My patients shouldn’t have to endure ‘air hunger’
As you read this, you probably aren’t thinking about your next breath, while many of my pulmonary patients are. For Sheila Tines, a patient in Waltham, Massachusetts, with cystic fibrosis, every outing requires meticulous planning of each breath while pulling a heavy oxygen tank behind her. Her durable medical equipment supplier (DME) assured her each tank would last two hours. Yet on a recent everyday outing, Sheila found herself gasping for air just 48 minutes in, her tank unexpectedly empty. The 1.5 million people in the United States on long term supplemental oxygen (LTOT) live in constant fear of experiencing this kind of air hunger.
Sheila, who has been living with LTOT since 1997, has slowly been caged into her home as access to her supplemental oxygen has been stripped away. Decades of systemic failure and negligence have cast this vulnerable population aside “as damaged goods,” as Sheila views herself, in the eyes of Congress and DME companies. Patients with various pulmonary and cardiac conditions such as chronic obstructive pulmonary disease, cystic fibrosis and heart failure require supplemental oxygen outside of the hospital. But the process of being started on LTOT is a saga rife with administrative hurdles and delays due to criteria set by the Centers for Medicare and Medicaid Services (CMS) based on decades old data.
One might expect initiating such a critical lifeline at home would come with thorough instruction and ample support. John Massaua, a patient from Straham, New Hampshire, who’s been living with idiopathic pulmonary fibrosis since 2017, recalls his first home oxygen delivery, an experience far worse than your last home appliance delivery. John awaited the late delivery guy who simply dropped off his stationary concentrator (akin to a home air condition unit intended to concentrate ambient air), and two e-tanks (portable oxygen tanks) and told him to “have a nice day” without providing any instruction or set-up manual.
As with much of American health care, health favors the well-resourced.
Patients have very little choice as to which company provides their oxygen or what equipment they receive because the Competitive Bidding Program (CBP) CMS implemented in 2011 eliminated nearly 11,000 oxygen suppliers, effectively creating regional monopolies.
Sheila notes that patients typically receive old re-furbished units which provide only 94% oxygen at best, far from the expected 100% pure oxygen. When Sheila required higher flow rates of oxygen, she waited a year for Lincare, her DME company, to ultimately provide incorrect equipment.
Sheila was on liquid oxygen, a portable lightweight form of oxygen that allowed her a continued sense of normalcy outside her home, until Lincare suddenly discontinued it. Lincare’s decision locked Sheila in her home, ending her lively social life. Sheila’s attempted advocacy with local government and DME was met with a bureaucratic web of inefficiency and apathy. Patients now only have two options when it comes to leaving their homes: heavy e-tanks which weigh over 10 pounds and are restricted to two tanks regardless of need, or portable oxygen concentrators (POCs) which are rarely provided. Two e-tanks would leave John stranded on the side of the highway with low oxygen levels on his drive to and from Boston for doctor’s appointments, so he was forced to buy his own POC for nearly $4000.
Karla Schlichtmann, RRT, a respiratory therapist at Massachusetts General Hospital in Boston, must divert valuable time with patients to time spent tracking down or correcting orders with DME companies who consistently mishandle them. She notes companies do not automatically replace supplies or equipment when due, requiring patients and providers to take on a near full time job of wrangling DME companies to fulfill basic obligations.
As with much of American health care, health favors the well-resourced. John acknowledges he is fortunate to have the educational background to navigate and “MacGyver” the barren landscape in which patients on oxygen are abandoned. Sheila’s stationary oxygen concentrators quadrupled her energy bill. John spent $50,000 in medical expenses last year despite having robust insurance. Patients who have unstable housing face insurmountable barriers to using appropriate equipment. Uninsured or low-income patients are forced to accept shoddy equipment. Non-English speakers have limited avenues to advocate for themselves or find recourse for their grievances with DME companies.
The relegation of patients on LTOT to be “second class citizens,” as Sheila describes herself, is a deliberate consequence of key health care policies and budgetary decisions since the 1980s. Since its inception, the Medicare program paid for supplemental LTOT to be “for use in your home,” indicating intent of confining patients to their home. A series of budget acts over the past 4 decades disincentivized provision of the patient-friendly liquid oxygen and cut equipment availability and support for respiratory therapists. Oxygen rental payments were cut by over 30% and payments stopped after 36 months of service, revealing the system’s expectations that patients be left to die.
Walking alongside Sheila and John one can plainly see the importance of breath.
Regional bidding implemented by CBP catalyzed a cascade of oxygen service cuts that ensured the demise of quality LTOT. CBP was billed to reduce fraud, abuse, and waste in DME while maintaining access. The real fraud, however, is the number of patients who require oxygen who do not actually receive adequate supplies, resulting in an estimated 25 to 50k deaths annually. The data CMS used to later deem CBP a success is sparse and would never meet the threshold for publication in a peer reviewed journal, never mind being used to justify a multi-billion-dollar policy determining the fate of 1.5 million Americans.
The Supplemental Oxygen Access Reform (SOAR) Act, crucial bipartisan legislation currently introduced in Congress and backed by over 20 health organizations, is a long overdue avenue back to dignity and freedom for patients on LTOT. SOAR seeks to remove oxygen from the abysmal competitive bidding process and restore access to liquid oxygen which, for patients like Sheila and John, is critical to restoring their mobility. SOAR would also ensure funding for respiratory therapists so patients are not left stranded with complex equipment. Standardization of the oxygen acquisition process through SOAR will reduce administrative logjam for overburdened clinicians. Finally, the SOAR act will restore some semblance of dignity for patients on oxygen through increased user-friendliness of DME suppliers and increased patient-choice and flexibility.
Walking alongside Sheila and John one can plainly see the importance of breath. As physicians we take an oath to do no harm, yet are trapped providing care in a system perpetuating harm through policies that leave patients to suffer alone, confined and awaiting their deaths. Health care policy needs to ensure patients with all disabilities and disease can continue to live their lives to the fullest extent possible.
In a time mired by political divisiveness, the bipartisan SOAR Act is a powerful reminder of the potential for progress with partnership across the aisle. The SOAR Act is needed to untether patients confined by home oxygen and extend a lifeline allowing them return to the lives they so desperately wish to live.
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