Holly Szmutko is a passionate volunteer and advocate on behalf of the pulmonary hypertension (PH) community. She became involved after she was diagnosed with pulmonary hypertension in January 2019 after several misdiagnoses. Then she had to try multiple therapy options before finding a combination that made her feel better instead of worse. She was so sick she couldn’t work.

Despite those challenges, she started the Northwest Indiana PH PHriends Support Group and began meeting with her members of Congress within months of her diagnosis. She wanted to advocate for herself and be a voice for others.

Holly’s legislative advocacy began with PHA’s “Advocacy August” campaign – an opportunity for those affected by PH to meet members of Congress at in their state offices. After PHA helped Holly with meeting requests, the offices of Sen. Mike Braun, R-Ind., and Rep. Pete Visclosky, D-Ind., responded.

The staff person from Braun’s office spent an hour with her and asked lots of questions, but Holly says the highlight of her advocacy efforts so far is her meeting with Visclosky.

Holly used PHA’s resources to ask Visclosky to co-sponsor the Safe Step Act, a bill to protect people with life-threatening conditions. The bill aims to allow patients to get the treatment they need, rather than forcing them to accept less expensive, less effective therapy. She also shared her challenge with the Medicare waiting period. By law, Holly had to wait two years after qualifying for disability assistance before she could qualify for Medicare. She couldn’t afford the marketplace plan available in her area but didn’t qualify for Medicaid.

The results of the meeting were beyond what Holly had hoped for. Not only did Visclosky help her get a waiver so she could receive Medicaid, he also co-sponsored the Safe Step Act.

Holly encourages others to contact Congress about the Safe Step Act. “Members of Congress work for us,” she says. “It never hurts to ask. If you don’t do it, who will? It is rewarding to fight for yourself and to fight for others.”