Thekla McGinley (right) shares PH materials with Anna Wilbourn in the district office of Rep. French Hill (R-Arkansas).

As Congress debates what the next COVID-19 legislative package should include, the Pulmonary Hypertension Association urges the pulmonary hypertension (PH) community to contact its legislators. Ask lawmakers to end surprise medical billing and life-threatening step therapy requirements, which affect PH patients like Mike Naple and Thekla McGinley.

Mike was surprised with a whopping bill soon after his 2016 PH diagnosis, when his doctors prescribed 12 weeks of pulmonary rehabilitation. He thought he was prescribed 12 weeks of rehab because that’s what his insurance covered. But he was billed $5,000.

“I had just spent two weeks in hospitals trying to digest my ‘new normal’ with a potentially fatal, rare disease,” he says. “I did the rehab because I wanted to follow my doctor’s orders. I wanted to be in compliance with my treatment plan for a disease that I had never heard of, and I wanted to go back to work. The pulmonary rehab was essential to my post-hospitalization recovery.”

He fought the surprise bill, but his insurance company refused to pay because the rehab program was out-of-network. He eventually worked out a long-term payment plan with a collection agency.

Thekla, a PHA support group leader from Arkansas, also faced insurance-related challenges. During the first year her PH was treated by a local doctor, then she switched to an out-of-state PH specialist to provide more targeted care. Thekla’s health insurance refused to cover her prescribed medication.

When her specialist took her off IV medication, she didn’t realize it was to reduce her out-of-pocket costs. “After coming off IV therapy, my health went downhill fast,” she says. The medication expenses and the difficulty of traveling began taking a huge toll, and she eventually returned to the original local doctor and went back on IV therapy.

“Although my insurance knew that I was going to a specialist that wasn’t available in my state, they still wouldn’t pay — and [it] put my life at risk,” Thekla says.

After the emotional rollercoaster during her first three years of care, Thekla became a PH advocate. She works to get the word out about insurance challenges “to anyone who will listen.”

“No one should ever have to feel that their life is … considered less important than an arbitrary insurance guideline,” she says.

Congress has the chance to make life better for people with PH, but we need your voice. Use PHA’s advocacy tools to email your members of Congress in as few as three minutes. Make sure other PH patients don’t face challenges like Thekla’s and Mike’s. Join our “Together Through Advocacy” campaign,” and take action now.

Mike Naple