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Stress donor registration, responsibility
November is National Marrow Awareness Month, an observance designed to increase the number of potential donors in the computerized registry maintained by the Minneapolis-based National Marrow Donor Program.
There are approximately 4.5 million people in the register (established in 1987), and about 12,500 transplants have been initiated since. About 3,000 people search the registry and 140 transplants are performed monthly.
"One would think that with 4.5 million donors and only 3,000 people searching the registry, there would be more transplants. Those numbers show how difficult it is to match a patient with a donor," says Molly Ferris, public relations specialist with the National Marrow Donor Program.
When a person is diagnosed with an inherited disorder or blood disease, such as leukemia, that could be cured with a transplant, physicians look at siblings first for a match. There’s a 30% chance a sibling will match. The other 70% of the population must go to the registry to find a match. "After a sibling, the best chance of finding a match is someone within your own race or ethnic group," says Ferris.
The most important message for National Marrow Awareness Month is that people of all racial and ethnic groups should join the registry. Currently, African-Americans have the lowest percentage of matches. A second message that is equally important is that donors need to be committed. "We have people every day who are called to be donors, and they say they have decided they don’t want to do it," says Ferris. When a person has a life-threatening disease, the donor is often the only hope for a cure.
People who want to be in the registry go to a donor center and have their tissue typed. The cost is usually $73 to cover the lab expenses, unless the center has matching funds available that brings the price down. The process takes about 15 minutes and consists of having blood drawn for the lab test and answering health history questions. Currently, all minorities, including Asian, Hispanic, African-Americans, and American Indians, can join the registry at no cost. The need for racial and ethnic diversity is so great the fees have been waived, says Ferris.
The antigens found on the surface of white blood cells and other body tissue are used to match donors and patients. Six out of six antigens are considered a perfect match, but transplants are done if the match is four or five out of six antigens as well.
Teach the details
Potential donors need to know that if their tissue type matches the patient, the transplant physician will decide on the type of transplant, which could be marrow or peripheral blood stem cells. In the traditional marrow method, the marrow containing the blood stem cells is taken from the donor’s pelvic bone while he or she is under anesthesia. In the second method, the stem cells are taken from the peripheral blood similar to a blood donation and spun through a machine to harvest the stem cells. This type of donation requires the donor to take Filgrastim, a drug used to increase the release of stem cells from the bone marrow.
Donors also need to know what side effects they will experience during both procedures. "With the peripheral blood stem cell donation, the side effects come before the procedure, where with the traditional marrow method, they are afterward. There are side effects with both, but neither are a painful procedure," says Ferris. Most people complain of lower back pain following the marrow donation and experience stiffness up to a few weeks after the procedure. Those who undergo peripheral blood stem cell donation experience bone pain and muscle pain prior to the procedure, which is caused by the Filgrastim.
A person must be between the ages of 18 and 61 to be a donor and in good general health to reduce the risks for both the donor and patient. They cannot have a history of cancer or have any infectious diseases, serious back disorders, heart problems, or diabetes. Donors must be free of infections and medications that might hinder a patient’s recovery, explains Ferris. Also, women who are pregnant are prohibited from donating because the marrow donation requires anesthesia and the peripheral blood stem cell donation requires injections of Filgrastim, both of which may be harmful to the fetus.
National Marrow Awareness Month is a good time to provide information for patients and staff as well as donors. "There are a lot of people who are eligible for transplantation that never get into the process. There are various reasons for that," says Ferris. Some physicians who do not have the latest information consider the transplant experimental or they tell African-Americans that they don’t have a chance of finding a match. The National Marrow Donor Program has brochures available for both donors and patients to aid in the education process.
One of the best ways to get the word out is to host a luncheon where the donor and transplant recipient meet for the first time. "A year after the transplant, the donor and patient have an opportunity to meet if they desire, and some do it in a public manner which is very emotional. It is a great way to get across the message," says Ferris. To make arrangements, contact a transplant center in the region of your health care facility, she advises. If a meeting isn’t possible, the center could help arrange to have either a transplant patient or donor come and speak. A list of centers can be found at www.marrow.org.
"People who need transplants do not have a chance without the donor, so it is important for people to realize that donors need to be committed, patients to know they need to search the registry, and doctors to get it started," says Ferris.
For more information about providing education on the marrow donor program, contact:
• Molly Ferris, Public Relations Specialist, National Marrow Donor Program, 3433 Broadway St. N.E., Suite 500, Minneapolis, MN 55413. Telephone: (800) 627-7692. Web site: www.marrow.org.