Bone Marrow Donation Research Examines Why Minorities Opt Out (LISTEN)

03/19/2013 09:06 am ET | Updated Mar 19, 2013

While "Good Morning America" host Robin Roberts has boosted the visibility of bone marrow transplants in the the U.S., those affiliated with the blood cancer that often requires transplantation, say much more work still needs to be done -- especially among African Americans.

At the University of Pittsburgh School of Medicine, researchers set out to understand how to begin to close the bone marrow donation gap, conducting a study on why African Americans and other minorities opt-out of transplant registries at rates far higher than whites.

What they found -- that four factors contribute to the high rate of registry dropouts, including religious objections, less trust that stem cells would be allocated equitably, more concerns about donation, and a greater likelihood of having been discouraged from donating -- explains why approximately 60 percent of potential minority donors who register opt out before donation, compared with 40 percent of whites, researchers say.

In an interview on Sunday with KUT Radio's "In Black America," study author Dr. Galen E. Switzer, professor of medicine and psychiatry co-chief and The University of Pittsburgh's VA Center for Health Equity Research and Promotion delved further into what his research found.

"Oftentimes patients will first search within their family for a related donor, but only about 30 percent can find a match" he said, explaining how the other 70 percent are left to rely on a perfect stranger to give them a second chance at life. "One thing that's particularly unique about bone marrow or stem cell donation is that the precision of the match between the donor and the patient has to be much greater than it is for solid organ donation," he added.

But minorities searching national donor registries for potential matches face a twofold disadvantage, host John L. Hanson Jr. noted. Not only is there a higher rate of attrition from these registries among certain racial and ethnic groups, the pool of donors matching their precise blood and tissue type is smaller to begin with.

According to Switzer, whites have a 79 percent chance of finding a match, compared with 33 percent of African Americans, a disparity due largely to ethnic minorities' tendency to have more rare genetic types and to donors opting out.

Religious objections topped this list of reasons why study participants decided not to donate, but others say that myths about the donation process and its side effects is where the problem lies.

In an essay highlighting her personal connection to the cause, Delete Blood Cancer co-founder and New York Daily News contributor, Katharina Harf, explained:

Myths abound that bone marrow donation is extremely painful and fraught with side effects, and many individuals are thus reluctant to even be tested.

The truth is absolute, however. Marrow donation is safe. Registering to become a bone marrow donor is as simple as completing a registration form and swabbing the inside of your cheeks to collect cells for tissue typing. If a person is identified as a match for a patient, he or she will be asked to donate using one of two outpatient methods. The first is peripheral blood stem cell donation, which requires that a prospective donor receives a daily injection of a synthetic protein for four days before and on the day of the collection, when the donor's blood is removed from one arm and passed through a machine that separates out the blood stem cells. The remaining blood is returned to the donor through the other arm. The entire procedure takes about four to eight hours over two days.

The second method is actual bone marrow donation, in which marrow cells are collected from the backside of the pelvic bone — not the spine — using a syringe. Donors receive general anesthesia so no pain is experienced during the extraction, which takes about one to two hours as an outpatient. The donor's marrow is completely replenished within a few weeks. There are a few side effects with both methods, ranging from headaches to bone and muscle fatigue and stiffness.

One person in the United States is diagnosed with a blood cancer -- such as leukemia or lymphoma -- approximately every four minutes, the University Of Michigan Cancer Center notes.

Listen to Hanson's full interview with Dr. Switzer here, and then find out more about how you can join the National Marrow Donor Program.

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