109th Congress

Arthritis Prevention, Control, and Cure Act of 2005

H.R. 583, S. 424

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 comprise just 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 own healthy tissues.

In order to expand research and education efforts, Senator Christopher S. "Kit" Bond (R-MO) and Representative Charles "Chip" Pickering, Jr. (R-MS) reintroduced legislation to require the U.S. Department of Health and Human Services (DHHS) 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. 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 Institutes of Health (NIH) 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:

• NIH 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 to improve the methods for diagnosing and predicting disease severity for affected children.
• NIH supports a study that is using statins-drugs used to lower low-density lipoprotein (LDL), or "bad" cholesterol, levels-to test their effects 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 the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) are underway that are examining therapeutic interventions in children with juvenile rheumatoid arthritis (JRA). One trial is investigating osteopenia (reduced bone mass), a frequent complication of JRA. This clinical trial measures 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 alternative treatments to calcium in JRA patients with osteopenia.
• 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.
• The NIH Pediatric Rheumatology Clinic, a specialty-care medical facility dedicated to evaluating and treating children with pediatric rheumatic diseases, provides an environment to train researchers in the field of juvenile arthritis and other rheumatic diseases.

Provisions of the Legislation/Impact on NIH

• Section 4 of the bill would amend Title IV of the PHS 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 NIH and the Federal Government. Within 1 year of enactment, the Coordinating 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 PHS 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 include studies on genetics, development of biomarkers, and pharmacological and other therapies.
• Section 7 of the bill would authorize the Secretary, in consultation with the NIH Director, 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 this legislation

Status and Outlook

H.R. 583 was introduced by Representative Pickering on February 2, 2005, and was referred to the House Committee on Energy and Commerce. No further action has occurred on this legislation.

S. 424 was introduced by Senator Bond on February 17, 2005, and was referred to the Senate Committee on Health, Education, Labor and Pensions. No further action has occurred on this legislation.