Lion King star Shannon Tavarez lost her life and her battle against leukemia last Monday, and was laid to rest a week later. Despite her efforts — and those of leukemia patients before her — to increase the number of donors of African descent, there remains a large disparity for African-American cancer patients who cannot find the bone marrow matches that could save their lives.
The disparity is not simply a problem with the number of donors. There were nearly 600,000 African-Americans listed on the Be The Match Registry in 2009 according to the National Marrow Donor Registry. Tavarez’ efforts, along with endorsements from her Lion King co-stars and other celebrities, garnered an additional 10,000 newly registered donors.
However, due to the vast genetic variability among the African-American population, finding an exact match is difficult, requiring an even higher number of donors to increase the chances of finding just one exact match.
The odds are even less when a person is of mixed-race. This was the case for Tavarez, whose mother is African-American and father is from the Dominican Republic. In August, as an alternative, she received a cord blood transplant, which involves using immature cells from a newborn’s umbilical cord. She died before her exact match could be found.
Natasha Collins, a Yale University medical student, whose mother is Irish-American and father is African-American, faced a similar problem. In 2006, she too was diagnosed with AML, or acute myelogenous leukemia, like Tavarez. Following chemotherapy, Collins also received a cord blood transplant and was in remission for 3 years.
When her AML returned in February of last year, large-scale efforts fell short of finding Collins an exact match. Once she became critically ill, her only chance of survival was to use a partial match. She ultimately died that August from complications related to her disease and rejection of the transplant.
Leukemia is a cancer of bone marrow cells. These cells normally grow and mature into blood-forming cells — red blood cells responsible for carrying oxygen to the body, white blood cells that fight infection, and platelets, which help blood to clot.
In leukemia, the blood cells grow abnormally and do not function according to each cell’s appropriate roles. The cells then accumulate both in the blood and in various organs.
Acute leukemias are more aggressive. Untreated, death usually occurs within weeks or months. Chronic leukemias are slower and death occurs months, and sometimes years later, if untreated. The terms lymphocytic or myelogenous are determined by the types of bone marrow cells involved.
Leukemia can be difficult to diagnose. The symptoms are vague, and many patients have a battery of tests before the actual diagnosis is discovered. Abnormalities on routine blood work can give clues, but definitive diagnosis is only by bone marrow biopsy from the pelvic bone.
In his own homemade video, Uzoma Azuh, a Wayne State University medical student diagnosed with AML in September 2005 describes his symptoms# in the weeks prior to his diagnosis — cough, shortness of breath, tightness in his chest, and an itchy rash. He visited several doctors, first treated for pneumonia and a viral infection. It was his blood work that led his doctors to perform a biopsy.
Across the nation, chapters of the Student National Medical Association held donor drives in order to help find Azuh a match. Kits were even mailed to his native country of Nigeria, searching for a genetic match. After seven rounds of chemotherapy, Azuh died the following August before ever finding an exact match.
However, his and the SNMA’s efforts were not in vain. “We stress for donors to be committed to donate to any patient in need,” said Kirsten Lesak-Greenberg, spokesperson for the National Marrow Donor Program, rather than insisting the transplant only go to a particular patient.
Among the 1,600 newly registered donors in that first year for Azuh, three went on to donate to other leukemia patients.
Signing up for the registry is the first step. It is a painless test, involving only a swab along the inside of the mouth. This can occur in-person at a drive, or using a kit sent in the mail after signing up online. There are never costs for the donor.
When a potential donor is contacted, initial blood work is required to further check for compatibility. If the donor is willing to participate and is the best match, there are two ways to donate.
Peripheral blood stem cell donation is one option, used 75 percent of the time, according to Lezak-Greenberg. It is a non-surgical, outpatient procedure. The patients are given a medication to increase the number of immature bone marrow cells into the blood. Then, blood from one arm runs through a machine and is returned into the other arm, removing the needed stem cells. Flu-like symptoms are the most common side effects, lasting a few days.
The other option is a surgical procedure inside of the hospital, where bone marrow is aspirated from the pelvis. Most donors are sore in the lower back for a few days following the procedure.
Recovery time is short for both options, with all symptoms completely resolved in about 3 weeks. Overall, the side effects are minimal compared to the impact a transplant can have on a person who would otherwise suffer a harrowing and excruciating experience until the very end.
Yet, the future remains bleak. “From what we’ve seen, there will continue to be a disparity,” said Lezak-Greenberg, which means Tavarez is unfortunately not the last life leukemia will claim while awaiting the perfect match.