Members of the Pulmonary Hypertension Association (PHA) accompanied PH patients from across the country yesterday to meet with Members of Congress. November is Pulmonary Hypertension Awareness Month, and to boost support for national efforts against this life threatening cardiopulmonary disease, they discussed the everyday plight of PH patients in the country, and encouraged cosponsorship of the Pulmonary Hypertension Research and Diagnosis Act (H.R. 2073, S. 1453).
Katie Kroner, Director of Advocacy and Awareness, PHA, commented on the difficulty of traveling for PH patients. “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.”
This vital meeting with the Members of Congress is one of the many PH support initiatives and programs the association has launched in commemoration of National PH Awareness Month. The keynote speaker during the Congressional Luncheon was Jessica Armstrong, who is also a PH patient. She shared her inspiring story of battling and surviving the disease, including the constant challenge of acquiring treatment. The luncheon was attended by several other notable speakers such as 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.
The meeting was an opportunity for the PH community to be heard on Capitol Hill, and will hopefully pave the way for pivotal changes nationwide, especially through the proposed Pulmonary Hypertension Research and Diagnosis Act. This budget-neutral bill aims to encourage dialogue among healthcare agencies to improve PH patient outcomes. This legislation will:
- Allow government agencies to deliberate and decide on the best ways to utilize available resources to help solve concerns with PH.
- Promote initiatives to systematically reduce healthcare costs acquired from managing PH and lower federal spending.
- Reduce redundancy and duplication of these initiatives by fostering communication and efficiency across federal programs geared towards addressing 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.”