Influencing Change

Pulmonary hypertension (PH) advocates are sharing their stories to urge reforms that address treatment and insurance challenges. In recent months, advocates have addressed step therapy, copay accumulators and high costs of PH treatment with members of Congress and state legislators. “We need to take our personal stories to Congress and let them know what our life and experiences are,” says Karen Fragale of Johnston, Iowa. Karen spoke with legislative staff from the offices of U.S. Sens. Joni Ernst and Chuck Grassley, both Iowa Republicans. Karen shared how she was discharged from the hospital without a referral or prescription after a medical professional told her family that she had less than a year to live.

‘We need to take our personal stories to Congress and let them know what our life and experiences are.’

– Karen Fragale

Karen struggles with health insurance plans that routinely refuse to cover her PH medications after the first year or that require her to shift to less expensive medications than those her physician prescribed. Karen asked her senators to help reduce those practices by co-sponsoring the Safe Step Act. Similarly, Gerry Langan spoke with staff from the offices of Sen. Marco Rubio, R-Florida, and Rep. Charlie Crist, D-Florida. Until recently, Gerry had minimal out-of-pocket costs for her PH medications because her husband serves in the military and they were covered by

‘The only way to make real change it is to put yourself out there.’

– Gerry Langan

Tricare. When Gerry’s husband shifted to military reserve to take a federal job, the family had to switch health plans, which dramatically increased Gerry’s out-of-pocket costs. Because Rubio is a leader in the health appropriations process for the federal budget, Gerry also encouraged the senator to increase NIH funding for FY 2022. “I encourage everyone to find their voices and share their story,” Gerry says. “The only way to make real change it is to put yourself out there.”

On the state level, PHA Chair Colleen Brunetti recently testified before the Connecticut legislature from a patient’s perspective. She asked the General Assembly’s Insurance and Real Estate Committee to support of a bill to eliminate copay accumulators, which have affected her personally. Copay accumulators allow health insurance companies to make money from copay cards and grants while keeping patients’ out-of-pocket responsibility high. For example, an insurance plan might accept copay cards for PH medications but won’t apply them to deductibles or out-of-pocket maximums. Interested in sharing your story with your lawmakers? The Pulmonary Hypertension Association provides free advocacy training.

Contact Advocacy@PHAssociation.org, or call 301-565-3004 x749.