What we fight for

PHA supports health care policies that:

Prohibit discrimination against people with complex health conditions that require expensive treatment.

Ensure clinical judgment and patient-clinician relationships guide medical care.

Make health care insurance accessible, affordable and appropriate.

Improve access to care for people with complex, expensive health conditions through policies that decrease out-of-pocket costs and remove other barriers to health care.

At issue

Better treatment access

Early diagnosis and appropriate treatment can affect life expectancy and quality of life for people with pulmonary hypertension. PHA advocates for policies that:

  • Ensure oxygen supply companies provide all forms of supplemental oxygen, including liquid oxygen and portable oxygen concentrators.
  • Eliminate insurance coverage loopholes, such as copay accumulators, copay maximizers and drug formulary limits.
  • Prohibit insurance companies from shifting costs to vulnerable people with complex conditions and restricting access to their treatment.
  • Limit prior authorization, re-authorization and step therapy requirements for life-saving treatment prescribed by PH specialists. People with PH need to receive the treatment their physicians believe is right for them, as quickly as possible.
  • Expand access to affordable, appropriate health care, including programs like Medicaid, the Children’s Health Insurance Program and the Affordable Care Act’s subsidies for insurance premiums.

Sufficient research funding

PHA supports annual funding increases for the National Institutes of Health and the Centers for Disease Control and Prevention. These agencies allocate grants to researchers who study PH.

Many FDA-approved PH treatments have started with NIH-funded research. Despite the availability of these treatments, many people aren’t diagnosed soon enough for these the medications to halt or improve their PH symptoms. The CDC’s Chronic Disease Education and Awareness Initiative aims to reduce diagnosis delays by educating health care professionals and raising public awareness.

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