People of Color Have Less Chance of Receiving Bone Marrow Transplants that Can Cure DiseasesI. Bone Marrow Transplants Cure Diseases
Sickle Cell anemia, leukemia and dozens of other diseases affecting African Americans and people of color disproportionately can often be cured with a bone marrow transplant. Bone marrow transplants can treat aplastic anemia, autoimmune diseases (including scleroderma and multiple sclerosis), Hodgkin lymphoma, immune-deficiency disorders, inborn errors of metabolism, non-Hodgkin lymphoma, myelodysplastic syndrome, myeloproliferative neoplasms, multiple myeloma and myelofibrosis. African Americans and people of color with these and other diseases have only a 23% or less chance of finding a bone marrow match on the National Registry. Mixed race patients have an even lower chance of finding a match. Compare this to the 41% chance of finding a match for Asian or Pacific Islanders, 46% for Hispanics or Latinos, 57% for American Indian and Alaska Natives, and 77%f for whites. In other words, African American and mixed-race patients with these diseases have a more than 77% chance of dying if the only treatment that will save their lives is a bone marrow transplant. Thousands of people die each year because they can’t find a donor. Ethnicity is the key to a perfect match between donor and recipient. The only reason for these tragic numbers is the lack of bone marrow donors from African American, people of color and mixed-race communities. The solution is simple. We can save lives by having more African American, people of color and mixed-race people registered as bone marrow donors. You could save a life and be a hero by being a donor. Being a donor can be as simple as donating blood platelets. II. Who Can Register to Donate and How to Register Eligible donors must be 18-44 years of age and in general good health. Donors must be willing and committed to donate to any patient they might match. Registration involves completing a consent form in person or on line and a simple cheek swab test. Cheek swabbing is free. Just request a kit online from the Be the Match Registry. The most frequently used method of registration is on line but you can call the Registry and request a packet via hard mail. III. If You Match a Patient in Need, There Are Two Ways to Donate The patient’s doctor chooses the method of donation best for the patient. 80% of the time Peripheral blood stem cell (PBSC) donation is used. This is collecting blood-forming cells for transplants. The same blood-forming cells that are found in marrow are found in the circulating (peripheral) blood. PBSC is a non-surgical procedure, called apheresis. The donation takes place at an experienced facility that participates in PBSC collections. For 5 days leading up to donation you will be given injections of a drug called filgrastim to increase the number of cells in your bloodstream that are used for transplant. Some of your blood is then removed through a needle in one arm and passed through a machine that separates out the blood-forming cells. The remaining blood is returned to you through the other arm. The other 20% of marrow donations take place in a hospital under general anesthesia. Doctors use a needle to withdraw liquid marrow from the back of your pelvic bone. Donors feel no pain or discomfort during the donation. The procedure is out-patient. This is small discomfort to save a life. If you are called as a potential match for a patient your commitment means that you’re willing to take up to 20-30 hours spread over 4-6 weeks to: attend an information session, attend appointments, and donate. You are also committing to keeping your contact information up-to-date so that the registry can find you to quickly to get a blood sample for further match testing. Donors never pay for donating and are never paid to donate. The number of cells donated will not weaken your immune system. Most donors are back to their usual routine in a few days and your marrow naturally replaces itself within 4-6 weeks. IV. 70% Of Donors Are Not Family Members 70% of patients do not have a matching donor in the family. Adding more registry members increases the ethnic diversity of the registry which increases the variety of tissue types available. V. There Are Health Benefits from Diets That Increase Bone Marrow in Donors There are health benefits from diets that will increase your Red Blood Count to make you a more valuable donor. The “Be the Match” registry can give you information on what to eat to increase your Red Blood Count which will, in turn, greatly improve your health. VI. Join The “Be the Match” Registry The ICLA da Silva Foundation, or “Be the Match” Foundation, is the largest, most diverse registry of potential marrow donors and cord blood units in the world. “Be the Match” offers one-on-one support, education and guidance before, during and after transplants and has offices across the United States and Puerto Rico. It is a nonprofit organization under section 501(c) 3 of the IRS Code. You can register on line (Google “Be the Match, the “paperwork” can be completed online using your mobile device or PC) or contact the ICLA/Be the Match organization through the following: ICLA CONTACT: TELEPHONE (718) 938-9840; INTERNET: http://www.icla.org; TEXT: “Cure39" to 61474 to join the Marrow registry Within 7 days the registrant will be mailed a cheek swab kit to complete and return free of charge. Once the kit is returned, you are then added to the database. If you have email, respond to the confirmation email that will be sent to you one hour after you complete the digital registration process. You can get answers to frequently asked questions at https://bethematch.org/support-the-cause/donate-bone-marrow/donation-faqs/. You can also contact “The Project to Save a Life” through the following: John-Michael Lawrence at lawrencejohnmichael9@gmail.com and Rhoda London at diversitydonordrive@aol.com. VII. What You Can Do Besides Being a Donor: If you are not able to donate or are younger than 18 or older than 44 you can: 1. Host an actual cheek swabbing drive in your place of worship, school, business organization; 2. Publicize a digital drive on Facebook or any other social media; 3. Share the information with other groups, family and friends; 4. Make a financial donation in honor of your own good health or in honor of your recovery from and illness. Since swabbing and medical expenses are free, financial donations go to support analyzing the swabs and medical expenses for the donor and recipient; 5. Please join the effort, you can save a life. VIII. MYTHS ABOUT BONE MARROW DONATION MYTH: Donating is very painful. FACT: Donating is less painful than you think. MYTH: Donating involves opening up or removing bones. FACT: This is not true. Most blood stem cell donors (80%) give via PBSC - a process similar to platelet donation. This is a non-surgical, out-patient procedure and no bone is removed. The donor receives a drug for 5 days to increase the number of cells in the bloodstream. The cells are then collected during donation. The donor may experience head or muscle aches that disappear shortly after the donation, and are typically back to their normal routine in 1 to 2 days. The other procedure (20%) is a surgical, out-patient procedure that takes place in a hospital operating room. While the donor is under general anesthesia, the doctors collect marrow from the back of the donor’s pelvic bone. After donation, donors may feel soreness in the lower back. Donors are typically back to their normal routine in 2 to 7 days. MYTH: Donating is dangerous. FACT: There are few risks to donating. MYTH: Donating takes a long time. FACT: It doesn’t take long to save someone’s life. MYTH: Donating is expensive and you need medical insurance. FACT: Donating is absolutely free to the donor. MYTH: Sharing your personal information and DNA is risky. FACT: Be the Match and HIPPA will protect your privacy and confidentiality. MYTH: Asking about a donor’s ethnic background is racist. FACT: Ethnic background is an important factor for matching donors to patients. When it comes to matching human leukocyte antigen (HLA) types, a patient’s ethnic background is important in predicting the likelihood of finding a match. This is because HLA markers used in matching are inherited. MYTH: Gay men cannot join or donate. FACT: Gay men and others in the LGBTQ+ community CAN join the registry and donate. MYTH: Be the Match discriminates against people age 45+. FACT: Age guidelines protect the safety of the donor and provide the best possible outcome for the patient. They are not meant to discriminate. |
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