Washington, D.C., May 5, 2017—  The Pulmonary Hypertension Association (PHA) — the world’s first and largest organization dedicated to empowering and advocating for pulmonary hypertension (PH) patients and caregivers, promoting quality care and catalyzing research for a cure — issued a response to the House of Representatives’ passage of the American Health Care Act.

PHA is troubled that the House has passed a bill that does not guarantee coverage for people with pre-existing conditions and creates additional barriers to care for patients with PH and other chronic illnesses. Pulmonary hypertension is high blood pressure in the lungs. When a person has PH, the arteries in the lungs become damaged, narrow or stiff, putting pressure on the right side of the heart as it works extra hard to push blood through. If left untreated, PH can lead to right heart failure and death. But with quality care, early and accurate diagnosis and appropriate treatments, patients are living longer and better lives.

“Coverage under a law that results from this bill would be highly discriminatory against patients with PH, whose lives depend on expensive treatments and care that they simply cannot afford without insurance,” said PHA President and CEO Brad A. Wong. “We join other patient organizations — many which represent patients who have conditions associated with PH — in expressing our willingness to work with Congress and the administration on important details as this debate continues in the Senate.”

The legislation passed by the House gives states the opportunity to request waivers from protections afforded under the Affordable Care Act (ACA), including pre-existing conditions,  annual and lifetime caps prohibitions and charging higher premiums based on health status. The bill also weakens basic patient protections that exist under the ACA and reduces existing Federal and state cost sharing subsidies that make coverage affordable for low-income individuals.

PHA is mobilizing its community of nearly 15,000 patients and caregivers and their clinicians to fight this bill as it makes its way to the U.S. Senate. As the Senate undertakes the matter and crafts its version of a health coverage bill, PHA will continue to advocate for healthcare policy that:

  • Prohibits discrimination against individuals with costly health conditions, including pre-existing condition discrimination
  • Limits out-of-pocket costs for patients
  • Prohibits lifetime and annual caps on insurance benefits
  • Allows young adults to stay on family coverage until they are 26
  • Ensures formulary and network adequacy
  • Ensures medical care driven by clinician judgement and the patient-clinician relationship

To learn more and to join the PH community in taking action on PHA’s healthcare reform priorities, visit www.PHAssociation.org.