Legislative advocacy can make a difference for PH care

I recently went to Washington, D.C., as part of the Pulmonary Hypertension Association’s (PHA) Capitol Hill Day to advocate for the pulmonary hypertension (PH) community and help secure co-sponsorship of the Supplemental Oxygen Access Reform Act (SOAR) and the Safe Step Act.

The SOAR Act seeks to reform Medicare reimbursement for supplemental oxygen and to address access to liquid oxygen and other portable modalities. Medicare reimbursement policies have contributed to a decline in the availability of liquid oxygen for patients, particularly due to competitive bidding.

Liquid oxygen systems can provide continuous oxygen flow up to about 10 liters a minute, allowing treatment for patients with higher requirements. Currently, users on a high-flow rate must carry large, heavy tanks when they leave the house and have only a limited time before they must reconnect to their home concentrators. Portable compressed oxygen cylinders typically range from 3 to 10 pounds, depending on size, while portable liquid oxygen systems are lighter. Having access to liquid oxygen is the only feasible way for those on high-flow rates to leave their homes safely.

The legislation also provides assurances that respiratory therapists will be reimbursed for home visits to help ensure that patients receive the oxygen supplies they need and know how to use them properly.

The Safe Step Act protects patients who need critical medicines. It requires insurers to cover prescribed medications rather than forcing patients to try cheaper alternatives first. This “fail-first” approach can be dangerous when timely therapeutic treatment may reduce morbidity or mortality.

Recommended Reading

March 9, 2026 News by Marisa Wexler, MS

Issues with tiny heart blood vessels may contribute to damage in PAH

‘Our stories must be heard’

Thanks to the dedication and hard work of the PHA, along with patients, their families, and medical professionals, I feel the tide turning, and I’m grateful to have been included in Capitol Hill Day. Every year, the PHA hosts the event to help advocates reach out to those who can improve policy for the PH community.

Jolie Lizana recently visited the U.S. Capitol in Washington, D.C., to argue for two bills that would shape pulmonary hypertension care.

I hope more people start to understand that advocacy begins with patients, and that we must share our stories to empower each other, gain accessibility for our communities, and improve policy for future generations.

Someone once said, “We are sick. Why must we advocate for change?” I say, “We don’t want those without our conditions deciding our care. They don’t understand our struggles.”

This is why our stories must be heard. Without patients speaking to policymakers, change will not happen, because people do not understand our experience unless they are part of the rare disease community or hear from us.

Legislative meetings take place in our home states and at the U.S. Capitol. One great thing about the digital age is that we can also attend virtual meetings and advocate for better medical care from the comfort of our homes.

We look forward to welcoming new legislative advocates and doubling the attendance at next year’s Capitol Hill Day. No experience is necessary. Training is provided beforehand, and if you can’t travel, you can still make an impact.

For details on PHA’s Capitol Hill Day and the key topics such as the SOAR Act and the Safe Step Act, visit the PHA Advocacy Action Center. You can send letters to legislators by selecting your issue, entering your name and address, and editing the prefilled letter.

Get involved because every effort matters. Take action with us and help create lasting change for those impacted by pulmonary hypertension. For more advocacy, follow me at BreathtakingAwareness.

Note: Pulmonary Hypertension News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Hypertension News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to pulmonary hypertension.