111^th Congress

Arthritis Prevention, Control, and Cure Act of 2009

H.R. 1210, S. 984

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 Barbara Boxer (D-CA) reintroduced legislation previously sponsored by Senator Edward M. Kennedy (D-MA) in the 110th Congress and 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 Centers for Disease Control and Prevention (CDC), an estimated 46 million adults have arthritis and an estimated 294,000 children have been diagnosed with arthritis or another rheumatologic condition. When introducing the bill, Senator Boxer stated that she supported provisions for increasing efforts to address juvenile arthritis. While previous legislation did not designate the amount of money to be spent on these directives, S. 984 authorizes specific appropriations.

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, H.R. 1210 would authorize the Director of NIH to expand and intensify research on juvenile arthritis and related conditions. Additional provisions of H.R. 1210 would:

• Authorize the Secretary of Health and Human Services (HHS) to develop and implement a National Arthritis Action Program (NAAP)
• 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

As introduced, Section 3 of S. 984 would amend Title IV of the Public Health Service Act to require the Secretary of 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. To carry out this section, $1 million would be authorized to be appropriated for each of the fiscal years (FYs) 2010 through 2014.

Section 4 of S. 984 would amend the Public Health Service Act to require the Director of NIH, in coordination with the Directors of NIAMS and other appropriate NIH 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. To carry out this section, the following would be authorized to be appropriated: $12 million for FY 2010, $14 million for FY 2011, $16 million for FY 2012, $18 million for FY 2013, and $20 million for FY 2014.

Section 6 of S. 984 would authorize the Secretary of HHS, in consultation with the Director of NIH, to establish career development awards in pediatric rheumatology. To carry out this section, the following would be authorized to be appropriated: $900,000 for FY 2010, $1.4 million for FY 2011, $1.9 million for FY 2012, $2.4 million for FY 2013, and $2.9 million for FY 2014.

Additional provisions of S. 984 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 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 to 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

Status and Outlook

H.R. 1210 was introduced by Representative Anna Eshoo (D-CA) on February 26, 2009, and was referred to the House Committee on Energy and Commerce. No further action has occurred on this legislation.

S. 984 was introduced by Senator Boxer on May 16, 2009, and was referred to the Senate Committee on Health, Education, Labor and Pensions. No further action has occurred on this legislation.

May 2009