Bone Marrow Advocacy
Bethematch.org is the website for the National Bone Marrow Donor Program. Through the website and the Be the Match organization, people can register to become potential bone marrow donors. Be the Match is the central bone marrow donation registry for the United States. It is a non-profit organization, and it works with doctors, patients, and donors to help match recipients. It does not provide compensation to donors and does not require payment from patients in order to provide matches. Becoming a potential donor registered with Be the Match is an easy process, which requires little initial commitment from potential donors, though any person signing up as a potential donor should be prepared for a high level of commitment is chosen as a match for a patient.
Bone marrow transplants can be used to treat a variety of different medical functions, and the concept of marrow donation has been around for well over 100 years. For example, in the late 1800s, patients received bone marrow orally in order to treat blood disorder (Armitage, 1994). This oral use of blood marrow was not successful, but did reveal a growing awareness that marrow could be used to help treat blood disorders and marrow disorders. This scientific knowledge grew so that, as early as the 1930s, doctors were beginning to experiment with the injection of bone marrow from donors into recipients. The field has expanded greatly in the last few decades, with bone marrow transplants offering significant medical options to people with a variety of diseases.
When discussing donating bone marrow, it is important to realize that there are two broad different types of bone marrow transplants: autologous and allogenic. Autologous transplants are when a donor gives marrow to donate to himself or herself. This type of donation does not require a donor other than the patients. These types of transplants are successful in the treatment of lymphoma (Armitage, 1994). However, there are several other sources of stem cells that can be given in allogenic transplants: synegenic refers to an identical twin donor; human leucocyte antigen (HLA) matched siblings or family members; HLA matched unrelated donor; HLA antigen mismatched donor; haploidentical donor (HLA haplotype matched); and umbilical cord blood donor (Clark & Craddock, 2007). Allogenic transplants occur when a person other than the donor donates bone marrow to another person. While siblings provide the best opportunity for a bone marrow match, the reality is that most people in need of allogenic marrow donations do not have a sibling who will match them. Therefore, bone marrow registries are an important way to match recipients and donors.
Bone marrow donations can be used to treat a variety of diseases and, in some circumstances may offer the only cure for patients with certain diseases. Several types of leukemias and lymphomas are treatable by bone marrow transplant, which can even cure them (National Marrow Donor Program, 2013, Diseases). It can also be used to treat a variety of bone marrow and blood related diseases, including: severe aplastic anemia, Fanconi anemia, paroxysmal nocturnal hemoglobinuria, pure red cell aplasia, and amegakaryocytosis / congenital thrombocytopenia (National Marrow Donor Program, 2013, Diseases). Bone marrow transplants may be used to combat inherited immune system disorders such as: all types of severe combined immunodeficiency (SCID) and Wiskott-Aldrich syndrome (National Marrow Donor Program, 2013, Diseases). Bone marrow transplants may treat diseases that impact red blood cell function (hemoglobinopathies), such as: beta thalassemia major, sickle cell disease, Krabbe disease (GLD), Hurler syndrome, adrenoleukodystrophy (ALD), metachromatic leukodystrophy (MLD), myelodysplastic syndromes, and myeloproliferative disorders (National Marrow Donor Program, 2013, Diseases). Bone marrow transplants have also been used to treat: multiple myeloma; plasma cell disorder; familial erthrophagocytic lymphohistiocytosis and other histocytic disorders; and other cancers and malignancies (National Marrow Donor Program, 2013, Diseases).
While it is possible to match those who need bone marrow donations with unrelated donors, the matching process can be arduous. In many instances, patients and family members are left in a difficult scenario, aware that a bone marrow transplant is needed and without a potential donor for the recipient. This can result in people seeking to educate others about bone marrow donation and asking people to sign up and be tested for the registry (Attwood, 2004). In some instances, these please for donors are successful. However, in other instances they are not, and people miss a possible cure for a terminal disease because of a lack of matched donors. Be the Match and the National Marrow Donor Registry aim to reduce the likelihood that a person who can be saved via a bone marrow donation will die because of lack of an available donor. The goal of the National Marrow Donor Program is to maintain a registry of people willing to donate their bone marrow, which can then be matched with patients in need of bone marrow donations.
Becoming a bone marrow donor is a way for a person to save the life of another person. The process itself is relatively simple. A bone marrow transplant involves taking the healthy blood-forming cells, either directly from a donor’s marrow or from their blood stream, and placing them in the bloodstream of a patient. Once transplanted, these cells then form healthy blood components: red blood cells, white blood cells and platelets. “Patients receive high doses of chemotherapy to prepare their body for the transplant. Then on transplant day, the patient receives the donated cells in a process that is like getting blood or medicine through an intravenous (IV) catheter, or tube” (National Marrow Donor Program, 2013, How bone).
Becoming a bone marrow donor is also a relatively simple process. Through a simple cheek swab, a potential donor can have his or her bone marrow information stored in a national registry. When a potential recipient match enters into the registry, the preliminary match receives further testing for compatibility and a bone marrow transplant is arranged. Of the volunteers in the national donor registry, approximately 1 in 540 is eventually chosen to become donors (National Marrow Donor Program, 2013, FAQs). If a potential donor is chosen, the donor needs to make a 30-40-hour commitment over an approximately four to six-week period of time in order to go to appointments and make arrangements to provide the donation to the patient (National Marrow Donor Program, 2013, FAQs).
The donation process itself depends on what type of bone marrow procedure is conducted on the patient. First, marrow donors can actually donate through peripheral blood cell donation or through bone marrow donation; peripheral blood cell donation is the less painful and less time consuming of the two procedures . “Peripheral blood cell (PBSC) donation involves removing a donor’s blood through a needle in one arm. The blood is passed through a machine that separates out the cells used in transplants. The remaining blood is returned through the other arm” (National Marrow Donor Program, 2013, FAQs). For PBSC donation, the donor receives granulocyte-colony stimulating factor (G-CSF) in order to raise the peripheral blood white cell count (Clark & Craddock, 2007). High dose GSF not only raises the peripheral white blood cell count, but also causes CD34+ stem cells to migrate from the marrow into the blood (Clark & Craddock, 2007). After four or five days, the donor then undergoes a leukapheresis procedure to collect white cell cells and CD34+ stem cells from the blood (Clark & Craddock, 2007). This procedure is much easier on the donor and the recipient than traditional bone marrow donation. “Compared with bone marrow as a graft, peripheral blood stem cells (PBSCs) provide faster blood count recovery and better immune reconstitution post-transplant. PBSC collection is a day-case procedure, which avoids anaesthesia and there is no evidence of long-term effects from G-SCF administration to healthy volunteer donors” (Clark & Craddock, 2007). The donors may experience some side effects, including: myalgia, bone pain, and headache (Clark & Craddock, 2007). In addition, if PBSC does not yield sufficient marrow cells, the donors may need to have their marrow harvested through traditional techniques (Clark & Craddock, 2007).
Donating actual bone marrow is a more complicated process and involves a higher commitment. Traditional bone marrow donation is a surgical procedure, and, as such, has some risks for the donor. During a traditional bone marrow transplant, the liquid marrow is taken from the donor’s bones; specifically from the back of a donor’s pelvic bones. This is done with a needle. The process itself is painful, because the donor is anesthetized during the extraction. However, “most donors feel some pain in their lower back for a few days afterwards” (National Marrow Donor Program, 2013, FAQs).
Regardless of how marrow is obtained, there is an inherent risk of rejection with any bone marrow donation. Prior to a marrow donation, high dose chemotherapy is employed to dramatically weaken the recipient’s immune system, so that the bone marrow donation has less chance of being rejected. However, rejection is always a possibility. This rejection is lumped under the name Graft vs. Host Disease (GVHD) and encompasses a range of immune responses that can compromise the ability of the bone marrow graft to function within the recipient’s body. However, “manipulation of a stem cell product may be performed in the allogenic setting to deplete the graft of donor T cells and reduce the risk of GVHD. Techniques for this include: Immunomagnetic T-cell depletion; Immunomagnetic CD34+ cell selection; In vitro antibody depletion, for example the anti-CD52 antibody alemtuzumabâ€¦, In vivo T-cell depletion with alemtuzumab or anti-thymocyte globulin” (Clark & Craddock, 2007). There is a problem with these advances; for example, one complication of strategies aimed at reducing GVHD is that some of them may increase the risk of relapse of the initial disease.
In fact, the risk of rejection is one reason that some suggest that donating to non-family member is not a wise idea. There is a significant devotion of time and energy by the donor that does not come with a guaranteed outcome of long-term success for the recipient. To understand this argument, one must understand both the acute and chronic conditions associated with GVHD. “Acute GVHD has its onset at or near the time of engraftment, and is defines as occurring <100 days after transplant. It is characterized by a skin rash, liver function test abnormality and diarrhea” (Clark & Craddock, 2007). Chronic GVHD occurs >100 days after transplant is actually the “most common late complication of long-term survivors of allogenic SCT” (Clark & Craddock, 2007). It is a complex, multi-system disorder, and patients suffering from chronic GVHD may require long-term immunosuppressive therapy (Clark & Craddock, 2007). Complications from chronic GVHD can result in complex immune deficiencies and are the major cause of death in transplant recipients (Clark & Craddock, 2007).
The bone marrow registry program is a voluntary program, which has implications on several levels. First, the number of potential donors is relatively low, so that a patient in need of bone marrow almost certainly has a match available, but may never meet that match because the person or persons who match them have failed to register as bone marrow donors. This is particularly true in the case of minority patients because race and ethnicity can impact the likelihood that a person will be a bone marrow match, and minorities are less likely to register as donors than non-minorities.
The case of Daniel De-Gale provides an excellent example of why people, especially minorities, should registers as potential bone marrow donors. Daniel was six years old when he contracted leukemia. As a black child, his chance of finding a marrow donor was much lower than if he had been white; the odds of a white person finding a marrow donor are approximately 1 in 5, contrasted to 1 in 250,000 for a black person (McCaffrey & Walsh, 2008). His parents sent out a plea for potential donors to register, because, at that time, in the United Kingdom, there were only 500 black or mixed race potential donors among the 285,000 registered potential donors (McCaffrey & Walsh, 2008). Daniel’s parents set up the African Caribbean Leukaemia Trust to encourage blacks to register as potential marrow donors, and by 2008 there were 22,000 registered black potential marrow donors on the registry. Daniel had to wait six years for a donor (Bone Marrow Wait Over, 1999). He died nine years later.
The fact that bone marrow donation is voluntary provides a complicated moral and ethical dilemma. Some people believe that bone marrow donors should be compensated for their donations, which, in many ways, is a compelling argument because the time commitment donors must make may frequently result in lost wages. The dispute over whether or not bone marrow donors should be compensated is part of a larger debate regarding the ethics of buying and selling organs, in general. However, bone marrow differs from other organs in that the risk to donors is relatively small and donors are capable of reproducing the marrow, which does not exist, for example, when one donates a kidney.
The debate over whether bone marrow donors could be compensated actually became a legal dispute. In October 2009, a group of cancer patients, parents, and bone-marrow-donation advocates brought suit against the government over a federal law that banned the buying and selling of body parts, including bone marrow (Park, 2012). The plaintiffs were led by a parent of three children with bone disorders who needed bone marrow for treatment. The plaintiffs argued that patients who are potential bone marrow recipients often die while waiting to be matched because of a scarcity of donors. They argued that allowing payment for those donations would be one way to ensure a more continuous supply of marrow. The U.S. Court of Appeals for the Ninth Circuit agreed with them, ruling that people should be able to be compensated for bone marrow donations (Park, 2012). However, this court ruling, which only impacted the Ninth Circuit, but was not challenged by the President’s Administration has subsequently been challenged by the Administration. The law that was at the heart of the challenge was able to be challenged because some marrow could be harvested through the blood. As of two days ago, the government “proposed a regulation to keep the ban intact by rewriting some legal definitions to clarify that it covers marrow-producing stem cells no matter how they’re derived” (Neergaard, 2013). The result is that bone marrow donation in the United States will almost certainly remain a matter of volunteer donors being matched with recipients for the foreseeable future.
Bone marrow donation is, quite simply, a way to save a life. There are a wide variety of medical conditions where bone marrow transplants are the only means of saving a patient’s life or greatly improving quality of life for the patient. Moreover, bone marrow donation is a relatively simple process for the donor. To become a potential donor, one need only submit a cheek swab to the bone marrow donor program. If selected as a donor, the donor may need to submit blood or undergo surgical bone marrow removal. The time commitment for potential donors is relatively significant, but not when one considers that the donation literally has the potential to save a life. Moreover, while some may feel that donors should be compensated, which might eliminate the need for a volunteer registry, the current legal atmosphere in the United States suggests that such compensation will not occur in the foreseeable future. As a result, the numbers of potential donors will probably remain relatively low. Therefore, people should sign up as potential donors on Be the Match, thus increasing the likelihood that patients will find donor matches.
Armitage, J.O. (1994) Bone marrow transplantation. The New England Journal of Medicine,
Attwood, K. (2004). Plea for Marrow Donors: First Edition. The Independent: 22. 2004. Print.
Bone Marrow Wait Over: FINAL Edition. (1999). The Independent: 5. Print.
Clark, F. & Craddock, C. (2007). Chapter 12: Stem cell transplantation. In D. Povan Ed. ABC
of clinical haematology, 3rd ed. (pp. 67-71). Malden, MA: Blackwell Publishing Ltd.
McCaffrey, J. & Walsh, J. (2008). “Daniel helped us beat the odds; Exclusive brave victim who gave black cancer patients hope.” The Mirror. Retrieved November 29, 2013 from highbeam website: http://www.highbeam.com/doc/1G1-186796701.html
National Marrow Donor Program. (2013). Diseases treatable by transplants. Retrieved November 26, 2013 from Be the Match website: http://bethematch.org/Transplant-/How-transplants-work/Diseases-treatable-by-transplants/
National Marrow Donor Program. (2013). FAQs about joining. Retrieved November 26, 2013
from Be the Match website: http://bethematch.org/Support-the-Cause/Donate-bone-marrow/Join-the-marrow-registry/FAQs-about-joining/
National Marrow Donor Program. (2013). How bone marrow transplants work. Retrieved November 26, 2013 from Be the Match website: http://bethematch.org/Transplant-Basics/How-transplants-work/
Neergaard, L. (2013, November 17). Gov’t to keep ban on paying bone marrow donors.
Retrieved November 28, 2013 from ABC News website: http://abcnews.go.com/Health/wireStory/govt-ban-paying-bone-marrow-donors-21026081
Park, A. (2012, July 2). A court allows payment for bone marrow. Should people be able to sell their parts? Retrieved November 28, 2013 from Time Magazine website: http://healthland.time.com/2012/07/02/a-court-allows-payment-for-bone-marrow-should-people-be-able-to-sell-their-parts/
Rubin, Rita. (2010). A bone marrow price tag?: Lawsuit argues that lives would be saved if donors were compensated. USA Today: B.7. Print.
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