Pulmonary hypertension advocates have met with 31 lawmakers’ offices since May to seek support for PHA legislative priorities. The advocacy campaign began May 5 in connection with World Pulmonary Hypertension Day.
The virtual advocacy meetings focused on the Supplemental Oxygen Access Reform Act, introduced this year in the House of Representatives and the Senate. Advocates also asked for support of the Safe Step Act and the HELP Copays Act. The Safe Step Act would create reasonable exceptions to insurance companies’ policies that require patients to first fail on a cheaper drug before covering a more expensive one. The HELP Copays Act would ensure payments made on behalf of patients by third parties count toward deductibles or out-of-pocket maximums.
The SOAR Act, which proposes to remove supplemental oxygen from Medicare’s competitive bidding process, would make oxygen and related equipment more affordable and accessible. The bill has gained 10 cosponsors in the House since PHA’s advocacy campaign began in May.
A day after Patti Sakoman and her son and caregiver Josh Franson met with health policy adviser Katie Paulson, she confirmed that Rep. Deborah Ross (D-N.C.) had cosponsored the bill.
“The SOAR Act is incredibly important as there is no generic for oxygen,” said Sakoman, who needed continuous-flow oxygen for a year and a half before moving to using oxygen only at night. She explained how she struggles with having enough oxygen tanks to get safely to and from doctor appointments, even with the help of her son. Franson offered “an incredibly heartfelt thank you” to Ross.
In addition to people with PH and caregivers, health care professionals teamed up to meet with their legislators.
Nurses Nesha Riding, Lori Reed and Meshia McCoy and pulmonologist Amy Case of Piedmont Pulmonary and Sleep Medicine in Atlanta met with Sens. Raphael Warnock and Jon Ossoff and Rep. Nikema Williams, all Democrats from Georgia.
Social worker Marina Salazar and nurse Sara Bravo of the University of California-San Francisco Medical Center, and Monica Penaranda, leader of PHA’s Los Angeles support group, met with staff from the offices of Sens. Alex Padilla and Laphonza Butler (both Democrats from California). Penaranda also met with staff from the office of Rep. Linda Sanchez (D-Calif.).
