Navigating life with PH is challenging at the best of times, and COVID-19 has added new stress and uncertainty. PHA is here for you through phone support, virtual meetings, educational resources and advocacy. The Pulmonary Hypertension Association (PHA) is proud to be the leading voice to Congress and federal agencies about the needs of people with PH and the health care professionals who treat them. PHA works for you on Capitol Hill during the COVID-19 crisis and beyond.

PHA also partners with other rare and chronic disease organizations to pave the way for easier access to quality care.

Oxygen access

PHA advocacy goal: PH patients have insurance coverage for the exact type of oxygen equipment they need, including liquid and portable options.

Recent progress: To increase patient safety, the Center for Medicare and Medicaid Services (CMS) waived in-person testing and signature-for-delivery requirements related to home oxygen during the COVID-19 crisis.

Early and extended refill and off-formulary coverage

PHA advocacy goal: PH patients can maintain uninterrupted access to therapy in case of a shipment delay or manufacturing disruption.

Recent progress: The Coronavirus Aid, Relief, and Economic Security (CARES) Act requires Medicare Part D and Medicare Advantage prescription drug plans to permit beneficiaries to obtain up to 90-day supplies of covered Part D drugs during the pandemic.


PHA advocacy goal: Increased access to medically appropriate telehealth services to ease the risks and burdens of travel for PH patients.

Recent progress: During the COVID-19 crisis, the CARES Act eliminates frequency restrictions on some types of telemedicine and increases reimbursement rates for telehealth appointments to match the rates typically provided for in-person visits.

Charitable assistance

PHA advocacy goal: Health insurance plans accept charitable assistance payments and fully apply them to deductibles and out-of-pocket maximums.

Recent progress: PHA led a letter signed by dozens of other organizations calling on Congress to eliminate barriers to charitable assistance during the COVID-19 crisis and beyond.

Prior authorization and step therapy (benefits management)

PHA advocacy goal: Medical care is driven by clinician judgement and the patient-clinician relationship. People with PH have prompt, affordable access to the specific therapy prescribed by their expert physician.

Recent progress: The Health and Human Services Department (HHS) recommends health insurance plans allow medical professionals to focus on people, not paperwork. HHS encourages health plans to reduce or be more flexible with prior authorization and step-therapy requirements. The Safe Step Act, which would limit step-therapy requirements for people with PH and other life-threatening conditions, has 137 co-sponsors in the House of Representatives.

Special enrollment periods

PHA advocacy goal: People who aren’t insured should be able to secure coverage immediately without penalty during the pandemic.

Recent progress: To date, 13 states that manage their own health insurance marketplaces have special enrollment periods. PHA continues to press the federal government to open special enrollment periods in states that use the federal marketplace and people with other types of health insurance.

COVID-19 medical care coverage

PHA advocacy goal: Coverage of COVID-19 testing and treatment without cost sharing.

Recent Progress: The Cares Act requires full coverage of COVID-19 preventative measures as long as they are completed within 15 days of when they were recommended. It also requires full coverage of a COVID-19 vaccine when one becomes available.

Congress can still hear us! We might not be able to storm the Capitol in person, but the voices of the PH community have never been more important. Take action at PHA’s Advocacy Action Center share your treatment access story directly with PHA.

For more information about COVID-19 and PH, visit PHA’s COVID-19 FAQ.