108th Congress

“Arthritis: A National Epidemic”—Hearing Before the Senate Health, Education, Labor and Pensions Subcommittee on Aging (Senator Christopher Bond [R-MO], Chairman)

June 8, 2004

Witnesses:

Panel I

• Dr. Joe Sniezek, Chief, Arthritis Program, CDC
• Dr. Susana Serrate-Sztein, Chief, Rheumatic Diseases Branch, NIAMS, NIH

Panel II

• Kalea Kunkel, Patient, Oregon, Missouri
• Virg Jones, Patient, Kansas City, Kansas
• Dr. Deborah Rothman, American College of Rheumatology, Springfield, Massachusetts
• Dr. John Klippel, President and CEO, Arthritis Foundation, Atlanta, Georgia

The purpose of the hearing was to provide relevant background information for S. 2338, the Arthritis Prevention, Control, and Cure Act of 2004. Members attending in addition to Senator Bond were Senators Barbara Mikulski (D-MD) and Patty Murray (D-WA). Senators Bond and Mikulski, who opened the hearing, spoke about their personal and family experiences with arthritis, the effect of the disease on individual patients, and the cost to the health care system. They also expressed support for S. 2338, introduced by Senator Bond on April 22.

Panel I

Dr. Sniezek’s testimony centered on the burden of arthritis on American society and CDC activities to improve quality of life. He described CDC-funded state-based programs designed to reduce the burden of arthritis and improve quality of life for people with arthritis. He also described a CDC awareness campaign called, “Physical Activity: The Arthritis Pain Reliever” as well as strategies for disease self-management. He noted that the National Arthritis Action Plan guides many of the CDC’s efforts and that the agency works closely with the Arthritis Foundation.

Dr. Serrate-Sztein highlighted some of NIAMS’ research programs, recent advances and new NIH initiatives in arthritis research. She spoke of an NIAMS-supported multidisciplinary clinical research center at the Children’s Hospital Medical Center in Cincinnati, which focuses on juvenile rheumatoid arthritis, juvenile fibromyalgia and juvenile dermatomyositis. Also noted was the NIH Pediatric Rheumatology Clinic located at the NIH Clinical Center in Bethesda, MD. Highlights of research advances included a better understanding of inflammatory mechanisms that lead to joint destruction and the discovery of genes that underlie the susceptibility to rheumatic diseases. Initiatives discussed included the Osteoarthritis Initiative, a collaborative effort between several NIH components and the private sector to identify biomarkers related to the onset and progression of disease.

During the question and answer session, Senator Bond asked about the most promising areas in arthritis research. Dr. Sniezek explained that the CDC is promoting physical activity and disease self- management strategies. Dr. Serrate-Sztein highlighted three areas that could benefit from expedited efforts to accelerate research: genetics, biomarkers of disease, and chronic pain and the measurement of patient-reported outcomes. Senator Bond expressed interest in NIH spending on pediatric rheumatic diseases.

When Senator Bond asked if the legislation should be amended to promote physical activity, Dr. Sniezek replied that although the bill contained such provisions, encouraging people to be physically active is the challenge. Dr. Serrate-Sztein also provided a brief update on research related to fibromyalgia, per Senator Bond’s request.

Senator Mikulski’s questioning focused on public awareness and whether current communications programs are effective. Dr. Sniezek commented that CDC’s state programs are fairly new and that the agency’s health communication campaign has been implemented in some states and is doing well. Senator Mikulski also stated her belief that physicians need to be better educated about arthritis.

Senator Murray expressed her concern that Medicare rules restrict the use of new treatments for arthritis. She also wanted assurance that women are included in arthritis clinical trials. Dr. Serrate- Sztein stated that women as well as minorities were represented in NIAMS clinical trials and across NIH. At Senator Murray’s request, Dr. Serrate-Sztein touched on several NIAMS-supported projects to identify those at risk for arthritis.

Panel II

The second panel consisted of two patients, Ms. Kunkel and Mr. Jones, who described their experiences living with arthritis and other rheumatic diseases; Dr. Rothman, a pediatric rheumatologist who showed film clips of children with arthritis before and after treatment; and, Dr. Klippel who commented on several provisions in the bill.

Senator Bond asked Dr. Rothman what new medications are available for arthritis sufferers. Dr. Rothman spoke about the use of cytokine blockade to decrease inflammation in children as well as the drugs etanercept and infliximab, which dramatically improved the conditions of some children. However, she noted that there is no effective treatment for systemic on-set juvenile rheumatoid arthritis. She also described the difficulties with children on multiple medications and those who are frequently hospitalized.

Senator Mikulski stated her interest in determining the prevalence of juvenile arthritis and the possibility of amending the legislation to determine how many suffered from this condition. She also expressed her support for section 6 of the bill to train physicians in pediatric rheumatology as well as a loan repayment program for those who specialize in this field.

At the conclusion of the hearing, Senator Bond encouraged attendees to provide comments on the bill.