Event tries to attract black bone marrow donors

• Just 7 percent of registered bone marrow donors are African American
• One-third of all black patients can not find a match on the current registry, study says
• Bone marrow registry drive is scheduled Saturday at Christina Cultural Arts Center in Wilmington

WILMINGTON – It started with an itchy foot. Over the course of three years, the itching spread. Then came the hives, bruises and open gashes. It was a mysterious disease, said the now 34-year-old Tameia Carter. Until it wasn’t.

In 2013, right before Christmas, Carter was diagnosed with cutaneous t-cell lymphoma, or CTCL, a type of non-Hodgkin lymphoma that disfigures the skin and can eventually spread to the blood, lymph nodes and internal organs.

Carter’s case is rare and advanced. As a result, she needs a bone marrow match just to keep pace with her three young daughters and fiancé.

However, for a young African American, finding a bone marrow match can be nearly impossible.

She’s hoping that a bone marrow drive at the Christina Cultural Arts Center on Saturday will help her to find a match and thankful for the support of her family and friends.

Of the 11 million registered bone marrow donors throughout the country, only about 7 percent of the donors are African American, said Betty Kelly, spokeswoman for Be the Match, part of the National Marrow Donor Program, a bone marrow research and philanthropic nonprofit.

As a direct result of those statistics, the foundation touts July as African American Bone Marrow Awareness Month and urges communities to hold marrow drives to encourage individuals to join the bone marrow registry.

Coupled with the low donor participation rate is the fact that individuals with a diverse ancestral heritage have a difficult time finding an exact match, Kelly said.

According to the National Marrow Donor Program, African American patients have the lowest odds of finding a match compared with all other populations. Research compiled by the foundation found that the probability of a Caucasian patient finding a match within the registry is about 93 percent. For an African American patient, that likelihood is 66 percent. Comparatively, Hispanic or Asian patients have a 72 percent and 73 percent chance, respectively.

Additionally, African-American patients with a lymphoma were at most 45 percent as likely as Caucasians to undergo a transplant. And the number of cases only seems to increase. The American Cancer Society estimates there will be 79,900 new lymphoma cases in 2014 alone.

“There’s definitely the fear of donating,” Kelly said. “Most people don’t have a family member who is a match for them.”

Less than 1 percent of parents and children match one another, Kelly said, and less than 30 percent of patients have a sibling match. That leaves 70 percent of patients having to find an unrelated donor.

It only takes a mouth swab to test for a match. Researchers evaluate an individual’s hematopoietic stem cells in the marrow to find a match. It can take about four weeks.

However, patients living with a blood cancer may not survive if finding a match takes years, said Dr. Frank V. Beardell, medical director of Christiana Care Health System’s Bone Marrow/Stem Cell Transplant Program.

“It needs to be done in a few weeks or months,” Beardell said.

There are very few replacement therapies that are effective, he said.

Carter, for instance, has gone through ultraviolet light treatment, radiation, oral chemotherapy and intravenous chemo. But her cancer has spread to her spleen, lymph nodes and tonsils. For her case, a transplant is crucial.

Beardell explained that the transplant is not a surgical procedure; stem cells are collected from the donor and fed through an intravenous line to the patient.

The goal is achieve complete chimerism, he said, when a patient takes on the donor’s blood type. Cell repopulation can begin to happen in three to four weeks, but it can take up to one year before the immune system is strong, he said.

“The idea is that the donor’s immune system establishes in the patient and the immune system grows,” Beardell said.

Carter just wants to be a normal mom. She wants to be able to consistently play with her 1-year-old daughter, Tori, and drive her other two daughters to dance class.

“It’s (the transplant) the only thing that could be a possible cure,” Carter said.

Jen Rini can be reached at 302-324-2386 or jrini@delawareonline.com. Follow @JenRini on Twitter.

Interested in joining the registry?

Check out this weekend’s Marrow Donor Registry Drive

When: 10 a.m. to 4 p.m. Saturday

Where: Christina Cultural Arts Center, 705 N. Market St., Wilmington

Requirements: Individuals must be between the ages of 18 and 44. Health conditions prohibiting donation include those with: HIV; hepatitis; heart disease or cancer; chronic lung disease; diabetes requiring insulin; diseases that affect bleeding; severe and ongoing back problems; autoimmune or neurological disorders like multiple sclerosis or rheumatoid arthritis; being a marrow or organ recipient; significant obesity; current sleep apnea.

Contact: Betty Kelly, Be the Match, bkelly@nmdp.org or (877) 601-1926, ext. 7722