1 General Information about Donating Blood Stem Cells This document contains general information about joining the national Registry and donating blood stem cells.
2 You could be the Questions & Answers
3 Paul joined the Registry while attending Northeastern State University - Tahlequah, Okla. Recruiters from the National Marrow Donor Program (NMDP) had come to his school, a predominantly American Indian university, to ask the students and staff to consider joining the Registry. Two years later, Paul was contacted as a potential match for a patient. With his family s support, Paul donated his marrow to a young woman. Paul remains committed to the NMDP and says he would readily agree to donate for another patient.
4 A Life-Saving Procedure When doctors completed the first successful bone marrow transplant in 1968, their discovery charted a new course for the treatment of leukemia, aplastic anemia and many other life-threatening blood diseases. Rigorous treatment using chemotherapy and/or radiation kills cancerous cells but also destroys bone marrow, which contains immature blood-forming cells. It is the blood-forming cells within the transplanted bone marrow that allow these patients to grow healthy new immune systems, without which they will almost certainly die. This breakthrough gave critically ill people an option that never existed before. Today, the National Marrow Donor Program has facilitated more than 18,000 transplants for patients who did not have a matching donor in their families. The National Marrow Donor Program The National Marrow Donor Program makes life-saving marrow transplants possible for people who do not have a matching donor in their family. The NMDP connects patients, physicians and donors to the resources they need to extend and improve lives. We also conduct research to improve transplant outcomes. With more than 5 million donors and 30,000 cord blood units, the NMDP Registry is the world s largest and most diverse source for the blood-forming cells used in transplantation. 3
5 How the NMDP works The NMDP matches volunteer donors with patients, arranges collections and transportation of blood-forming cells, and manages patient support and research programs. The NMDP fulfills its mission of saving lives through the assistance and support of an international network of donor centers (which educate, recruit and manage donors), recruitment groups (which recruit donors), collection centers (which collect marrow), apheresis centers (which collect blood-forming cells from the blood stream), transplant centers 4 (which perform transplants and care for patients) and laboratories (which conduct tissue typing). What is marrow? Marrow is the soft tissue inside the bones that produces the bloodforming cells that transplant patients need to make healthy new marrow. These immature cells can develop into any of the cells present in the blood stream: red blood cells, white blood cells and platelets. These cells can be collected from the marrow, from the circulating blood (called a PBSC donation) or from umbilical cord blood after a baby is born. Who needs a transplant? Blood and marrow transplants are most frequently used to treat leukemia and other life-threatening blood diseases. Each year, more than 30,000 children and adults in the U.S. are diagnosed with diseases for which a blood or marrow transplant can be a cure. Only 30 percent will find a matched donor in their families. The other 70 percent must search for an unrelated donor.
6 Lupe joined the NMDP Registry in 1996 and was called to be a marrow donor for a woman with aplastic anemia in Lupe donated twice for the patient; first marrow and subsequently PBSC. Second donations are sometimes requested to provide patients with additional cells. Regarding the PBSC donation, Lupe said, On the first and second day that I was given this drug, nothing was noticeable to me. On the third day, I started feeling achy in my joints. By the fourth day, my body felt like the day after I exercise. Going in for the injection each day was quick and easy. Lupe says she would donate again if she was ever a match for another patient.
7 Why is a diverse registry needed? More than 5 million volunteer donors are listed on the NMDP Registry. The NMDP is working to recruit committed individuals from diverse racial and ethnic communities to add new tissue types to the Registry. By diversifying the Registry, the NMDP will be able to improve the chance of finding an unrelated donor for all patients. While the NMDP welcomes everyone who is medically eligible and willing to volunteer, there is a critical need to add more committed donors who identify themselves as Black or African American, Asian, Native Hawaiian or Other Pacific Islander, American Indian or Alaska Native, Hispanic or Latino. What is the chance of matching a patient? The odds vary widely, depending on the rarity of the donor s tissue type. This means a patient may match with several potential donors, and an individual volunteer may never be called. However, a volunteer donor may be the only person who matches a patient the only one who can make a life-saving transplant possible. It is important to keep your contact information updated, to help the donor center find you when needed. 6
8 What happens after a volunteer is identified as a match? Once additional laboratory tests After the donor signs the Consent to have determined that a potential Donate form, the patient undergoes donor matches a patient, the a pre-transplant treatment of volunteer will learn about how the chemotherapy and/or radiation to blood-forming cells are collected kill diseased cells. Because the either from the marrow or from the treatment also destroys the patient s blood stream. Collection from the immune system, the potential blood stream is known as a PBSC recipient will most likely die if he or donation. A volunteer donor will she does not receive the transplant. also learn which donation procedure is being requested. After the information session and a physical examination, the potential donor must decide whether or not to donate. Who pays for the donor s expenses? All medical costs are paid for by the patient or the patient s medical insurance, as are travel expenses and most other non-medical costs. 7
9 Can a volunteer say no? A volunteer donor who is successfully matched with a transplant candidate may decide not to go ahead with the donation process. There are many legitimate reasons for saying no, including illness, the amount of time involved, the risk or even fear. The NMDP s centers always respect the decision of the matched volunteer donor. For searching patients, time is essential. If volunteers decide to join the Registry and their circumstances change (e.g. change in long-term health), it is important for this to be communicated to the donor center. Knowledge of unavailability will avoid time wasted trying to contact potential donors. Also remember that although a volunteer donor may decline at any stage in the process, once he or she signs the Consent to Donate form, the patient begins pre-transplant treatment and will most likely die without the transplant. If one has any doubts about donating, it is best for that individual to delay joining the Registry until certain of the commitment to be available to donate until his or her 61st birthday. Donors who are not fully committed give false hope to patients awaiting transplants. 8
10 What can a donor expect before the collection? While many of the NMDP s donors have described the pre-donation time as exciting, it requires a strong psychological commitment. A physical examination is arranged to ensure that the procedure is as safe as possible for both the donor and the patient. The medical guidelines are the same for both donation procedures. Sometimes, the physical exam identifies an otherwise undetected health problem, indicating that the potential donor is not eligible to donate or that the procedure should be delayed. This is often very disappointing for the volunteer donor, as well as the patient. Those who pass the physical are not asked to make any accommodations in diet, work or social habits before the donation. However, donors are asked to refrain from taking any unnecessary risk that could lead to illness or injury during the period when the patient is undergoing the pre-transplant regimen. Doctors want the donor to be in the best possible physical shape for the donation. 9
11 PBSC Donation Through the NMDP How are cells collected from the blood stream? The blood-forming cells used in transplant are usually found in the marrow, but they are also found in smaller numbers in the blood stream. For a PBSC donation, a donor is given injections of a drug called filgrastim over five days to increase the number of marrow cells in the blood stream. On the fifth day, the circulating blood is removed through a sterile needle in one arm, the blood-forming cells are separated out and the remaining blood is returned to the 10 donor through the other arm. The process is known as apheresis, and is similar to donating platelets at a blood bank. Is PBSC donation painful? PBSC donors may experience bone pain, muscle pain, nausea, difficulty sleeping and tiredness while receiving filgrastim. Bone pain and headaches have been the two most frequently reported symptoms. These effects disappear promptly when the collection is complete. During the apheresis procedure some donors experience a tingling feeling from the drug used to keep the cells from clotting. Others experience chills. These effects go away after the donation is complete. What are the risks of PBSC donation? The safety and well-being of donors and recipients is the foremost concern of the NMDP. Although long-term safety data on filgrastim administration to healthy individuals is limited, several studies have evaluated PBSC donors one to five years after donation and have found no adverse effects.
12 How is marrow collected? Marrow donation is a surgical procedure. The donor enters the hospital either the night before or the day of the marrow donation. Donors remain in the hospital for several hours or overnight after the marrow collection. All donors receive general or regional (spinal or epidural) anesthesia for the procedure. The liquid marrow is removed from the rear of the pelvic bone using a special needle and syringe. This process generally lasts 60 minutes. The amount of marrow taken depends on the recipient s weight, does not affect the donor s white cell or platelet count, and is completely replaced in four to six weeks. Is marrow donation painful? Because anesthesia is used, the collection procedure is painless. Donors can expect to feel some discomfort in their lower back for several days or longer following the donation. Donors have also reported feeling tired and having some difficulty walking. The time it takes to feel better varies from person to person. Most donors are back to their usual routine in a few days. Some may take two or three weeks before they feel completely recovered. What are the risks of marrow donation? As with any surgical procedure, there is a minimal amount of risk with marrow collection. Serious complications are rare but could include bruising at the needle insertion sites, infection, or reaction to anesthesia or transfusion. The NMDP and its centers take many precautions to ensure the safety and well-being of the donor. A number of health questions are asked when individuals join the NMDP Registry to be sure that the volunteers are in good general health. Before actually becoming a donor, a volunteer will receive a physical examination. 11
13 As a reporter and television anchor, Dave is dedicated to informing people about issues that affect them. One of the issues is the need for more racially and ethnically diverse marrow donors. Upon learning about the need, Dave joined the Registry hoping to help give someone a second chance at life. When the NMDP identified him as a match for a 17-year-old boy, Dave said yes. Dave extended his commitment to saving lives by allowing his station to document his donation experience in hopes of encouraging others to join the NMDP Registry. The television crew followed Dave s experience through to the marrow donation, even allowing them to film his marrow collection in the operating room. Dave won a National Excellence in Journalism award for raising awareness among the public of marrow donation.
14 How does a patient receive a transplant? After a patient s marrow has been destroyed through a rigorous treatment of chemotherapy and/or radiation, the patient receives the donated marrow or blood cells intravenously much like a blood transfusion. Once the donated cells enter the patient s circulatory system, it takes about one month to see the first evidence of a graft, meaning that the patient s marrow has begun to work and is producing new blood cells. A noticeable rise in the patient s white blood cell count is the first sign that a graft has occurred. What are the patient s risks? While transplant can be a life-saving therapy, not all patients survive the intensive pre-transplant chemotherapy and radiation treatment. In addition, other complications may result after the transplant, including non-engraftment, rejection, graft-versus-host disease (the donated cells fight the patient s body), infection (as a result of destroying the patient s entire immune system in preparation for transplant) and relapse (the original disease reappears in the marrow). Doctors do not yet fully understand the causes of these complications, however, one thing is clear complications are not caused by anything the donor does. Before transplant, the donor s tissue type is tested to ensure that the transplanted blood-forming cells are the best possible match for the patient. 13
15 Do the patient and donor meet? Volunteer unrelated donation is done anonymously through the NMDP. For at least the first year after the transplant, the donor and recipient may communicate only in anonymous writing through the NMDP system. If both the patient and donor wish to meet after that time, and if circumstances allow, NMDP coordinators may assist in the process. Is joining the Registry the right decision? The decision to participate in the NMDP Registry is worth the most careful consideration. This pamphlet has introduced blood and marrow transplantation and answered some questions that volunteer donors most frequently ask about marrow and PBSC collection. The NMDP encourages prospective volunteers to think carefully before becoming an NMDP volunteer donor. The decision is an individual one. 14
16 In 1990, when Trang joined the NMDP Registry, she wasn t sure when she would donate for a patient in need. Five years later, Trang was called as a match for a complete stranger. She had almost forgotten about her commitment to donate, but was eager to help. My first donation was pretty easy. The pain was nothing compared with my recent child birth! And, when you look at the potential for saving a life, donating marrow was totally worth it. After the first donation, Trang was asked to give a second time to the same patient. Apparently, the patient needed a little more of my marrow to heal. So, I gave it to him. It was no problem. About 8 months after the donation, Trang received an anonymous thank you note and gift from her recipient. Although I ve never met my recipient, and I don t know how he s doing today, I know I helped him live longer. I would definitely do it again.
17 Consider these points before joining the NMDP Registry: NMDP volunteer donors must be willing to consider donating to any patient searching the Registry. Volunteer donors must be between the ages of 18 and 60 and in good general health with no history of cancer, diabetes, heart disease or heart attack. For further specific medical guidelines, please contact the NMDP donor center in your state or region. Registration and tissue typing are only the first step toward becoming a volunteer donor. If called as a potential donor, additional steps will include more blood testing, a medical examination and counseling about the collection procedure. Remember to stay in touch. Change your address and update your health information: National Marrow Donor Program 3001 Broadway St. NE, Suite 500 Minneapolis, Minnesota MARROW-2 OR at your local center: The NMDP is an Equal Opportunity/Affirmative Action Employer. Copyright 2004, National Marrow Donor Program 05/04; #00410