Scientists visit Capitol Hill to ask for funds for psoriasis research
More money needed, they say, to study disease that affects more than 7.5 million Americans
In a whirlwind, two-day visit with more than 20 members of Congress, five of the nation's top psoriasis researchers went to Washington, D.C., in mid-January to ask for more federal funding for psoriasis research.
Psoriasis, which affects more than 7.5 million Americans, is the most prevalent autoimmune disease in the country, yet federal funding is limited. Over the past 10 years, the National Institutes of Health (NIH) has invested less than $1 per person with psoriasis annually, according to the National Psoriasis Foundation.
In December 2009, Congress opened the door for more federal funding for psoriasis when it approved spending $1.5 million to establish the first-ever psoriasis patient registry. The funding will be used by the Centers for Disease Control (CDC) to collect information from thousands of people with psoriatic disease.
The five scientists went to Capitol Hill to ask for further support for psoriasis research. In the nation's capital, they met with more than 20 members of Congress and conducted two briefings – one each in the Senate and the House of Representatives.
Attending the briefings were the staff of key lawmakers who are on committees responsible for the Psoriasis and Psoriatic Arthritis Research, Cure and Care Act (PPARCCA) and for appropriations. The bill is the first comprehensive psoriasis legislation to be considered by Congress and currently has more than 100 co-sponsors.
Outcomes from the researchers' meetings included some promising responses from several offices in support of the bill and the National Psoriasis Foundation's new request for $2.5 million for next year. This additional funding would be used to advance the data collection for the CDC's psoriasis patient registry.
On the Senate side of the briefings, 13 staff representing seven senators held dynamic discussions with the delegation on the definition of psoriasis, the state of psoriasis and psoriatic arthritis research, what can be done to close the gaps, and the importance of a patient registry.
The scientists in attendance were: Dr. Maria Eugenia Ariza, research assistant professor, Department of Environmental Health Sciences, University of South Carolina; Dr. James T. Elder, professor of dermatology, University of Michigan; Dr. Joel Gelfand, assistant professor of dermatology, University of Pennsylvania; Dr. Michelle Lowes, assistant professor of clinical investigation, Laboratory for Investigative Dermatology, Rockefeller University; and Dr. Thomas McCormick, associate director, Murdough Family Center for Psoriasis, Case Western University.
Accompanying the scientists were: National Psoriasis Foundation Board of Trustees Member Chip Newton, who serves as the board's liaison to the Foundation's Scientific Advisory Committee; and Foundation staff members, Sheila Rittenberg, senior director of advocacy and external affairs, and Bruce Bebo, director of research and medical programs.
The scientists expressed enthusiasm over the visits and the importance of psoriasis funding.
“The National Psoriasis Foundation efforts were instrumental in Congress passing unprecedented legislation to fund a psoriasis registry through the CDC,” University of Pennsylvania researcher Dr. Gelfand said. “We met with aides of key lawmakers who were all supportive of continued funding to support a registry for psoriasis research. The registry will further advance our knowledge about psoriasis in many ways critical to helping us take better care of our patients.”
In addition to Capitol Hill meetings, the group met with a team from the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS), the federal agency that supports research into psoriasis and psoriatic arthritis. Meeting with NIAMS director Dr. Stephen Katz and 10 members of his staff, the scientists shared insights, results and key methodologies of their respective studies in psoriasis and psoriatic arthritis. They also answered questions from NIAMS staff on the interpretation of their results and how it added to the understanding of psoriatic disease.
Jan. 22, 2010