109th Congress

Pulmonary Hypertension Research Act of 2005

H.R. 3005

Background

Pulmonary hypertension is a serious and often fatal disorder in which the blood pressure in the lungs rises to dangerously high levels. In patients who have pulmonary hypertension, the walls of the arteries that take blood from the right side of the heart to the lungs thicken and constrict. As a result, the right side of the heart must pump harder to move blood into the lungs, causing it to enlarge and ultimately fail. It is estimated that more than 100,000 Americans suffer from this condition, which predominately strikes young women.

Pulmonary hypertension can occur without a known cause or can be secondary to another condition, such as scleroderma, lupus, HIV infection, sickle cell disorders, and liver disease. Symptoms include shortness of breath, fatigue, chest pain, dizziness, and fainting. Unfortunately, these symptoms are frequently misdiagnosed, leaving patients with the false impression that they have a minor pulmonary or cardiovascular condition. By the time many patients receive an accurate diagnosis, the disease has progressed to a late stage, making it impossible for the patient to receive a heart or lung transplant.

H.R. 3005, the Pulmonary Hypertension Research Act of 2005, was cosponsored by Representative Tom Lantos (D-CA). His granddaughter, Charity Sunshine Tillemann-Dick, was diagnosed with pulmonary hypertension in 2004. In June 2005, Ms. Tillemann-Dick, a 21-year-old graduate student at the Peabody Conservatory in Baltimore, MD, made her Kennedy Center debut at a concert organized to raise awareness about the disorder. She was accompanied by Secretary of State Condoleezza Rice, an accomplished pianist who rarely plays in public. "We believe this evening will go a long way toward increasing awareness about [pulmonary hypertension] and ultimately toward finding a cure," wrote Representative Lantos in the concert program.

The National Heart, Lung, and Blood Institute (NHLBI) and other Federal agencies, as well as foundations and the private sector, are already addressing the issues outlined in the proposed legislation. NHLBI supports all pulmonary hypertension research at the National Institutes of Health (NIH), including basic and clinical research and individual and institutional training programs. The amount of NHLBI funding for pulmonary hypertension has increased over the years, with $27.6 million spent in fiscal year (FY) 2004. According to the preamble in H.R. 3005, "in 1981, the National Heart, Lung, and Blood Institute established the first [primary pulmonary hypertension] PPH-patient registry in the world. The registry followed 194 people with PPH over a period of at least 1 year and, in some cases, for as long as 7.5 years. Much of what we know about the illness today stems from this study."

Provisions of the Legislation/Impact on NIH

On June 21, 2005, Representative Kevin Brady (R-TX), along with Representatives Lantos, Roy Blunt (R-MO), and Steny Hoyer (D-MD), introduced H.R. 3005, the Pulmonary Hypertension Research Act of 2005. The bill would amend the Public Health Service Act to require the Director of NHLBI to expand, intensify, and coordinate activities with respect to research on pulmonary hypertension and coordinate activities with related activities of other national research institutes and NIH agencies. NHLBI would be required to develop and operate not less than three centers to conduct research and programs on pulmonary hypertension. These centers would be funded for a period not to exceed 5 years, or funding could be extended for additional periods of not more than 5 years if the operations of the centers are reviewed by an appropriate technical and scientific peer-review group established by the Director and recommended for extension. The centers would conduct the following types of research and programs: 1) basic and clinical research into the cause, diagnosis, early detection, prevention, control, and treatment of the disease, 2) training programs for scientists and health professionals, 3) programs to provide information and continuing education to health professionals, and 4) programs for the dissemination of information to the public.

The bill would also require NHLBI to establish 1) a data system for the collection, storage, analysis, retrieval, and dissemination of data derived from pulmonary hypertension patient populations and 2) an information clearinghouse to facilitate and enhance the knowledge and understanding of pulmonary hypertension by health professionals, patients, industry, and the public. The bill would authorize $50 million for each of the FYs 2006 through 2010.

Status and Outlook

H.R. 3005 was introduced by Representative Brady on June 21, 2005, and was referred to the House Committee on Energy and Commerce. The bill currently has 221 cosponsors. No further action has occurred on this legislation.