New law aimed at helping cancer patients find bone-marrow match

John and Gina Gallivan went out for dinner one Friday night to celebrate the end of the work week. The newlyweds both worked as English teachers at Wethersfield High School, where Gina also coached tennis. They later came home to find an unsettling message on the answering machine.

Gina had seen a doctor for mysterious bruises appearing on her arms and legs. Now, the doctor’s message said Gina’s blood counts were way off and that they should consider a trip to the emergency room that night. A few hours later, doctors at Hartford Hospital told the Gallivans that Gina had a 20 percent chance of surviving the next two weeks.

Doctors diagnosed Gina with an aggressive case of acute lymphoblastic leukemia (ALL) in April 2005. They sent the Gallivans to Boston, where Gina received intense chemotherapy and radiation for the next few weeks. Despite the treatment, Gina’s cancer had a high probability of relapse even if she went into remission. She needed a bone marrow transplant.

The Gallivans soon felt the tremendous emotional and financial burden of finding a donor. They couldn’t predict that their fight to save Gina would also result in a six-year push for legislation to lessen part of this burden for others. John said the couple finally got their wish when Gov. Dannel P. Malloy signed a bill last month requring insurance companies to cover the cost of bone marrow testing, which will take effect this January.

The catalyst for the legislation began as the couple searched for a bone marrow donor in 2005. Doctors tested Gina’s sister for compatibility, but like 70 percent of patients requiring a transplant, they couldn’t find a match in her family. They needed to find a match among millions of strangers in the national bone marrow registry. The Gallivans held drives in Massachusetts and Connecticut, recruiting almost 500 people, but one particular barrier always impeded their Connecticut drives.

“The difference between the drives in Massachusetts and the ones in Connecticut is that the ones in Massachusetts were paid for by the insurance companies,” John said. “There was just no question about it. In Wethersfield, it was a very convoluted process.”

Massachusetts, Rhode Island and New Hampshire all have legislation requiring insurance companies to pay the bone marrow donor testing fee for anyone interested in joining the registry. People searching for a match in Connecticut, however, could only receive coverage to test immediate family members. The test consists of a mouth swab to collect a DNA sample, which requires processing and costs about $60-100 per person.

The Gallivans held one of their drives at Wethersfield High School, where they saw a large turnout, but didn’t want to ask everyone to pay the fee. Already wading through the financial hardship of treatment, the couple had to find a way to pay the bill for the drive: $12,000.

“It’s a lot to ask them to be donors, for one thing, but to ask them to cough up $70 just seemed excessive and ridiculous,” John said. “No matter how good-hearted somebody might be, the fee is definitely a deterrent, especially when you’re younger.”

Gina luckily found a match in a stranger through the National Marrow Donor Program and underwent a transplant in September 2005. She’s now healthy and back to teaching and coaching tennis.

The Gallivans served as one of the driving forces behind the recent bill, called An Act Requiring Health Insurance Coverage for Bone Marrow Testing, that eliminates the $60-100 fee per person. It prohibits insurers from imposing any out-of-pocket cost for initial testing, covers one test per person and requires donors to understand that registering grants the National Marrow Donor Program access to their information. The idea behind the bill wasn’t new to the legislature this year, however. It has faced opposition as a mandate on insurance companies.

In 2006, John Gallivan approached his now-retired state senator, Mary Ann Handley, D-Glastonbury, to tell her about the insurance disparity between Connecticut and other New England states. She agreed to sponsor a bill, but for years, the coverage of the testing fee was lumped in with other mandates on insurance companies. It ultimately proved unpopular and former Gov. M. Jodi Rell vetoed a bill that carried the provision among other health mandates in 2009.

John Gallivan

John Gallivan

State Rep. Russell Morin, D-Wethersfield, said he made it his pet project as a standalone bill this year. The Gallivans testified in favor of the bill last February.

Morin said he understood the Gallivan’s fight for the legislation. A friend from his church fell ill with leukemia years ago and the community wanted to hold a bone marrow drive, even though her prognosis wasn’t good.

“We knew it wouldn’t help, that it was too late, but we wanted to do it for her spirit,” Morin said. “We had to cover the cost of this drive and it was very frustrating for the family of this woman who was dying.”

The measure faced opposition from business groups, which have for years objected to the addition of coverage requirements. Eric George, associate counsel for the Connecticut Business and Industry Association (CBIA), said that while the idea behind free bone marrow testing is laudable, mandates on insurance still pose a bigger problem.

“The problem lies in how many health mandates we have now,” George said. “The issue is the cost. Connecticut is already on the high end of health benefit mandates. We don’t want to see anything else that could encourage employers to drop coverage because they can’t afford the premiums anymore.”

The bill also was opposed by the Connecticut Association of Health Plans, which noted that under federal health reform, the state could wind up shouldering the cost of mandates for coverage that isn’t required by the U.S. Department of Health and Human Services.

The bill passed through the Insurance and Real Estate Committee this year and almost hit a snag in the Appropriations Committee when the language of the bill changed from covering the cost of the test, to covering the cost of the test “for those of whom it is medically necessary.” Morin said he couldn’t pinpoint who changed the language, but it almost killed the bill because the test isn’t medically necessary for anyone who wants to join the registry voluntarily.

“I’m sure it was driven by the insurance industry, but I couldn’t pinpoint the source of the change in the language,” he said. “We saw it and corrected it right away. I figured we should just deal with it on the floor of the House.”

Both Gallivan and Morin agree that bone marrow donation is widely misunderstood, often until it directly impacts someone’s life.

“If you had asked me five or six years ago, I would have no idea what the bone marrow registry is because it didn’t touch me personally,” Gallivan said. “Since then, I recognized what it is, the great work it does, how it saves lives and you really want to get that message out to other people. I don’t think people fully understood that until this year.”

State Sen. Joseph Crisco, D-Woodbridge, co-chairs the Insurance and Real Estate Committee. He said he’s working with the Gallivans, Rep. Morin and some other legislators to spread awareness about bone marrow donation once the bill takes effect in January.

“It’s always been an interest of mine because of the vast potential that it has,” Crisco said. “My hope is that we have a bone marrow testing day at the General Assembly sometime in February. Our whole mission is, how do we make life easier for people facing this hardship?”

“I would love to get the governor to come down and do the mouth swab,” Gallivan said. “It would just be great to get him down there and do that. I think it would be great to draw attention to the issue in such a big way.”