Showing posts with label Bone Marrow Transplants. Show all posts
Showing posts with label Bone Marrow Transplants. Show all posts

Tuesday, March 15, 2011

Send A Letter & Possibly Save A Life

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.

Saturday, March 12, 2011

Summation - Death of People! & Civil Rights?

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:

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

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.
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.

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

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.

Friday, March 11, 2011

Wisconsin Bill Passes

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.

Wednesday, February 23, 2011

Walker's Bill Proposes Permanent Changes

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.

Buffalo Beast

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.

Medical Assistance Reform = Death Sentences By Legislative Pens?

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

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.

Tuesday, February 22, 2011

National Guard Preparedness

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

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

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

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:

  1. study potential changes to the MA state plan and
  2. 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.
  3. 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.
  4. Before promulgating a rule, DHS must submit the proposed rule and any plan developed as a result of the study to JCF for review.
  5. 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.
  6. 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.
  7. 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.
  8. 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.
  9. 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.

Leading To BMT

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.

Saturday, January 1, 2011

Federal Poverty Income Levels - Wisconsin 2011

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

Saturday, October 17, 2009

Lung Injury After Transplant

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

Friday, October 16, 2009

The Aplastic Anaemia–Paroxysmal Nocturnal Haemoglobinuria Syndrome

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

Thursday, October 15, 2009

Allogeneic Stem Cell Transplant

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.