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Marrow donors angry over charity’s high bills

By Liz Kowalczyk
Globe Staff / December 23, 2010

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Joanne Miller, ho lost her own husband to cancer, was thrilled when she saw recruiters for the Caitlin Raymond International Registry signing up people at the Topsfield Fair for bone marrow testing.

“Get a free T-shirt; save a kid’s life,’’ she recalls them exclaiming as she approached the tent with her three children last fall.

Once inside, staff wrote down her insurance information and swiped a cotton swab over the inside of her cheek. “I thought, ‘This is the one really good thing I can do today amid the fried Oreos and carnival rides,’ ’’ she said.

So when Miller received a statement a month later, showing that her insurance company was billed $3,700 for the DNA testing and that she owed an additional $700, she was shocked and angry. Miller complained to Attorney General Martha Coakley’s office and to the Caitlin Raymond registry, which assured her she would not have to pay anything.

Like many potential donors who signed up with the registry, a subsidiary of UMass Memorial Health Care in Worcester, she said yesterday that she felt that her good deed has been tainted by revelations about the nonprofit’s high charges and its aggressive recruiting techniques using flirtatious models.

“I looked up the cost of this test online, it was $40 to $60,’’ said Miller, who lives in Marblehead. “I felt like I’d been robbed.’’

UMass Memorial has suspended its recruitment of bone marrow donors in New Hampshire, Massachusetts, and Rhode Island amid a multistate investigation into the hospital’s use of models in short skirts and high-heels in malls and at public events to entice people to be tested for a potentially life-saving bone marrow transplant for cancer patients and then to charge high rates to insurers for testing the DNA samples.

James Boffetti, senior assistant attorney general in New Hampshire and chief of the Consumer Protection Bureau, said his office is investigating whether recruiters were honest with potential donors about the cost of the testing, among other issues.

Miller said she did not notice models outside the tent at the 2009 Topsfield Fair. But Jennifer Brucker and her husband, who live in Billerica, were approached by a model in an electric blue wig at the Pheasant Lane Mall in Nashua in late November while they were Christmas shopping. The model introduced them to another woman who appeared to be a registry staff member.

“I specifically asked, ‘What does this cost?’ ’’ Brucker wrote in an e-mail. “I was told that the test was $100. If I had health insurance, they would appreciate that I provide that information, so that they could recoup the $100 for the test.’’

When Brucker heard about the recruitment controversy on the news this past weekend, she logged onto the Blue Cross Blue Shield website to see that UMass Memorial had made a $4,336 claim on her account for the bone marrow testing and that her insurer had paid $701.

“I feel like UMass was making a few bucks and preying on people’s emotions,’’ Brucker said in an interview. “If they told me up front about the cost, I would have thought about it a little more.’’

Even though she was not personally charged for the testing, she said that overcharging insurers can have an impact on consumers, if it leads insurers to raise premiums. And, she said, if someone has a high-deductible with money for medical bills in a health care savings account, “that could wipe them out.’’

UMass told Boffetti that it generally has charged insurers like Blue Cross and Harvard Pilgrim Health Care, which have negotiated discounted rates, $700 to $1,500 per person for testing. But for insurers or self-insured employers without discounts, those bills have reached upwards of $4,000.

UMass said in a statement that it does not charge donors.

Miller said Coakley’s office did not resolve her complaint about the registry. The office would not comment except to say that it took “immediate steps to respond to Miller’s complaint, including contacting UMass Memorial to get the full information on her behalf.’’

“UMass Memorial provided us with a waiver signed by Ms. Miller that allowed Caitlin Raymond to bill her insurance company for the service provided,’’ the office said. “We are using the information from her complaint as part of our ongoing review into the conduct of this organization to determine whether laws were broken in the Commonwealth.’’

The Caitlin Raymond International Registry was founded by Joanne Raymond in 1986, following the search for an unrelated bone marrow donor on behalf of her daughter, Caitlin, who eventually received a transplant, but died of complications three months later.

Raymond was paid $169,807 as director of the organization in 2009, according to documents filed with Coakley’s office.

“We should not lose sight of the purpose of the Caitlin Raymond International Registry, one of the largest and most respected blood donor banks, to find donor matches that save lives,’’ UMass said in its statement. “There are currently 4,000 patients waiting for matches, and it takes tens of thousands of donors to find the right match.’’

Brian Macquarrie of the Globe staff contributed to this report. Liz Kowalczyk can be reached at kowalczyk@globe.com.

Correction: Because of a reporting error, this story in Wednesday's Metro section incorrectly attributed some statements to Michael Boo, chief strategy officer for the National Marrow Donor Program. It was James Boffetti, senior assistant attorney general in New Hampshire and chief of the consumer protection bureau, who said that UMass was making money on the tests.