Massachusetts, New Hampshire Take Aim At Bone Marrow Registry There are allegations that the Caitlin Raymond International Registry, part of the sprawling UMass Memorial Health Care system, misused funds, including spending $40,000 to $50,000 a week on female models to staff donor-recruitment tables. Both organizations are also drawing scrutiny for their billing practices.
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Mass., N.H. Take Aim At Bone Marrow Registry

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Mass., N.H. Take Aim At Bone Marrow Registry


Mass., N.H. Take Aim At Bone Marrow Registry

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Let's talk for a moment about bone marrow registries. These are efforts to find donors with the genetic match to save patients with life-threatening illnesses. But in New England, one such program is under investigation. Prosecutors are looking into a registry that allegedly spent 40 to 50 thousand dollars per week on female models who recruited potential donors. And some of those would-be donors say they were later stuck with big bills. Jon Greenberg of New Hampshire Public Radio has our report.

JON GREENBERG: If New Hampshire Attorney General Michael Delaney has it right, the Caitlin Raymond International Registry is an organization run amok. It's part of the sprawling UMass Memorial Health Care system. The registry has seen explosive growth in donor registrations with a presence in places like the Fenway ballpark and kiosks in shopping malls. Delaney says part of that growth came from booths staffed with models in high heels and black skirts.

Mr. MICHAEL DELANEY (Attorney General, New Hampshire): The model agency is actually sending photographs to the marketing director at UMass for personal selection of those models that are going to go recruit donors to help save people's lives.

GREENBERG: We made repeated efforts to speak to the Caitlin Raymond registry and UMass Memorial health care. They issued a written statement, saying they've stopped using models and have halted donor recruitment in New Hampshire.

But they aren't in trouble for just recruiting. Investigators question their billing practices too. A bone marrow drive is a two-step process. First, they run a cotton swab along the inside of your cheek. You go home and then there's step two. The registry sends those cheek cells to a lab for genetic testing.

Mr. MARC FERLAND: When I got swabbed, there was no idea that any money would change hands, one way or the other.

GREENBERG: Marc Ferland stopped at a registry booth after giving blood at a large Red Cross drive. A month later he got a bill that said he owed over $2,000 to cover the cost of the genetic test. When he complained, it was immediately cut to $760, which he paid out of a health care account offered by his employer.

Mr. FERLAND: When you take money out of my spending account, that's a cost to me.

GREENBERG: Contrary to promises from the Caitlin Raymond registry, people like Ferland with certain kinds of insurance plans found their offer to help save a life was rewarded with a bill. When Ferland complained further, he got a letter offering to pay the bill, but he says he feels manipulated and deceived.

Investigators are targeting another side of the billing. The genetic test that other labs charge 60 or 100 dollars to do are priced by the UMass lab at over $4,000. Under state laws in Massachusetts, New Hampshire and Rhode Island, insurance companies must cover the cost of those tests.

In its defense, the registry has said repeatedly the UMass lab has full control over billing. But Senior Assistant Attorney General Jim Boffetti said the real relationship between the registry and the lab is much closer. Boffetti says it appears the revenues from testing at the lab flowed into the registry.

Mr. JIM BOFFETTI (Senior Assistant Attorney General, New Hampshire): Some of the money that was paid by insurers for these tests was being used for what they would call these recruitment activities.

GREENBERG: Marc Ferland says he feels his good intentions turned him into a victim. And now one thought leaves him uneasy.

Mr. FERLAND: What if I'm a match for somebody? I can save somebody. I'd go on the table to do it, you know. But I want to know that the people behind me are trustworthy. And that's not the case with Caitlin Raymond.

GREENBERG: With potential criminal violations on the horizon, many people worry these events will deter potential donors from helping those registries that have unblemished reputations. And that could cost some people their lives.

For NPR News, I'm Jon Greenberg.

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