Bone Marrow Initiative
The goal of APAMSA’s National Bone Marrow Registration Initiative is to increase the representation of minority groups, especially API, in the national registry in the effort to offer a cure to thousands suffering from diseases treatable with stem cell transplant.
According to Be The Match, every four minutes, someone in the U.S. is diagnosed with a blood cancer like leukemia. Over the course of each year, more than 30,000 children and adults will be diagnosed and need to find a transplant match. Yet only 30% of patients will find a matching donor within their families. The remaining 70% depend on the Be The Match Registry (also called the National Marrow Donor Program [NMDP] Registry) to search for an unrelated donor or umbilical cord blood unit. These numbers become frighteningly lower for patients of minority descent. For example, the likelihood of finding a match for those of API descent is 41%, compared to 77% for those of Caucasian descent.
Race and ethnicity matter when it comes to finding a matching donor. Patient and donor must have the same human leukocyte antigen (HLA) type in order for a successive transplant. HLA is a type of protein, or marker, found on most cells of your body. It helps the immune system identify which cells belong to the body and which do not. Because HLA is inherited, patients are most likely to match someone of their same race and ethnicity. Despite the millions of already registered donors, the need is never-ending. Some ethnic groups may have more complex tissue types than others and thus, are unable to find a match in the current registry because of the rarity of their tissue types.
Dr. Wendy Chen, a plastic surgeon, shares with us her family’s struggles in finding a bone marrow transplant match. She encourages those who can to become a bone marrow donor to help other families like hers. Click HERE for her interview
Making A Difference
The large disparity for minorities to find a matched donor can be explained by a number of obstacles, including but not limited to:
Lack of awareness of marrow donation among minorities
Mistrust of marrow donation among minority groups
Language and/or cultural barriers
As a group, we can make a difference through
Hosting bone marrow registration drives each chapter’s school. If your chapter is interested in hosting, please contact the Bone Marrow Director at firstname.lastname@example.org.
As of July 1, 2018, Be The Match has moved their registration completely digital. With this new process, chapter drive events will proceed a little bit differently. A local representative from the school’s area will lead engagement activities, including presenting overview information and answering any questions.
The potential registry member will either follow a personalized link by a text to join code, scan a QR code, or enter in the link and complete the registration form online.
A swab kit will be sent out to them directly from the lab.
Educating members about the cause and need for minority representation in the national bone marrow registry
Encouraging members to registry themselves
Change starts with US!
Use our personalized link: https://join.bethematch.org/APAMSA
Dispelling common misconceptions about bone marrow donation
To be eligible to donate, potential donors must be between the ages of 18 and 60 years old and meet the required health guidelines. Potential donors need to collect samples for tissue typing by swabbing the inside of their buccal (cheeks) and mailing back the prepaid envelope. They will also complete a brief health questionnaire and sign a consent form to have their tissue type listed on the Registry.
If chosen to donate, the donor will most likely undergo what is called a peripheral blood stem cell (PBSC) collection. Here’s how it works:
5 days before the actual donation, the donor will get a daily 5-minute injection of a white blood cell growth hormone known as granulocyte colony-stimulating factor (G-CSF).
On day 5, blood will be collected from the donor and filtered through a circulating machine. The machine will collect the stem cells and return the blood to the donor.
On certain occasions, donors may be asked to undergo a bone marrow harvest. This is what most people think when they think about bone marrow transplant. The physician will take bone marrow from the back of the donor’s hip bone during surgery. Usually, donors can return home the same day of the surgery and resume normal activity within 1 week.
The final result? The patient gets a chance of a cure.
Our vision for the future is to close the bone marrow donation gap. By increasing the diversity of the Be The Match registry, we can have a positive impact on the lives of so many individuals affected by bone marrow disease.
Please consider hosting a drive at your school and register today!