110th Congress

Arthritis Prevention, Control, and Cure Act of 2007

S. 626, H.R. 1283

Background

Many people use the word “arthritis” to refer to all rheumatic diseases; however, the word literally means “joint inflammation,” and the many different kinds of arthritis make up only a portion of the rheumatic diseases. Some rheumatic diseases are described as connective tissue diseases because they affect the supporting framework of the body and its internal organs. Others, such as lupus, are known as autoimmune diseases because they occur when the immune system, which normally protects the body from infection and disease, harms the body’s healthy tissues.

In order to expand research and education efforts, Senator Edward M. Kennedy (D-MA) reintroduced legislation introduced by Senator Christopher S. “Kit” Bond (R-MO) in the 109th Congress to require the U.S. Department of Health and Human Services to carry out numerous activities related to the prevention and control of arthritis and other rheumatic diseases. According to the findings section of the proposed legislation, 70 million adults and 300,000 children have some form of arthritis or other rheumatic disease. When introducing the bill, Senator Bond noted that recent advances have resulted in improved treatments for arthritis sufferers but that these advances reach fewer than 1 percent of those affected by the disease. He also mentioned the National Arthritis Action Plan (NAAP), which emphasizes strategies to ensure that timely information and medical care become more widely available to the public, and expressed concern about what he considers a limited commitment to implementing the plan. The legislation does not designate the amount of money to be spent on these directives; it authorizes such sums as may be necessary.

The National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS), the lead National Institutes of Health (NIH) Institute conducting research in this area, supports basic, translational, and clinical research that focuses on broadening the base of scientific knowledge, developing new methods of diagnosis, and developing new therapeutic interventions for children with arthritis and other rheumatic diseases. For example:

• NIAMS supports a new state-of-the-art genomics project that is examining gene expression patterns for different types of childhood arthritis. This research will help improve the methods for diagnosing and predicting disease severity for affected children.
• NIAMS, in collaboration with the National Institute of Allergy and Infectious Diseases, supports a study that is testing the effects of statins (drugs used to lower low-density lipoprotein (LDL), or “bad” cholesterol, levels) against fat buildup in the blood vessels of children with lupus. The researchers hope that the statin treatment will have preventive effects on the arterial fat buildup that may occur in young lupus patients.
• Two separate clinical trials supported by NIAMS are examining therapeutic interventions in children with juvenile arthritis. One trial is investigating osteopenia (reduced bone mass), a frequent complication of juvenile arthritis, and is measuring the effectiveness of daily oral calcium supplementation to increase total body bone mineral density. The long-term goal is to determine the safety and effectiveness of current and new biologic and pharmacologic treatments as alternatives to calcium supplementation in juvenile arthritis patients with osteopenia.
• NIAMS-funded researchers have identified a genetic variation within the interleukin-6 (IL-6) gene that increases susceptibility to systemic juvenile arthritis. They found excess transmission of a genetic variation (-174G nucleotide variant) within the IL-6 gene from parent to child. Children who developed systemic juvenile arthritis at age 5 or older showed significantly higher levels of this variant compared with children who developed the disease before age 5. These findings suggest that there may be distinct genetic profiles for the disease that result in differences in age of onset and disease severity.
• NIH supports several research registries that are collecting and categorizing medical information and genetic data from patients and their families. These registries are a valuable resource for researchers around the world.
• To address the nationwide shortage of pediatric rheumatologists, NIH funds training grants in pediatric rheumatology. These grants fund centers that provide mentoring opportunities and nurture new pediatric rheumatologists.
• The NIH Pediatric Rheumatology Clinic, a specialty-care medical facility dedicated to evaluating and treating children with pediatric rheumatic diseases, provides a training environment for researchers in the field of juvenile arthritis and other rheumatic diseases.

Provisions of the Legislation/Impact on NIH

As introduced, Section 4 of the legislation would amend Title IV of the Public Health Service Act and require the Secretary of Health and Human Services (HHS) to establish an Arthritis and Rheumatic Diseases Interagency Coordinating Committee to coordinate the arthritis and rheumatic diseases research activities of the Federal Government, including NIH. Within 1 year of enactment, the committee would be required to hold an Arthritis and Rheumatic Diseases Summit to provide a detailed overview of current research activities at NIH and discuss potential areas of collaboration between NIH and other Federal agencies. No later than 180 days after the summit, the Director of NIH would be required to prepare and submit a report on the meeting to Congress.

Section 5 of the bill would amend the Public Health Service Act to require the Director of NIH, in coordination with the Directors of NIAMS and other appropriate Institutes, to increase research and related activities on juvenile arthritis. The Director of NIH would be required to award planning grants or contracts for the establishment of new research programs or enhancement of existing research programs that focus on juvenile arthritis. Types of research specified by the bill include studies on genetics, development of biomarkers, and pharmacological and other therapies.

Section 7 of the bill would authorize the Secretary of HHS, in consultation with the Director of NIH, to establish career development awards in pediatric rheumatology.

Additional provisions of the bill would:

• Require the Secretary of HHS to develop and implement the NAAP; fund activities for the control, prevention, and surveillance of arthritis and other rheumatic diseases; and coordinate a national education and outreach program
• Authorize the Centers for Disease Control and Prevention (CDC) to award grants and enter into cooperative agreements for the collection, analysis, and reporting of data on juvenile arthritis. CDC would be required to share the resulting data with NIH.
• Require the creation of a National Juvenile Arthritis Patient Registry to collect specific data for followup studies regarding the prevalence and incidence of juvenile arthritis and capture information on evidence-based health outcomes related to specific therapies and interventions
• Require the Secretary of HHS to increase training and fellowship opportunities for pediatric rheumatologists and establish a pediatric rheumatology loan repayment program
• Require the Government Accountability Office to study the economic impact of arthritis in the workplace within 3 years of enactment of the legislation

H.R. 1283, as amended, deleted the NIH provisions described above. Instead, the bill would authorize the Director of NIH to expand and intensify research on juvenile arthritis and related conditions.

Additional provisions of H.R. 1283, as amended, would:

• Authorize the Secretary of HHS to develop and implement a National Arthritis Action Program
• Authorize the Secretary of HHS, acting through CDC, to make awards for the collection, analysis, and reporting of data on juvenile arthritis
• Require the Secretary of HHS, in consultation with the Health Resources and Services Administration, to increase the number of grants to institutions to support pediatric rheumatology training and to establish a loan repayment program for pediatric rheumatologists

Status and Outlook

S. 626 was introduced by Senator Kennedy on February 15, 2007, and was referred to the Senate Committee on Health, Education, Labor and Pensions. No further action has occurred on this legislation.

H.R. 1283 was introduced by Representative Anna Eshoo (D-CA) on March 1, 2007, and was referred to the House Committee on Energy and Commerce. On September 27, 2008, Representative Frank Pallone, Jr. (D-NJ) offered an amendment in the nature of a substitute on the House floor, which passed by voice vote. No further action has occurred on this legislation.

September 2008