PHA advocates recently scored more wins for the Supplemental Oxygen Access Reform Act and the Safe Step Act, two PHA legislative priorities.

Three days after the Pulmonary Hypertension Association’s March 9 Hill Day, Rep. Shomari Figures (D-Ala.) cosponsored the bill. PHA advocates, including Wendahl Lewis from Tuskegee, Alabama, met with Tristan Breaux, Figures’ chief of staff.

Figures and two other lawmakers also signed on to the Safe Step after PHA advocates visited their offices: Reps. John Rutherford (R-Fla.) and Joe Wilson (D-S.C.).

“While visiting Capitol Hill and the office of Rep. Shomari Figures, I have come to the conclusion: In the Halls of Power, a personal story is the most persuasive policy,” Lewis said. “When you go the extra mile, it counts.”

Pulmonologist Jim White, medical director of the PH program at the University of Rochester Medical Center, also visited Figures’ office.

“Unfortunately, many of our patients have no choice but to use systems with inadequate flow rates, portable devices that border on useless for their needs, and insurance coverage that is laughable given the life-saving nature of the therapy,” White said. “Innovative solutions [for oxygen therapy] would almost certainly follow if reimbursement increased substantially.”

Lewis and White were among 43 advocates who participated in Hill Day, including people with PH, family members and PHA volunteers. Volunteers included members of PHA’s board of trustees, Scientific Leadership Committee and PH Professional Network Executive Committee.

“This multitude of perspectives from patients, caregivers and providers helped advocates build a compelling case for the SOAR Act in the 30 offices they visited,” says Jaeger Spratt, advocacy and treatment access program manager, PHA.

The participation of many oxygen users demonstrated the challenges they face. Lindsay Cipriani of Cincinnati struggled to find a company that would supply oxygen tanks for children. Without assistance from Johns Hopkins Children’s Center, 10-year-old Lily couldn’t have joined her mom on Capitol Hill.

Calls for reform

In addition to promoting oxygen access reform, advocates urged elected officials to support the Safe Step Act. The bill proposes reasonable exceptions to insurance company step therapy requirements that could impair patient health. Step therapy policies force patients to try less-costly treatments before insurance companies will cover a more expensive prescribed therapy.

Several Hill Day participants shared their challenges with increasing insurance premiums and urged legislators to make health insurance more affordable and accessible. The advocates also sought support for continued robust funding for research at the National Institutes of Health.

Elizabeth Cooke traveled from California for her first PHA Hill Day to increase visibility for Black people with PH.

“Representation in advocacy matters just as much as representation in research,” says Cooke of Oakland. “The data on racial disparities in pulmonary hypertension is both striking and deeply personal to me. Research shows Black women have the highest prevalence of PH among all racial and ethnic groups in the United States.

“Federal investment in PH research must reflect the populations most affected by this disease. Access to affordable, high-quality care is a necessity, not a privilege, but it remains out of reach for far too many Black women with PH. When policymakers understand who is most impacted and why, they are better equipped to make decisions that lead to real, equitable change.”

Browse photos from Hill Day 2026

Close