107th Congress

Pulmonary Hypertension Research Act of 2001

H.R. 1297

Background

Pulmonary hypertension is characterized by sustained, abnormally high blood pressure in the arteries of the lungs. There are two kinds of pulmonary hypertension: primary and secondary. Primary, or unexplained, pulmonary hypertension (PPH) is a rare lung disorder that occurs for no apparent reason. There is no cure for PPH, and it has a low survival rate. Secondary pulmonary hypertension (SPH) means the cause of SPH is known. Common causes of SPH are emphysema, cystic fibrosis, and congenital heart disease.

Estimates of the incidence of PPH range from one to two people per million in the general public. In the United States, it has been estimated that 300 new cases of PPH are diagnosed each year; the greatest number are reported in women between the ages of 21 and 40. Based on data from the National Heart, Lung, and Blood Institute (NHLBI)-supported National Patient Registry for PPH, which recruited patients between 1981 and 1985, it was estimated that approximately 6 percent of the cases of PPH are due to an inherited defect. This may be an underestimate; however, since it appears that not everybody who inherits the defective gene develops the disease, the familial component is not always discernable. Interest in pulmonary hypertension has escalated due to a rise in the number of cases associated with the appetite-suppressant drugs fenfluramine-phentermine (fen-phen) and dexfenfluramine (Redux).

The treatment for PPH remains limited. The most successful treatment currently in use is continuous intravenous prostacyclin, a potent vasodilator. Despite its favorable outcome in some patients, it is very costly, complicated to administer, and associated with a number of systemic side effects. Lung transplantation is an option for some patients when all other forms of treatment have been unsuccessful. There are now several new drugs being evaluated in clinical trials that hold promise for a more effective treatment for this devastating disease.

H.R. 1297, the Pulmonary Hypertension Research Act of 2001, would have amended the Public Health Service Act to provide for pulmonary hypertension research at NHLBI. As cited in the "Findings," the bill seeks to further the Federal investment in pulmonary hypertension to take advantage of the potential for finding a cure or an effective treatment.

Provisions of the Legislation/Impact on NIH

H.R. 1297 would have required the Director of NHLBI to expand, intensify, and coordinate the Institute's activities with respect to pulmonary hypertension, including coordination with similar activities of other Institutes and Centers of the National Institutes of Health. In addition, the Director of NHLBI would have been required to make grants to, or enter into contracts with, public or nonprofit private organizations for the development and operation of three Centers of Excellence to conduct relevant basic and clinical research, provide research training for scientists and health professionals, provide information and continuing education for health professionals, and disseminate information to the public. The Director of NHLBI also would have been required to coordinate information exchange between Centers, including the periodic preparation of reports. Support for each Center would not have exceeded a period of 5 years, although an extension for up to an additional 5 years could have been made upon appropriate technical and scientific peer review. The bill authorized up to $25 million for fiscal years 2002 through 2006.

Status and Outlook

H.R. 1297 was introduced on March 29, 2001, by Representative Kevin P. Brady (R-TX) and was referred to the House Energy and Commerce Committee. There was no further action on this legislation during the 107th Congress.