Since the beginning of the year, Congress has been considering proposals to repeal the Affordable Care Act. While it is clear that the current health care law could be improved, the proposals to repeal it did not take the right steps to protect people with serious health concerns like pulmonary hypertension (PH). Members of the PH community sent more than 1,700 emails to Congress to remind them that strong health policy needs to meet the needs of individuals with complex health conditions. Members of hundreds of other medical and patient-support organizations did the same.

In March, a repeal bill called the Better Care Reconciliation Act passed the House of Representatives, and in July the Senate voted to consider the same bill. Ultimately, however, advocates’ voices won out. Enough senators voted no on the Better Care Reconciliation Act that the bill will not be able to advance at this time. Members of Congress must shift their attention to efforts to improve the existing health care law. As legislative actions and debate continues to evolve, PHA will continue to advocate for the right healthcare policy for the PH community. We are fighting for health care policy that:

  • Prohibits discrimination against people 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
The PH community stands with millions of others who depend on quality, affordable health care that supports the needs of people with chronic, costly diseases. For many, these protections are a lifeline. PHA will continue to provide updates on health care reform efforts and other action opportunities. To receive PHA’s advocacy email updates sign up here.