Advocates for pulmonary hypertension (PH) awareness and the people afflicted by the rare disease brought their case to the nation's capital last month. Members of the advocacy group, Pulmonary Hypertension Association, hosted a luncheon on Capitol Hill with members of Congress and patients.
In the Legislative Spotlight
The campaign came on the heels of legislation recently introduced in both chambers aimed at funding and expanding PH-focused research. The so-called "Pulmonary Hypertension Research Act" (H.R.1316, S.2922) would authorize the following:
- An expansion of pulmonary hypertension research at the National Heart, Lung and Blood Institute (NHLBI).
- The establishment of three "Centers of Excellence" with public, non-profit or private entities to support basic and clinical research into the cause, diagnosis, early detection, prevention, control and treatment of PH, as well as PH training programs for scientists and health professionals, and awareness efforts.
- The establishment of a pulmonary hypertension data system and clearinghouse at NHLBI.
The bill's House sponsor is Rep. Kevin Brady (R-TX) and in the Senate, the proposal is sponsored by Sen. John Cornyn (R-TX).
Members of the PH Association used the luncheon as a setting to drum up Congressional support for the proposed legislation. Among the speakers at the event was Rep. Tom Lantos (D-CA), who pledged to work with the PH Association and Rep. Brady's office to bring the bill to the forefront in the House chambers.
The House Subcommittee on Health, and the Senate Committee on Health, Education, Labor and Pensions are holding separate hearings on the bill.
Making the Congressional Rounds
As a result of the luncheon, the PH Association says it has secured more appointments with other members of Congress as part of its ongoing awareness efforts. "The luncheon was an important part of a large effort to bring further awareness to PH and eventually find a cure," the association stated in a press release.
A Rare Lung Disorder
Pulmonary hypertension is a rare lung disorder that results in the narrowing of arteries in the lungs, making it difficult for blood to flow through the vessels. As a result, the blood pressure in the pulmonary artery rises far above normal levels. This artery is responsible for carrying oxygen-poor blood from the heart's right ventricle to the lungs.
The abnormally high pressure, in turn, strains the heart's right ventricle, causing it to abnormally expand. As such, the right ventricle becomes weaker and loses its ability to pump enough blood to the lungs.
Symptoms of PH include shortness of breath with physical exertion, dizziness, fainting spells, swelling, bluish lips and skin, and chest pain. The causes of the disease can vary widely, and include chronic liver disease, liver cirrhosis, scleroderma, systemic lupus erythematosus, chronic obstructive pulmonary disease (COPD) or pulmonary fibrosis.1
It's estimated that PH occurs in about 2 of every 1 million people each year.2
1. The Cleveland Clinic Foundation. What You Need to Know About Living With Pulmonary Hypertension.
2. Pulmonary Hypertension Association. What is PH?
John Martin is a long-time health journalist and an editor for Priority Healthcare. His credits include coverage of health news for the website of Fox Television's The Health Network, and articles for the New York Post and other consumer and trade publications.
