Like many 16-year-olds, Cash Harpp goes to school and loves playing video games. However, he needs continuous high-flow oxygen to get through his school day.

Cash, who was diagnosed with pulmonary hypertension (PH) in 2015, has needed supplemental oxygen since elementary school. Throughout his childhood, he’s had to use compressed oxygen tanks, called e-tanks. The heavy green canisters need their own wheeled cart to move them around, so Cash pulls the equipment behind him as he navigates the halls of his school. Pulling the oxygen is particularly difficult because Cash has the use of only one hand.

The Harpp family of Indianapolis has faced many struggles related to Cash’s supplemental oxygen needs. Their story is typical of others who don’t have access to the most appropriate type of oxygen for their needs.

At issue
Supplemental oxygen is a vital component of treatment for many people with PH. Limited forms of oxygen are available to people who struggle with the physical demands of heavy oxygen canisters.

Although liquid oxygen offers the highest degree of mobility and highest quality of life for those with high-flow oxygen needs, many oxygen suppliers no longer provide it. This lack of options limits PH patients’ engagement in everyday activities and sometimes leaves them homebound when they might otherwise be able to work or go to school.

The Pulmonary Hypertension Association (PHA) recognizes the importance of appropriate oxygen delivery and is working with other patient organizations to secure oxygen access reform.

Oxygen access reform will help patients who lack recourse when medical equipment suppliers are unresponsive about problems with oxygen equipment. PHA seeks to ensure accountability and prioritize patient-centered care related to oxygen supply.

Challenges continue
The Harpps are acutely aware of the need for reform. At the beginning of 2022, the family finally secured a portable oxygen concentrator. Now Cash can wear the oxygen concentrator on his back, significantly improving his quality of life.

“Cash has more energy after school, and he actually wants to go out to eat with the family now that he has the portable concentrator,” dad Jeff Harpp says. “With the e-tank it was too difficult for him to go out to the store; he didn’t want to do things with us outside of the house.”

However, challenges remain: The machine has a two-hour battery life, so Cash must plan his schedule around access to a wall outlet several times a day. And Jeff has had an infuriating battle trying to keep his son’s portable oxygen concentrator running.

Almost as soon as the equipment arrived, it stopped working. It took the family months to get a technician to look at it and tell them the battery was faulty. Just a few weeks after the replacement battery was installed, the machine again stopped working. That time the problem was with the column that converts air into medical grade oxygen. After 10 months of reaching out with minimal response, multiple delays, and poor communication from their equipment supplier Lincare, Jeff finally secured the replacement part in February 2023.

“I can’t calculate the number of hours I tried to get a response,” Jeff says. “I still hear the hold music in my sleep. It has never taken fewer than 45 minutes for me to reach someone at Lincare.”

Jeff waited more than a month to hear from Lincare after filing a complaint. The response didn’t address his concerns. “The ability to complain is made so difficult that people are discouraged from reaching out. It’s shameful.”

Losing out on experiences
Another person affected by liquid oxygen shortages is Barbara Linser of Cincinnati. Barb, who has lived with PH for 22 years, had a relatively active life, thanks to the liquid oxygen treatment her doctor prescribed.

Her lifestyle changed when Lincare stopped delivering liquid oxygen without notice and began providing e-tanks in March 2021.

Liquid oxygen tanks are light enough to be strapped to the back so patients don’t have to carry them by hand. They hold a sufficient volume of oxygen to provide a continuous flow for six to eight hours so Barb can breathe easily while walking. E-tanks are heavier and hold a smaller volume of oxygen, so they sustain her for only a fraction of the time.

The forced transition to the cumbersome e-tanks caused a steep decline in Barb’s quality of life. She now struggles with routine errands and her travel is limited.

“Before I lost the liquid oxygen system, I could play with my grandkids freely and move around easily. After that time, I have not even been able to see them as much. I am unable to get to many of their games and other activities like concerts, plays and grandparents day at their school. It breaks my heart.”

In August 2022, Barb’s youngest son got married. Although she attended his wedding, she couldn’t have the mother-son dance she had been looking forward to because of the difficulty of maneuvering her e-tank.

“The amount of hassle with this oxygen option is so much, moving it in and out of the car, running out of the canisters. The whole day is full of hassle.

The new limitations have caused Barb to become depressed. At a medical visit shortly after losing access to liquid oxygen, Barb’s PH specialist said, “I’ve never seen you this bad.”

Her mood isn’t the only thing that has declined. The next pulmonary function test Barb took after losing access to liquid oxygen showed a significant downturn, and it has since remained at that level.

Advocating for oxygen

It can be difficult to imagine why oxygen wouldn’t be readily available to those with lung disease. With Medicare’s increasing focus on curtailing costs, suppliers often choose to substitute less expensive alternatives, replacing supplies of liquid oxygen with heavy tanks that are hard to move and hold less. That creates problems for oxygen users who find it increasingly difficult to participate in family and community activities that extend beyond medical clinics and home.

The oxygen access problem became so widespread that more than two dozen health care organizations including PHA came together this year to call for legislative reform.

Since access to portable, accessible and readily available oxygen translates to a better quality of life, Barb and the Cash Harpp family are just two among thousands of patients with lung disease signing petitions.

“It’s hard enough with this disease, and this [lack of access] makes it harder, not easier,” Barb says.

This article originally appeared in the summer 2023 issue of Pathlight magazine. Pathlight is the Pulmonary Hypertension Association’s quarterly member magazine. Join today to get your copy.