant Secretary for Minority Health, shall establish and coordinate outreach and informational programs targeted to minority populations affected by acquired bone marrow failure diseases.

“(2) PROGRAM REQUIREMENTS.—Minority-focused outreach and informational programs authorized by this section—

“(A) shall make information about treatment options and clinical trials for acquired bone marrow failure diseases publicly available, and

“(B) shall provide referral services for treatment options and clinical trials, at the national minority health resource center supported under section 1707(b)(8) (including by means of the center’s website, through appropriate locations such as the center’s knowledge center, and through appropriate programs such as the center’s resource persons network) and through minority health consultants located at each Department of Health and Human Services regional office.

“(b) Hispanic and asian-american and pacific islander outreach.—

“(1) IN GENERAL.—The Secretary, acting through the Deputy Assistant Secretary for Minority Health, shall undertake a coordinated outreach effort to connect Hispanic, Asian-American, and Pacific Islander communities with comprehensive services focused on treatment of, and information about, acquired bone marrow failure diseases.

“(2) COLLABORATION.—In carrying out this subsection, the Secretary may collaborate with public health agencies, nonprofit organizations, community groups, and online entities to disseminate information about treatment options and clinical trials for acquired bone marrow failure diseases.

“(c) Grants and cooperative agreements.—

“(1) IN GENERAL.—Not later than 6 months after the date of the enactment of this section, the Secretary, acting through the Deputy Assistant Secretary for Minority Health, shall award grants to, or enter into cooperative agreements with, entities to perform research on acquired bone marrow failure diseases.

“(2) REQUIREMENT.—Grants and cooperative agreements authorized by this subsection shall be awarded or entered into on a competitive, peer-reviewed basis.

“(3) SCOPE OF RESEARCH.—Research funded under this section shall examine factors affecting the incidence of acquired bone marrow failure diseases in minority populations.

“(d) Definition.—In this section, the term ‘acquired bone marrow failure disease’ has the meaning given to such term in section 317U(d).

“(e) Authorization of appropriations.—There is authorized to be appropriated to carry out this section $2,000,000 for each of fiscal years 2010 through 2014.”.

SEC. 6. Diagnosis and quality of care for acquired bone marrow failure diseases.

(a) Grants.—The Secretary of Health and Human Services, acting through the Director of the Agency for Healthcare Research and Quality, shall award grants to entities to improve diagnostic practices and quality of care with respect to patients with acquired bone marrow failure diseases.

(b) Authorization of appropriations.—There is authorized to be appropriated to carry out this section $2,000,000 for each of fiscal years 2010 through 2014.

SEC. 7. Definition.

In this Act, the term “acquired bone marrow failure disease” means—

(1) myelodysplastic syndromes (MDS);
(2) aplastic anemia;
(3) paroxysmal nocturnal hemoglobinuria (PNH);
(4) pure red cell aplasia;
(5) acute myeloid leukemia that progressed from myelodysplastic syndromes; or
(6) large granular lymphocytic leukemia

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Walker Addresses Wisconsin

One Life Matters - Aplastic Anemia Research: National Guard Preparedness

Doctor's Note Might Get Jail Time

Walker Blocks Solidarity Website

National Guard Preparedness

Walker's Medical Assistance Bill May Affect Helpless

Public Assistance Reform under Walker

Walker's Medical Assistance Reform Act

Federal Poverty Levels (FPL)

One Life Matters - Aplastic Anemia Research: Walker Medical Assistance Hidden Agenda

Insurance Saves Lives

Leading To BMT

Federal Poverty Income Levels - Wisconsin 2011

Federal Poverty Levels (FPL)

Effective February 1, 2011

For each additional person, add:

Hickmann Catheter Infection

Lung Injury After Transplant

Misdiagnosed Aplastic Anemia

Cyclophosphamide Results

Cyclosporine Warning

TOP CANCER HOSPITALS WITH APLASTIC ANEMIA FOCUS

A Study - Transplant Treatment Severe Aplastic Anemia - Journal of American Society of Hemotology

The Aplastic Anaemia–Paroxysmal Nocturnal Haemoglobinuria Syndrome

Clinical Definition of Severe Aplastic Anemia

Allogeneic Stem Cell Transplant

Aplastic Anemia References

Research In Treatments of Aplastic Anemia

When Transplant Treatments Fail

Aplastic Anemia Treatment

Bone Marrow Transplants

Aplastic Anemia

Bone Marrow Aspiration

Treatment

Causes Of Aplastic Anemia

Bone Marrow Biopsy

Biologics: New Miracle Drugs

Donor Matching HLA Test

Donor Matching - Private Typing

HLA Tissue Typing

Blood Transfusions Preliminary To Transplants

Bone Marrow Transplants See Positive Improvements

Graph Host Disease

Bone Marrow Transplant Outcomes & Results

Bone Marrow Typing

Potential Donors - Am I a donor? Can I be a donor?

Blood Type & Bone Marrow Transplants

Cytoxan

Allogeneic Transplants

Aplastic Anemia Pre-transplant Radiation Treatment & Effects

Cord Blood Collection

Donating Umbilical Cord & Cord Blood

Registry

Joining The Bone Marrow Registry

National Bone Marrow Donor Program

Bone Marrow Registry Limitations

State U.S. Representatives

H. R. 1230 Current Sponsors

H. R. 1230 - Support Bill HR 1230