June 12, 2006
Dana-Farber patients, staff help stem cell transplant testing law become reality
"I can only imagine coming home from work at night, sitting down to have dinner, and looking into my child's eyes knowing that she will die without a matched donor, but yet not being able to do anything to help her."
With these powerful words, Mark Lanoue — whose 4-year-old daughter, Hristianna, is a Dana-Farber patient and stem cell/bone marrow transplant (SCT) recipient — addressed the New Hampshire State Senate on April 4. He and other family members of Dana-Farber patients from New Hampshire, as well as Institute staff, were there lobbying for a bill that would require insurance companies to cover the cost of testing residents in that state as potential blood stem cell donors.
Hristianna Lanoue
Their efforts were rewarded June 8 when New Hampshire Gov. John Lynch signed the bill into law as Lanoue and several other advocates looked on at the State House in Concord, N.H. To honor the young leukemia patient who helped inspire it, the legislation — officially titled HB 1452 — has been known as "Hristianna's Bill" throughout the yearlong process to get it introduced, endorsed, and passed unanimously by the state senate. Similar laws in Massachusetts and Rhode Island already cover SCT testing for those wishing to join the National Marrow Donor Program.
"This is wonderful news; now we're going to be able to aggressively recruit for donors in New Hampshire," says Eloise Adamson, donor recruiter for the National Marrow Donor Program (NMDP) at Dana-Farber. Adamson helped arrange for testimony in support of the bill and attended the hearings. "We can always use more people in the registry, because there are so many different tissue types we need to match. And when families are trying to find a match, you don't want them to have to worry about the additional stress of finding ways to pay for getting people tested."
Stem cell transplants (which can be done with bone marrow or peripheral blood stem cells) are used to treat several types of cancer, including leukemias, lymphomas, and multiple myeloma, as well as other blood and immune system disorders. To qualify as a potential donor, an individual must first be tested for his or her human leukocyte antigen (HLA) type. HLA markers are a series of proteins that one's immune cells use to differentiate between a person's own cells and foreign substances. The better match a donor's HLA marker is to that of a recipient, the better the chance for a successful transplant free of complications.
"You inherit your HLA from your parents — half from mom, and half from dad," explains Deborah Liney, technical director of unrelated donor/transplant services at Dana-Farber. "Siblings have about a 25-30 percent chance of matching each other. But with families in the United States having less than two children on average, and more blended families than ever, approximately 70 percent of the people who need a transplant get it from an unrelated donor."
'Huge transplant boon'
Even though an individual rarely "matches" with someone tested at their own donor drive, these events help keep the list of potential donors growing.
The National Marrow Donor Program registry contains more than 5.5 million would-be donors, and Dana-Farber's NMDP center has about 42,000 of them. In order to join the program, unrelated donors must be between the ages of 18-61 and in general good health. Run in partnership with Brigham and Women's Hospital and Children's Hospital Boston, the Institute's transplant center celebrated its 1,000th unrelated blood stem cell transplantation procedure last year — the first site in New England to achieve this milestone.
Previously, the best way for New Hampshire residents like the Lanoues to help fund unrelated HLA testing was to organize, raise money for, and hold transplant drives at which people could get tested, and join the donor registry at reduced or no cost. Lanoue, his wife, Litsa, and his extended family went a step further, creating a Web site and a nonprofit organization — Hristianna's Gift — to both solicit registry signups and offer financial support and advice to families seeking donors. The owner of several used-car dealerships, Lanoue has raised more than $60,000 and added more than 1,800 names to the registry by raffling off vehicles, through print and radio ads, and by direct-mail campaigns, in addition to holding traditional drives.
Among those he has helped is Tina Maiorino, a fellow New Hampshire resident whose young grandniece, Carsyn Gilloren, also received her transplant at Dana-Farber. When Maiorino found out that Massachusetts and Rhode Island had laws on the books covering SCT testing, she contacted New Hampshire State Rep. Nancy Johnson and asked, "What's going on here? Why can't we write a bill too?" With Johnson, Lanoue, and other families of transplant patients joining the cause, they did just that.
"In 1990, when I started here, there were 180,000 donors registered in the U.S.; now there are over five million," says Liney. "That growth has primarily been through families paying for drives, so it's a huge boon to the donor program to have insurance companies pick up the cost of testing. These families have done all of us a great service by pushing for this."
Now they are determined to do more. "We need to focus our time on educating communities about the importance of being donors," says Maiorino. "I'd love to see programs started in high schools and colleges so that when kids turn 18, they think of two things — registering to vote, and joining the National Bone Marrow Registry."
- Saul Wisnia
saul_wisnia@dfci.harvard.edu
