Talking Points

Pulmonary Hypertension Research and Diagnosis Act (H.R. 2073; S. 1453)

Introduced by Representatives Kevin Brady (R-TX) and Lois Capps (D-CA), the Pulmonary Hypertension Research and Diagnosis Act seeks to:

Give individuals with pulmonary hypertension (PH) longer, better lives

This bill would bring leaders from the National Institutes of Health, Food and Drug Administration, Centers for Disease Control and the Health Resources and Services Administration together with PH patients and caregivers. As a group, they would create a strategic plan to:

  • Increase PH research
  • Increase early and accurate diagnosis
  • Educate medical professionals and the public about PH

Save the government money by improving early diagnosis

This bill focuses on improved health outcomes through early, accurate diagnosis and decreases federal healthcare expenditure related to PH by focusing on improved health outcomes through early and accurate diagnosis.

There are currently twelve therapies for pulmonary hypertension. Their effectiveness depends  on prompt, accurate diagnosis of the disease. Unfortunately, 75% of patients have advanced PH by the time they are diagnosed, and many must consider more expensive treatments or a heart-lung transplant.

Take a budget-neutral approach that is unique among disease-specific bills

This bill does not ask Congress to spend any extra money. It gathers together existing stakeholders and asks them to make recommendations on how to more effectively and efficiently improve health outcomes for PH patients.

 

Pulmonary Hypertension

What is pulmonary hypertension? Is it different from common hypertension?

Pulmonary hypertension (PH) is a complex and often misunderstood disease. PH means high blood pressure in the lungs. In regular high blood pressure, the arteries throughout a person’s body are constricted. In pulmonary hypertension, the blood vessels in the lungs become narrowed and the heart has to work harder to pump blood through them making it difficult to get enough oxygen-rich blood to the body. PH is a life-threatening condition.

One type of PH is high blood pressure in the pulmonary arteries, which is called pulmonary arterial hypertension (PAH).

What are the symptoms of PH?

Symptoms of PH, which include breathlessness, dizziness and fatigue, are often mistaken for those of other, less serious conditions.

What is the outlook for someone with PAH? Are their treatments?

While PAH has no cure, we are fortunate that there are twelve treatments which help patients feel better and live longer

Until 1995 there were no treatments specifically for PAH. Without treatment, the average time that PHers lived after diagnosis was less than three years.

What are some of the challenges of living with pulmonary hypertension?

  • Cost: A single PAH treatment can cost from $20,000 a year to more than $100,000 a year. Some patients use more than one treatment.

  • Treatment complexity: While some PAH treatments are pills, others require regular self-injection or even infusion through a pump that’s attached outside the body 24/7. Some PAH drugs must be prepared in a sterile environment. Each patient responds to treatment differently and many experience significant side effects from their treatment.

Who gets PAH and how many people have it?

In the U.S. an estimated 20,000-30,000 individuals are being treated for PAH. In some cases of PAH, no cause can be identified. Other people develop PAH because of a genetic link in their families. Women develop PAH more frequently than men, but the disease can impact anyone of any age including infants and children. It occurs across the U.S. and throughout the world.

PAH is more likely to occur in individuals with certain associated medical conditions such as scleroderma, lupus and sickle cell disease. Since the symptoms of PAH are similar to those of other, less serious conditions, misdiagnosis is common. Many people with symptoms of PAH often spend two to three years or more seeking an accurate diagnosis. 

Watch: PHA Advocacy Training

Watch this video to learn more about the PH bill and how to reach out to your Members of Congress about becoming a co-sponsor.

The information provided on the PHA website is provided for general information only. It is not intended as legal, medical or other professional advice, and should not be relied upon as a substitute for consultations with qualified professionals who are familiar with your individual needs.

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NORD

The National Organization for Rare Disorders (NORD) awarded PHA the Abbey S. Meyers Leadership Award in 2012 for outstanding service to PHA members in advocacy, education and other key areas.