Donors of Caribbean descent sought for bone marrow registry

For many patients suffering from blood cancers and other blood diseases, a bone marrow transplant is the only cure. But for patients of Caribbean descent, that cure is often out of reach. 

The Caribbean region ranks among the lowest in the world in success rates of finding bone marrow donor matches outside of the family, according to the Caribbean Bone Marrow Registry. 

In an effort to make the life-saving treatment more widely available to individuals of Caribbean descent, the Cayman Islands Cancer Society, in collaboration with the Caribbean Bone Marrow Registry, is encouraging people to register to become bone marrow donors. 

“The more people from our population that are registered, [the] greater chance that a patient from the region will receive a match,” said Arthur Dunk, director of the Caribbean Bone Marrow Registry. 

So far, 400 people have joined Caribbean Bone Marrow Registry, which was established in 2013. Mr. Dunk hopes to get that number up to 100,000. 

“What we’re doing now will be felt in five, 10 and 15 years, the effect will be felt by our children and grandchildren,” he said. 

Finding a match 

Before a person receives a bone marrow transplant, also called a stem-cell transplant, a donor must be found who has identical or nearly identical HLA (human leukocyte antigen)-matched bone marrow. HLA tissue types are inherited, so a person has a better chance of finding a bone marrow match from someone of the same racial or ethnic background. 

Parents are not usually matches; siblings are often the best match, but only 30 percent of transplant patients find a match within their immediate family. Bone marrow registries help connect patients with unrelated HLA-matched donors. 

Although the National Marrow Donor Program in the U.S. has more than 10 million registered donors, certain ethnic populations are underrepresented. 

Caucasians of European descent have the highest probability – 75 percent – of finding an optimal unrelated bone marrow donor, according to a study in the New England Journal of Medicine. Black people in the Caribbean, on the other hand, have a 19 percent chance of finding an optimal bone marrow donor. Only black people of South or Central American descent have a lower chance – 16 percent – of finding an optimal donor. People of Hispanic Caribbean origin have a 40 percent chance of finding an optimal bone marrow donor, and people of native Caribbean descent have a 32 percent chance. 

The registry is dedicated to helping individuals from the Caribbean, Latin America, and beyond who suffer from leukemia, sickle-cell anemia and other blood diseases, and who are in need of a bone marrow transplant or other support. 

Natasha Macfadyen has become something of an expert on bone marrow donations since she was diagnosed with a rare disease of the bone marrow in 2012. Although she did not end up receiving a transplant, she has become an advocate for bone marrow donor registration, and began speaking with the Cayman Islands Cancer Society two years ago about creating a register here. 

Only one in 300 people who register to become a donor is matched with a patient, according to Ms. Macfadyen. If a donor is matched, nine out of 10 donors will donate their stem cells in what Ms. Macfadyen says is a “quick and easy process similar to giving blood.”  

Registration to become a bone marrow donor involves a cheek swab. No blood is taken. The cheek swab sample is then sent to a facility to be type-tested. There is typically a $75 fee to register, which covers the cost of the test. 

At the Sept. 19, the Cayman Islands Cancer Society’s “Conquering Cancer” health fair, which coincided with the first International BoneMarrow Day, 186 donors registered. Kits provided by the Caribbean Bone Marrow Registry, and a $10,000 donation from Maples and Calder covered the testing fee.  

Cayman Islands Cancer Society Operations Manager Jennifer Weber said, “Incredibly, there were people lined up all day long to become donors.” 

Potential donors can come to the Cancer Society office to register. Those who can afford it will be asked to pay the $75 fee, but Ms. Weber said no one will be turned away because they can’t pay.  

Donors of Caribbean descent sought

Caribbean Bone Marrow Registry volunteers Stephanie Scott, Teresa Strab, Leigh Smellie, Arthur Dunk, Suzanne Correy, Tash Macfadyen, Dr. Denise Osterloh and Sophia Scott at the Conquering Cancer Health Fair on Saturday. Michael McGrath, Helen Cronier, Christie Walton and Kerry Ann Phillips also volunteered for the registry Saturday.

Nurse practitioner Joanna Dunk promotes the Caribbean Bone Marrow Registry at the Cayman Islands Cancer Society’s Conquering Cancer health fair on Saturday.

Nurse practitioner Joanna Dunk promotes the Caribbean Bone Marrow Registry at the Cayman Islands Cancer Society’s Conquering Cancer health fair on Saturday.

The likelihoods of bone marrow HLA matches by ethnic background in the U.S. Bone Marrow Registry. – Graphic: The New England Journal of Medicine ©2014

The likelihoods of bone marrow HLA matches by ethnic background in the U.S. Bone Marrow Registry. – Graphic: The New England Journal of Medicine ©2014
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