When Colleen Connor spoke at the American Thoracic Society’s annual conference in May, her supplemental oxygen supplier didn’t deliver enough oxygen for the trip. Like many people who rely on supplemental oxygen, she tried to conserve the amount she used because her monthly allotment is limited.

“Imagine every time you leave your home, you need to plan how much time you will be outside your home and your activity level, so you know how much supplemental oxygen to sustain you,” Connor told congressional staffers in a June 5 PHA legislative briefing on Capitol Hill. “You are restricted by the monthly allocation you receive, so you are forced to make tough choices. I purposely ration my supplies, not using the amount I need, so I might be able to … spend more time with family or be outdoors. Even doing that, I can only leave my house 14 hours a week.”

Connor, a Pulmonary Hypertension Association board member, was among the PHA advocates who called for legislation to improve access to supplemental oxygen. They also urged legislators to support the Safe Step and HELP Copays acts.

The SOAR Act would make Medicare coverage of supplemental oxygen more flexible by removing it from the competitive bidding process, among other reforms.

The Safe Step Act seeks to limit step-therapy requirements by insurance companies. Step therapy requires people to try less expensive treatments than those their doctors prescribe. The insurance companies authorize the prescribed treatment only after the less expensive treatment fails.

The HELP Copays Act would ensure payments made on behalf of patients by third parties such as financial assistance foundations count toward patient deductibles or out-of-pocket maximums.

“PH therapies cost hundreds of thousands of dollars per year,” said Heather Mayberry, a clinical nurse specialist and PH clinical coordinator at Centra Lynchburg General Hospital. “Some manufacturers provide copay assistance, but not all insurance companies count this support towards a patient’s deductible or out-of-pocket obligation.”

Mayberry gave a thorough presentation about PH in the briefing. She touched on the rigors of the journey to diagnosis for providers and patients, as well as the challenges patients face in accessing the right combination of therapies.

Connor described her own journey to diagnosis, as well as her day-to-day oxygen challenges. She explained that she and others lost access to the types and amounts of oxygen they needed a few years ago when Medicare adopted competitive bidding for supplemental oxygen. Now she has to use tanks of compressed oxygen.

“The equipment we are forced to use now is very heavy and cumbersome. Instead of carrying a manageable 5-pound device in a backpack, it’s now a 15-pound tank on a cart. When you need two to three of them to go anywhere, you are no longer on your own.”

Connor brought an old liquid oxygen canister to demonstrate the difference between the lightweight portable device and the 15-pound tank she now has to wheel around everywhere she goes.

“Losing liquid oxygen has taken my independence away from me. Things I could do on my own, I now need to have someone accompany me.

Even when she had the more portable liquid oxygen, Connor was limited in what she could do with her family.

“No physical games or sports, and I was even prohibited from going on my children’s class trips that would be sedentary because oxygen tanks are not allowed on school buses.

“It’s been difficult to deal with the devastating implications of my cardiopulmonary disease and try to raise my family. And that was before access to the oxygen equipment I needed was taken away.”

Because patients can’t receive the type of equipment they need, PHA hears from caregivers who are terrified of needing to stop on the side of the road to change smaller oxygen tanks so they don’t run out on the way to a doctor appointment, she said. PHA also hears from doctors who should see their patients more frequently, especially those in rural areas. But patients’ oxygen supplies often are insufficient to make the long journeys to receive specialist care from PHA-accredited care centers that are best equipped to manage complex lung diseases like PH.

“Americans can and have died because of our inability to secure the equipment and amount of oxygen we need,” Connor told the legislative staffers.

“Americans are not given enough supplemental oxygen to live their lives,” she said. “Policy has dictated what type of oxygen and equipment we can have, which dictates how many hours we can go outside our homes.”

Former Broadway performer and long-time PHA volunteer Stephen Carter-Hicks also shared his PH story. He discussed how frightened he was when diagnosed and his frustrations with accessing treatments.

Carter-Hicks also discussed the importance of the Safe Step and HELP Copays acts. Step therapy policies are harmful and distressing to people who need to start life-saving treatment as early as possible, he said.

Carter-Hicks ended his remarks with a moving rendition of “You’ll Never Walk Alone” from the musical Carousel.

The briefing also featured remarks from PHA leaders and legislative staffers. Parker Reynolds of Sen. Bill Cassidy’s office (R-La.) and Colleen Nguyen of Sen. Mark Warner’s office (D-Va.) addressed the importance of the SOAR Act. They said their bosses — lead sponsors of the legislation — were proud to introduce such important legislation in Congress and urged other lawmakers to support the bills.

Other congressional staffers who attended the event included legislative aides for Rep. Adrian Smith (R-Neb.) and Sen. Amy Klobuchar (D-Minn.), original cosponsors of the bill.