What We Fight For 

Join the fight! Learn more about the Pulmonary Hypertension Association’s (PHA’s) legislative priorities. Then use the tools at www.PHAssociation.org/Advocate to take action.

To best serve our diverse constituents, PHA strives to engage with policy makers from the full political spectrum. Advocates are encouraged to personalize their messages but should refrain from presenting their political beliefs as statements on behalf of PHA.


PHA supports legislation that:

  • Prohibits pre-existing condition discrimination and other forms of discrimination against individuals with costly health conditions.
  • 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 at least 26.
  • Ensures formulary and network adequacy.
  • Ensures medical care driven by clinician judgment and the patient-clinician relationship.


PHA understands that copay cards and copay and premium assistance grants are a critical part of making ends meet for many in the PH community. Through the United for Charitable Assistance Coalition, PHA leads a national effort to ensure health insurance payers accept payments made on behalf of individuals with complex, costly conditions including PH. In addition, PHA advocates that those payments must be applied to patients’ deductibles and annual maximum.


Even a brief disruption in PH treatment can be life-threatening. Insurance payers create serious problems when they use “step therapy” or “fail-first” requirements to shift individuals with PH from one therapy to another based on insurance company cost savings rather than physician recommendations. PHA advocates for legislation that exempts individuals with life-threatening illnesses from step therapy requirements in certain situations and would require payers to offer a clear exceptions process and a rapid response to exception requests.


Health insurance plans often place high-cost medications like those for PH in a specialty tier, causing a significant portion of the medication cost to shift back to the individual. For example, some plans require individuals with PH to pay 40% – 60% of the cost of their therapies out-of-pocket. PHA advocates for limits on out-of-pocket costs for patients.


PHA advocates for policies requiring oxygen suppliers to promptly provide oxygen equipment as specified by a physician, including delivery of adequate liquid oxygen supplies. In addition, PHA advocates for oxygen suppliers to be held accountable for the quality of their customer service.


Researchers across the country depend on grants from the National Institutes of Health (NIH) to pay for the work of understanding, treating and ultimately curing PH. PHA advocates for robust, consistent NIH funding so that PH care can continue to advance.