McCloskey’s clinic recently took part in one NIH-funded study evaluating cyclophosphamide on scleroderma lung disease patients. One of her more severe patients, Joseph Berardi, had terrible lung function and decided to enroll in the study. After two years on the drug, Berardi’s lung function has improved dramatically—as was the case for most of the 144 other subjects.
The study’s positive results were published in the June 22, 2006, issue of the New England Journal of Medicine. Still, “that whole time, there was always the threat of funding being cut,” says McCloskey. “The NIH is the primary source of funding for clinical research, and the only way were going to make any advances is through clinical research.”
McCloskey brought Berardi and his wife to the Hill for this year’s Advocacy Day. “Every single office we visited said absolutely they would support the NIH issues after hearing his story.”
The proposed legislation also addresses the dearth of pediatric rheumatologists in the United States. About 300,000 U.S. children have arthritis, with only 162 pediatric rheumatologists to treat them—and 13 states don’t have a single pediatric rheumatologist. Dr. Flood explains that the needs of a child rheumatology patient—with their growing bones and active lifestyles—are fundamentally different from that of an adult. “I frequently joke that children are a different species than adults,” he says. The Arthritis Prevention, Control, and Cure Act supports incentives, such as the repayment of student loans, to encourage health professionals to specialize in pediatric rheumatology.
With arthritis now the leading cause of disability in America, public educational campaigns about disease prevention are of utmost importance. “There are even primary care doctors who aren’t aware of major advances,” Kunkel says. “If you get to your doctor early in your disease, we actually have therapies now that can prevent it from becoming disabling.”
The economic benefits of prevention especially resonated with lawmakers this year. Every patient who is able to work, as opposed to collecting disability payments, reduces the country’s astronomical costs of healthcare. In 2003, U.S. arthritis treatment costs totaled $127.8 billion, up from $86.2 billion in 1997, according to CDC figures. “It’s not too hard to figure out that would be good for the nation,” Kunkel says. “As one legislator told me, this is a no-brainer bill.”
Advocates Head Home with Hopes High
What was Congress’s overall reaction to the advocates?
“It depends on the member,” Hackett says. “Almost all of Congress has people working on health issues; it just may not be their priority.”
