Fact #1: The shortage of diverse donors costs lives Many blood cancer patients lose their lives because no matching peripheral blood stem cell (PBSC) or marrow donor is found in the worldwide registry, despite there now being more than 40 million registered donors from dozens of countries.
The numbers regarding diversity are shocking: 71% of Black People, 71% of multi-racial individuals, 52% of Latino and Hispanic people, and 53% of Asian Americans do not have a perfectly matched donor in the worldwide registry.
The reason matches are so difficult to find for these patients is because their genetic heritage is underrepresented in the registry. This means that people sharing a similar lineage or ancestry have not joined the registry in sufficient numbers.
For example, while more than 12% of the U.S. population is Black, only 4% of Americans on the international registry are Black, and the percentages are similarly proportioned for other peoples of color.
Gift of Life Marrow Registry is on a mission to change these numbers. Our goal is for every person to find their perfect donor when one is needed. To get there though, the organization needs more people to join the registry and commit to help save someone’s life if called upon as a match.
Fact #2: ANCESTRY is the key to a perfect match between donor and recipient Blood stem cell and bone marrow transplants are one-to-one: one person donating to one patient with the same tissue type. We test the donor’s and recipient’s Human Leukocyte Antigens (HLA) to make sure they are a match prior to donation. People get their HLA types from their parents, each parent gives one half to the total HLA profile.
People with the same ethnicities have the best chance of being HLA matches. Looking at who your ancestors were and where they were living generations ago can give doctors a good idea of who might be your perfect match.
When a population is geographically isolated or intermarries within the same group for several generations, common HLA types for that population stay within that group. Even though people today are more dispersed than in the past, you still carry the HLA from your ancestors. Finding a perfect HLA match means finding another person who shares your genetic heritage.
Multi-racial peoples often have rare combinations of antigens in their HLA profiles, making it even more difficult for them to locate perfect matches. Thus, it is urgent that more multi-racial individuals join the registry.
Fact #3: The odds of finding a matching donor can be changed That’s not merely hopeful thinking. Gift of Life knows that these statistics can change, because we’ve already done it.
In 1991, a young man newly diagnosed with Leukemia was told he had no hope of finding a matching donor because he was an Ashkenazi (Eastern European) Jewish man. He only had a 5% chance of finding a life-saving match. That man was Jay Feinberg, and his friends and family refused to accept that the marrow registry was not diverse enough to help. They started a grassroots effort to find a donor for Jay, a four-year search that added more than 60,000 Jewish donors to the registry, and saved dozens of lives.
Jay did get his transplant and went on to found Gift of Life Marrow Registry. In partnerships with other organizations around the world, Gift of Life helped recruit so many donors that today’s chance of a Jewish patient finding a donor is 75%.
Gift of Life helped change the odds for Jewish patients, and we are determined to help every other ethnic group. But that can’t happen without more diverse donors joining the registry.
Fact #4: Donating is as simple as the process of giving blood platelets There are two ways to donate to a patient – peripheral blood stem cells (PBSC) or bone marrow.
More than 90% of transplant requests are for stem cells. In a PBSC donation, blood is drawn from one arm, then an apheresis machine separates out the stem cells needed for the transplant, and the remaining blood returns to the donor through the other arm. This process typically takes four to six hours, and donors can watch a movie, nap, or talk with friends while donating.
Less than 10% of donations are for bone marrow, and these donations are usually requested for children. Bone marrow donations is an outpatient process that takes one to two hours, during which the donor is under general anesthesia while the doctor collects bone marrow from the hipbone. No bone is removed nor are stiches needed.
Stem cells and bone marrow regenerate naturally. If you would like to learn more about the donation process, click here.
Fact #5: You could save a life and become a hero – this is your best chance! Let’s face it, not everyone can be the best star pilot in the galaxy. But that doesn’t mean you can’t save someone’s life!
About one in every 1,000 donors on the registry will someday be called as a possible donor for a patient. Some of those called will turn out to be the best possible match, and will get that miraculous opportunity to save someone’s life. Dana (pictured) could not initially find a donor in the registry because he has multi-racial ancestry. Fortunately, when his stem cell donor Destinee joined the registry, she was quickly found as his match, and a transplant was possible. They may look different on the surface, but they share the same HLA profile and Destinee was able to become Dana's lifesaving hero.
All you have to do to join the registry is give a simple cheek swab and complete a health questionnaire.
Help us give more people a second chance at life: order your swab kit now and join the registry.
If you would like to run a donor recruitment drive in your workplace, community, place of worship, or educational institution, please contact Gift of Life at 561-982-2900. We provide all the supplies and training you need to spread the word and help us bring new donors into the registry.