After PHA advocates visited members of Congress for World PH Day, one legislator stepped up right away.
Rep. Cleo Fields (D-La.) cosponsored the Supplemental Oxygen Access Reform Act, the day after PHA advocates visited him on Capitol Hill. The SOAR Act would make supplemental oxygen more accessible for Medicare beneficiaries.
“There are very few legislative meetings where we get a definitive ‘yes’ to cosponsor a bill directly from the congress member,” said Jaeger Spratt, advocacy and treatment access program manager, PHA. “It’s even more rare to see that follow-through happen the next day.
“Our advocates should feel very proud of themselves for the work we accomplished together. It is encouraging to have a member of Congress so responsive to the urgent needs of the PH and pulmonary disease communities,” Spratt said. “PHA thanks Congressman Fields for his vital support.”
Sheila Chandler, a PHA advocate from Deville, Louisiana, said she felt inspired by her fellow advocates after their visit with Fields. Chandler plans to get more involved in Pulmonary Hypertension Association advocacy and learn more about the PHA policy priorities.
Chandler was among more than 30 advocates who participated in the two-day advocacy event. During in-person visits May 6 and Zoom calls May 7, advocates asked lawmakers to support the SOAR Act and preserve funding for Medicaid and National Institutes of Health research. The advocates, who came from as far as Hawaii and Maine, included people with PH, health care professionals, family members and caregivers.
On Capitol Hill, Cheryl Dehoney from Kapolei, Hawaii, was among the advocates who visited the office of Rep. Jill Tokuda (D-Hawaii). Tokuda was one of the earliest cosponsors of the SOAR Act, which was reintroduced in April in Congress.
“The three asks are huge initiatives to carry forward, and we had some wins,” says Dehoney, who has pulmonary arterial hypertension. “By adding one voice and one step at a time, together we win.”
Because of lawmakers’ busy schedules, advocates from many organizations often meet only with legislative staffers. But several other PHA groups connected in person with their representatives.
Kristin Seitz and her son and caretaker Jake Seitz felt “fired up” after meeting Rep. Scott Fitzgerald (R-Wis.) “By showing up and being here, hopefully we made a difference,” Kristin Seitz says. “It was tough to get here, but I’m so glad I did.”
Similarly, Wendahl Lewis from Tuskegee, Alabama, and his group of advocates met Rep. Shomari Figures (D-Ala.). Lewis, who is concerned about drug costs, has struggled to get some of his PH medications covered. He said the advocacy event helped him learn about policies that could improve his access to treatment.
Keep up with PHA advocacy efforts and find out when we have our next advocacy event. Sign up for our Advocacy Action Alert monthly newsletter or email us about how to get involved.
