Supplemental oxygen therapy, supplied through tanks or an oxygen concentrator, plays a major role in the quality of life of patients with low oxygen levels due to pulmonary arterial hypertension (PAH). However, these patients and others who need supplemental oxygen have had an increasingly difficult time accessing it in recent years. 

The US Centers for Medicare and Medicaid Services (CMS) in 2003 introduced the Durable Medical Equipment, Prosthetics, Orthotics, and Supplies (DMEPOS) Competitive Bidding Program, and it was soon implemented nationwide. Competitive bidding originated as a way for Medicare to save on reimbursement fees for durable medical equipment companies, and CMS experts expect the agency will save up to $600 million over the 3-year Round 2021 contract performance period.

However, competitive bidding has also significantly reduced patients’ access to oxygen and oxygen equipment, according to the American Association for Respiratory Care, which is working for reforms.

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A Loss of Independence

Colleen Connor, 54, a patient with PAH from West Chester, Pennsylvania, is an advocate for oxygen access reform and a member of the Pulmonary Hypertension Association (PHA) and the American Board of Internal Medicine (ABIM) Pulmonary Disease Board. She advocates for 4 pillars of reform

  • Patient-centric care for supplemental oxygen, including changing the definition used by medical equipment companies from home oxygen to supplemental oxygen
  • Ensuring access to liquid oxygen for patients for whom it is medically necessary
  • Reimbursement for respiratory therapists who participate and are engaged in oxygen therapy
  • Ensuring predictable and adequate reimbursement and protecting against fraud and abuse, using national standardized documentation.

Connor said that when she was diagnosed in 2007, a respiratory therapist came to her house to make sure the oxygen she was given met her needs, educated her on oxygen access, and recommended a liquid oxygen system. 

Colleen Connor and her daughter Keira
Colleen Connor, 54, (right) with her daughter Keira, 19, at a family event in August 2023. (Photo courtesy of Colleen Connor)

“I was able to still try to be independent [using liquid oxygen]. I was able to go grocery shopping by myself. I was able to play with my kids in the grass. I was able to go for a walk on the beach. I was able to participate with my husband in teaching my kids how to ride bikes,” she said. 

Connor said a respiratory therapist has not visited her in the last 15 years and she no longer receives liquid oxygen. After recovering from a breast cancer diagnosis and seeking liquid oxygen, she learned her former oxygen provider had stopped offering it. When she looked for a new provider, calling no less than 20 of them, she found they would not provide liquid oxygen to new patients. 

Connor now uses 2 size E compressed oxygen tanks outside her home at a setting of 6 LPM. She said they last only 1.9 hours each on continuous flow and are cumbersome, keeping her from everyday activities such as pushing a grocery cart or walking on a beach with family. “When liquid oxygen was taken away, my independence was basically taken from me,” she said.

With her new oxygen schedule, Connor said she has to ration what she uses outside of her house; her oxygen level is 70%-80% oxidation when out of the house with movement. Most of that time is spent working on advocacy with PHA, ABIM, and a breast cancer organization. 

She said she worries for others who don’t have the same physical ability to leave home, and that leaving home with not enough oxygen could harm her health. “Every time my oxygen is down in the 80s and 70s and 60s, it is wreaking havoc on my heart and my organs,” she said.

Nancy Zeppa, who was diagnosed with PAH in 2019, uses a portable oxygen concentrator, though she is trying to be switched to a size D oxygen concentrator. Zeppa, 60, from Burlington, New Jersey, said she knows a fellow patient who has only enough oxygen to go outside for 14 hours a week.

Nancy Zeppa
Nancy Zeppa (Photo courtesy of Nancy Zeppa)

“You can’t live a life if you can only go outside for 14 hours a week,” she said. “We’re not dying here. We’re living. These are patients who have full lives.” 

Zeppa said she had never been given options on the oxygen she received after she was hospitalized and diagnosed, nor was she able to meet with a respiratory therapist to learn about her oxygen needs.

“There was no respiratory therapist, there was no ‘How do I live on oxygen?’ They said . . . you’re going to take this tank home with you, and an oxygen company is going to come over and deliver your stuff.” 

Zeppa said she now buys most of her additional equipment on Amazon. 

‘They’re Just Pushing Us to the Sidelines’

Denver, Colorado resident Amy Burant, 52, a patient with NY functional class 2 PAH, said patient access has become limited because providing oxygen no longer makes business sense for companies. She said it was explained to her that a company can vastly underbid on oxygen care to receive the contract, but then, “they’re going to get it for $8 a patient, but it cost them $250 a patient … innately they’re going to lose $170 per patient.” 

Burant has been on oxygen since 2012 and liquid oxygen since 2015. She said her experience as a nurse helped her advocate for herself and her oxygen access in a language the medical industry would understand. She informs friends and family who are on oxygen that they can ask for different equipment and are not locked into what they are given. 

In most of her interactions with them, Burant said she found medical equipment companies to be very dismissive. “It does make you feel marginalized, where it’s like, well, your life isn’t really important. We’re just going to keep you alive until you’re not. And . . . that is not enough.”

As an avid traveler, Burant said she needed liquid oxygen to enable her traveling and quality of life, but it has become increasingly difficult to find oxygen suppliers that carry liquid oxygen in other states. She is also no longer able to have needed oxygen delivered to cruise ships. 

Burant is also now concerned about her liquid oxygen access at home after her delivery driver texted her that the medical equipment company was shutting down their liquid oxygen division but that Burant’s name was not on the cancellation list yet. Burant said it was very anxiety-inducing but she is waiting to hear from the company more formally. 

Connor said when CMS began the competitive bidding process “all these companies determined that it was not worth their while to have or serve patients liquid oxygen.” 

“I know it’s all based on the fact that they are not reimbursed. So I do understand their perspective on it. What frustrates me is that this has been a policy decision that came about when the [CMS] began this competitive bidding process.”

All of the changes she has seen are a result of policy, Connor said—policy that is in need of reform.

“It’s terrible that they are pushing an entire community of not just pulmonary hypertension patients, but of patients who are needing supplemental oxygen,” she said. “They’re just pushing us to the sidelines, they’re forcing us to limit our lives, our productivity, what we can give back to society, our livelihood.”