Because Kennedy is the chairman of the Senate Health, Education, Labor, and Pensions Committee—which is deliberating over the bill—Kunkel is confident the bill will make it to a floor vote this year.
This year, advocates say, passing the bill is more important than ever. Arthritis now affects 46 million American adults. “And the baby-boom generation is now entering retirement,” Kunkel says, “so in the next 10 years, we’re going to see a huge increase of people with osteoarthritis and other kinds of arthritis problems.” Indeed, the Centers for Disease Control and Prevention (CDC) estimates that by 2030, nearly 67 million—that’s 25%—of Americans will have arthritis.
Busy Visit for Volunteers
The ACR advocates—including 22 patients, 21 physicians, and 17 members of the ARHP—arrived in Washington on March 12, and began their full schedule of events at the Washington Court Hotel. They spent the afternoon at a training session, led by two seasoned lobbyists, on how to effectively talk to elected representatives. A staff member from the House Energy and Commerce Committee also dropped by to talk candidly about health priorities in the House.
“They told us the dos and don’ts,” says Joseph Flood, MD, chair of the ACR Government Affairs Committee. The dos: be well informed, unafraid, and above all, brief—Congressmen can usually only give 10- or 15-minute appointments. The don’ts: “Don’t knock another disease, don’t be untruthful,” says Dr. Flood. “It’s not necessary to talk to them about who you voted for or who you contributed money to.”
After the training session, advocates met for dinner and keynote presentation from an animated staffer from the House of Representatives. “It was awesome to be able to socialize with everybody who was fighting for the same cause,” Bates says.
On March 13, the advocates collectively visited 122 Congressional offices; on 21 visits, the advocates met with their actual representatives, as opposed to staff. The biggest issue they discussed was the passing of the Arthritis Prevention, Control, and Cure Act, which focuses on federal funding of arthritis research, recruitment of more doctors into the rheumatology specialty, and public-education campaigns. Federal funding for arthritis research has declined since 2003. Today, National Institutes of Health (NIH) funding amounts to less than $8 per person with arthritis.
A Case for Research and Care
The funding issue is especially critical to Deborah McCloskey, co-chair of the ARHP Advocacy Subcommittee, who for the past 19 years has worked as a nurse at the scleroderma program at the University of Medicine and Dentistry of New Jersey-Robert Wood Johnson Medical School in New Brunswick. Because scleroderma affects only about 300,000 people nationwide, pharmaceutical companies don’t invest in scleroderma research, and the field relies on federal support.
