Pulmonary Hypertension Research and Diagnosis Act Focus of PHA Advocacy Day and Congressional Luncheon

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Pulmonary hypertension (PH) patients from around the country, accompanied by staff from the Pulmonary Hypertension Association (PHA), are meeting with Members of Congress today to shed light on the everyday struggles of the PH patient and encourage their co-sponsorship of the Pulmonary Hypertension Research and Diagnosis Act (H.R. 2073, S. 1453).

Pulmonary Hypertension Association

“Our members understand the importance of meeting face to face with their Members of Congress and helping them understand that passage of this legislation equals improved quality of life for PH patients and their loved ones."

Pulmonary hypertension (PH) patients from around the country, accompanied by staff from the Pulmonary Hypertension Association(PHA), are meeting with Members of Congress today to shed light on the everyday struggles of the PH patient and encourage their co-sponsorship of the Pulmonary Hypertension Research and Diagnosis Act (H.R. 2073, S. 1453). Pulmonary hypertension is a rare and debilitating disease of the lungs that affects the functioning of the heart and can lead to right heart failure. Without treatment, average survivability is only 2.8 years.

PHA’s National PH Advocacy Day and Congressional Luncheon occurs every November during Pulmonary Hypertension Awareness Month. It gives the PH community the chance to let their voices be heard on Capitol Hill and fight back against this devastating disease. The Congressional Luncheon keynote speaker will be PHA staff member and PH patient, Jessica Armstrong. Ms. Armstrong will share her story of survival and the many obstacles to treatment and recovery she has faced since the diagnosis of her PH, which first presented while she was serving in Afghanistan. Other noted speakers include, pediatric cardiologist John T. Berger, MD, from Children’s National Health System, and Gary H. Gibbons, MD, Director of the National Heart, Lung, and Blood Institute at the National Institutes of Health.

“It can be very challenging for individuals with PH to travel long distances while dealing with this disease,” said Katie Kroner, PHA’s Director of Advocacy and Awareness. “Some have trouble even ascending a flight of stairs without becoming short of breath. Despite the difficulties, our members understand the importance of meeting face to face with their Members of Congress and helping them understand that passage of this legislation equals improved quality of life for PH patients and their loved ones.”

The Pulmonary Hypertension Research and Diagnosis Act (H.R. 2073, S. 1453) is a budget neutral bill that seeks to improve health outcomes for PH patients by establishing dialogue among the various healthcare agencies currently working to address the disease. The legislation:

  • Allows federal agencies to decide through thoughtful deliberation how to most effectively leverage available resources to address this critical healthcare issue.
  • Promotes efforts to systematically lower PH-related healthcare expenditures and reduce federal spending.
  • Reduces redundancy and duplication of efforts by encouraging communication and efficiency across federal programs working to combat PH.

“Our mantra at PHA is that any person whose life is touched by PH has the right to fight back as much or as little as health and interest will allow,” said Rino Aldrighetti, President and CEO of PHA. “We will continue our work and light the way to a better tomorrow for every person affected by this disease.”

About the Pulmonary Hypertension Association
Headquartered in Silver Spring, Md., the Pulmonary Hypertension Association (PHA) is the country's leading pulmonary hypertension organization. Its mission is to find ways to prevent and cure pulmonary hypertension and provide hope for the community through support, education, research, advocacy and awareness. PHA does this by connecting and working together with the entire PH community of patients, families and medical professionals. Among its programs, PHA facilitates more than 245 support groups around the country and delivers continuing education for medical professionals through PH Online University.

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Renee Hockaday
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