By Mylika Scatliffe,
AFRO Women’s Health Writer
N’Kiia Stallworth, 42 of Providence, R.I. needs a match. Her multiple myeloma is not an incurable disease. In fact, you could be the solution she needs.
Stallworth and others like her can be cured by a blood stem cell transplant.
Multiple myeloma is a cancer of the plasma cells. As defined by the Center for Disease Control and Prevention (CDC), plasma cells are white blood cells that make antibodies that protect us from infection. In myeloma the cells grow too much, crowding out normal cells in the bone marrow that make red blood cells, platelets, and other white blood cells. Multiple myeloma is the most common type of plasma cell tumor. It develops in the bone marrow and can spread throughout the body.
The challenge for Stallworth is that Black patients have a 29 percent chance of finding a donor match, compared with a 79 percent chance for White patients. White and Black patients searching for a donor have drastically different experiences due to the fact that there simply are not enough registered Black donors.
Be The Match® is an organization that facilitates blood stem cell transplants in efforts to replace a patient’s malformed blood cells with healthy ones. A majority of the time, donations are collected through a non-surgical procedure. Blood is collected from one of the donor’s arms, the needed cells are extracted and the blood is returned to the body. The process is similar to donating plasma.
Stallworth was diagnosed with multiple myeloma roughly 14 months ago. She admittedly went through a lot of emotions upon initially receiving her diagnosis and didn’t even really want to talk about it. Then she found out she needed a blood stem cell transplant.
“I didn’t even know this was a thing until I was diagnosed. We– as minorities– really need to give blood in order for us to have a chance at this life-saving cure, and so no one has to wait for a year or even longer, hoping to get a match,” said Stallworth.
A patient’s chance of having a matched available donor on the registry ranges from 29 percent to 79 percent, depending on the patient’s ethnic background. Because the genetic markers used in matching are inherited, donors are most likely to find a match with someone of the same ethnic background. More than 75 different diseases including leukemia and lymphoma, aplastic anemia, multiple myeloma, sickle cell disease, and immune -deficiency disorders can be cured or treated with a blood stem cell transplant.
Only 8 percent of Be The Match registrants identify as Black or African American.
Erica Jensen, vice president of marketing and a member of the engagement, enrollment, and experience team at Be The Match, said one of her main responsibilities is to increase the diversity of the registry.
“Historically marketing was mostly in White communities and there was not enough emphasis, relationships, and programs to connect with more diverse communities. We are committed to changing that,” said Jensen. “Among other things, we’ve hired more diverse staff, and created an HBCU intern program which is being expanded to include 30 HBCUs.”
Jensen further explained encountering barriers because of medical mistrust because of the way Black bodies have been treated and the history of predatory practices against Black people.
“We are very careful and transparent in answering people’s questions. No, we will not share your DNA with police databases or governmental agencies. Yes, the doctors will hold your safety in as high regard as the recipient patient as the donor patient. No, your stem cells will not be taken to only help White and/or rich people,” said Jensen.
Be The Match makes sure to take care of any needs for a donor. When a match is found everything is made convenient for the donor including choosing a collection center close to the donor. However, if travel and accommodations are needed for the donor, it is covered at no cost to the donor, including a travel companion for the donor if needed.
“More likely than not a donor will just go to a collection center near them. But, for example, if you’re in Nebraska you may need to go to a collection center in Seattle or somewhere in Texas, we will book and cover your accommodations. If you need to take an Uber across town to the appointment, it’s taken care of. If you need to pay a babysitter or dogwalker so you can donate, it’s at no cost to you.”
As noted above, the collection process is simple. Ahead of the collection, the donor receives daily injections for five days to stimulate the body’s stem cells. A donor can go to a center to have the injections completed or be provided a kit to do the injections at home.
About 85 percent of the time donations are achieved through non-surgical means. The remaining 15 percent of the time bone marrow is collected through a surgical outpatient procedure that takes place at a hospital under general or regional anesthesia.
Individuals between the ages of 18 and 40 who meet the health eligibility criteria can join the Be The Match registry by visiting BeTheMatch.org, completing a health history form, and swabbing cheek cells with a home kit sent to the home of the registrant.
They also sponsor in-person “swabbing events” to encourage people to register as donors, and where potential registrants can be educated about the process.
More young people of diverse racial and ethnic heritage are needed to register to help patients in search of a match. People between the ages of 18 and 35 are most requested by transplant doctors, because this age group is shown to have the most potential for successful transplantation.
More importantly, anyone thinking of registering for Be The Match should seriously think about their commitment to the process before registering. There is no legal obligation for a registrant to participate but a last-minute decision not to donate could be life-threatening for a patient.
Less than 50 percent of registrants are able or willing to donate when asked.
“There are two struggles with having enough Black donors: actually getting enough to register, and then when they’ve been matched to a patient, having them follow through with the donation process,” said Jensen. “We’ll contact someone and say they’re a match for a patient in need and they will either ‘ghost’ us or refuse to follow saying they don’t have time, or don’t like needles.”
Donors should be willing to donate to anyone when asked because donations to specific patients are not allowed. All searches of the registry are anonymous, and donor and recipient patients may consent to exchange information one to two years after donation.
Stallworth has pounded the pavement getting people in her area to sponsor swabbing events.
“I’ve placed fliers all over, even on dumpsters to get people to sign up and to get businesses to sponsor swabbing events or allow them to take place on their premises,” said Stallworth. “Even if no match is made for me, I don’t want anyone to have to wait like I’m waiting.”
Anyone ages 18-40 years old can sign up to join the registry by texting “SaveKiia” to 61474 (not case sensitive) or by visiting https://my.bethematch.org/SaveKiia.
Help us Continue to tell OUR Story and join the AFRO family as a member – subscribers are now members! Join here!