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.
Showing posts with label Bone Marrow. Show all posts
Showing posts with label Bone Marrow. Show all posts
Thursday, October 15, 2009
Bone Marrow Transplants
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.
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.
Bone Marrow Aspiration
A bone marrow aspiration occurs when a medical profession withdraws liquid from within the bone.
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Donor Matching HLA Test
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
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
Bone Marrow Transplant Outcomes & Results
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.
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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
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
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
Wednesday, October 14, 2009
Blood Type & Bone Marrow Transplants
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.
Tuesday, October 13, 2009
Donating Umbilical Cord & Cord Blood
For information about donating umbibical cords, please visit: http://www.marrow.org/HELP/Donate_Cord_Blood_Share_Life/index.html
Where to donate cords.
Where to donate cords.
Joining The Bone Marrow Registry
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).
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).
Bone Marrow Registry Limitations
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
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
Monday, October 12, 2009
H. R. 1230 Current Sponsors
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
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
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
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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