BONE MARROW REGISTRY

Kellee Terrell, The Root | 4/1/2017, 12:18 p.m.
Where are all the black bone marrow donors?

“For some black folks, it’s not possible to donate—they are literally trying to make it themselves on a day-to-day basis,” Sanders said. “Also, for reasons that are completely justifiable, there are black people who just don’t trust the registry and have all of these misconceptions about what getting on it entails.”

For example, Sanders said, people often believe that just enrolling calls for an immediate invasive procedure that requires anesthesia.

“At outreach events, people have told me they don’t want to sign up because they think we will be extracting bone marrow from their hip that day. That couldn’t be any further from the truth,” she said reassuringly. “The first step only requires swabbing your mouth, and you don’t even need to attend a community event to join the registry. We can send you a free kit; all you have to do is mail it back in.”

In addition, Sanders noted that potential donors worry about the financial burden of donating and wonder if having health insurance is a requirement.

“The National Marrow Donor Program pays for the procedure, any blood work or testing, and any other medical care associated with the transplant before or after, regardless of whether you have health care. Even if you have to travel to another state and stay in a hotel, we pay for all of that, too.”

Sanders also believes that pop culture plays a role in people’s fear and reluctance.

“[Over the years,] television shows such as Grey’s Anatomy and House and films like Seven Pounds come up with these situations that are totally unrealistic when it comes to bone marrow donation. It’s really irresponsible, because donating is nowhere near that dramatic, yet these myths stop people from wanting to learn more about the process,” she explains.

“There are black people who just don’t trust the registry and have all of these misconceptions about what getting on it entails.” —Addie Sanders

Sanders has a point: There is a cultural belief that providing this type of donation must involve an incredibly intense surgery, when, in reality, around 80 percent of actual donations are nonsurgical and are similar to giving blood.

Meanwhile, having a doctor withdraw marrow from one’s pelvic region accounts for roughly 20 percent of how marrow is donated. With that technique, it’s important to note that it’s done with anesthesia, meaning that no pain is felt during the procedure. Granted, there can be side effects such as back pain, fatigue, insomnia and dizziness afterward, but on average, a donor is back to normal in three weeks.

Journalist Abby West, who also sits on the board of the National Marrow Donor Program, can attest to what it’s like to endure the donation process. Seventeen years after she joined the registry at a local outreach event in Connecticut, she was told in 2014 that she finally matched a patient in need.

“I actually forgot that I was even on the registry,” the mother of two teenagers admitted. But once she got the email, she instantly knew that she wanted to do it.