Supporters lobby Congress to save bone-marrow funding

McClatchy Washington BureauJuly 18, 2013 

— Fifteen-year-old Anthony Arroyo likely would have died if not for the bone marrow transplant he received, thanks to a group now facing federal funding cuts.

The teenager leads an almost normal life since his transplant in 2004, but still suffers from fanconi anemia, a rare, incurable genetic disorder he was diagnosed with at age 3.

“I was in a big bubble, a room with a plastic line,” Anthony said, in an interview, recalling the transplant he had when he was 6. “I couldn’t go anywhere, it was just bizarre.”

The Arroyo family used a nonprofit organization called Be the Match to find a donor, a process that can be nearly impossible since bone marrow matches are so rare.

“I couldn’t say where we’d be today because we wouldn’t have had a donor, we wouldn’t have had someone to save his life,” said Juanita Arroyo, Anthony’s mother, on Thursday. “Medications can only go so far. Be the Match was literally a lifesaver.”

Dr. Jeffrey Chell, chief executive officer of the National Marrow Donor Program, which operates Be the Match, was on Capitol Hill Thursday with bone marrow recipients like Anthony to meet with legislators, hoping to lessen cuts to the organization.

If their appeal doesn’t work, sequestration – a series of across-the-board, automatic spending cuts in government services – will slash $3 million from their budget. That $3 million comes out of a total budget of $360 million – $23 million of which comes from the federal government. Since the organization is a nonprofit, every penny cut is a direct blow to how many people the organization can help. The sequester cuts $1.2 trillion over 10 years from federal programs overall, with some exceptions.

While the help the group currently doles out is substantial, it still only covers half the need in the country, according to Chell. It tests 400,000 donors and performs 6,000 bone marrow transplants each year, when the need is for twice that many.

That $3 million cut could mean 10,000 to 20,000 fewer donors tested per year, since each donor costs $65 to test, not including the costs of recruitment.

And with more than over 10 billion combinations of chromosomes – more combinations than there are people on Earth, meaning some people have absolutely no match in the world – testing as many people as possible is critical, said Chell. It’s even more so for minorities, since they have smaller populations in the U.S.

“Probably about 9 percent of Caucasians don’t have a match, and about 30 percent of African-Americans don’t have a match and other ethnicities are in between,” Chell said. “So even with 10 million people in our registry and another 10 million people at registries worldwide, we still don’t have a match for thousands of people.”

Other groups perform the same service of matching bone marrow recipients with donors, but Chell said those organizations are small and only cover 1 or 2 percent of what Be the Match does. His group also helps needy recipients with costs associated with transplants, conducts research and fronts the cost of the surgery for donors until a transplant center pays them back. All costs associated with transplants can be anywhere from $500,000 to $750,000.

Juanita said she couldn’t imagine what her life would be like if cuts to Be the Match had kept her son from being matched with his donor.

“It could be me next time, it could be someone in my family, it could be you,” she said. “Without Be the Match, some people aren’t given that second chance at life.”

Email: Kirby@mcclatchydc.com; Twitter: @kateirby

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