Top Stories

Published on Thursday, April 21, 2016

Growing scarcity of liquid oxygen endangers patients, advocates say

Growing scarcity of liquid oxygen endangers patients, advocates say

Alphas and others with severe breathing problems who require high-flow oxygen are increasingly finding it difficult to obtain liquid oxygen, effectively making them homebound, forcing them to carry heavy compressed oxygen tanks around with them, or leaving them without the oxygen they need.

Liquid oxygen is lighter, easier to carry, and lasts longer than compressed oxygen, but it is also much more expensive. Medicare is seeking to reduce costs, and liquid oxygen is the most expensive oxygen delivery system. Suppliers in turn have significantly slowed down production because they cannot charge enough to make a profit.

The widening elimination of liquid oxygen is rooted in a competitive bidding program that Medicare put into effect in 2011. The program, which has been expanding in phases across the country over the last five years, was intended to reduce the cost of home medical equipment and services, including wheelchairs, beds and oxygen. But it has also caused providers to nearly phase out liquid oxygen because they cannot pass the high cost of liquid oxygen to Medicare or the consumers.

This means that people with severe lung disease are seeing their liquid oxygen replaced with large compressed oxygen tanks. Those who use liquid oxygen to provide for their mobility are often unable to pull heavy compressed oxygen tanks around behind them, or to load up enough tanks in their vehicles so that they can breathe away from home for more than a short time.

“Basically, it’s reached a crisis state. Patients, I believe, are suffering, and some may even be dying because of the Medicare policy,” said Robert Sandhaus, MD, clinical director of the Alpha-1 Foundation and medical director of AlphaNet.

“They say their program is a huge success,” Sandhaus said. “They’re saving a lot of money. By instituting this competitive bidding, they’ve really cut down on the amount of money that they’re having to pay for oxygen, but they’re doing that at the expense of patients not being able to ambulate, and they’re also doing it at the expense of some patients probably becoming sicker or even dying because they can’t get the oxygen they need. Most oxygen companies nowadays have dropped liquid oxygen entirely from their inventory, so some patients that could only get sufficient oxygen when they’re outside the home by using a liquid system are basically not able to get the oxygen they need.”

Some Alphas requiring very high-flow oxygen are trying to compensate by carrying around two tanks of oxygen with two cannulas – one extending from each tank – so they can get the oxygen necessary to do the things they want to do, Sandhaus said.

“The politicians don’t care,” said Bill Clark, the COPD Foundation’s senior director of patient and outreach programs. “All they care is that Medicare is saving a ton of money. We’re technologically so far past that, but we’re taking oxygen delivery back to the 1950s modality, all in the interest of profit and saving money.”

Clark, who is a lung-affected Alpha, has heard many horror stories from people with chronic obstructive pulmonary disease (COPD) who have lost their liquid oxygen under the program. One elderly woman, he said, had her liquid oxygen taken away by her supplier. It was replaced with a large, 5-foot-tall, compressed oxygen tank that had a 20-foot-long tube. Since the tube was not long enough to reach her bathroom, he said, she was forced to relieve herself in a bucket.

Another person with COPD was hospitalized because she was unable to breathe compressed air. Liquid oxygen produces a vapor that is easier for many supplemental oxygen users to breathe. Others with COPD have told Clark they were charged hundreds of dollars in surplus fees to get the oxygen they needed when they traveled out of town.

To provide liquid oxygen to a patient’s home, a supplier must place a reservoir inside the house. The patient can then run a line to their bedroom at night to maintain a steady supply. Or, the patient could use the reservoir to fill up small, portable oxygen tanks, each one lasting several hours. The liquid oxygen and the equipment used to provide it are the most expensive components of delivering oxygen in this way. By being forced to use a home concentrator many patients are experiencing higher utility bills to run the equipment, a cost many can ill-afford

In the past, suppliers have made huge profits by providing oxygen and billing Medicare for the costs. But several years ago, officials with Medicare began looking for ways to reduce the multi-billion-dollar cost of supplemental oxygen. Medicare set up a bidding process for suppliers, and offered exclusive contracts to the lowest bidders. Larger companies sought to eliminate their competition by setting prices so low that smaller suppliers could not compete.

But soon, the larger companies realized they could not keep liquid oxygen prices artificially low, either. By then, however, they were locked into low-bid contracts with Medicare and were unable to raise prices high enough to turn a profit. Many suppliers began opting out of the liquid oxygen supply business altogether, and switched their customers to the cheaper compressed oxygen instead.

By law, switching a patient’s oxygen modality from liquid oxygen to compressed oxygen must include a consultation with the patient and a prescription from his or her doctor. But in many cases, Clark said, the companies made the switch without doing either, and Medicare is not doing enough to enforce the law.

Medicare officials did not immediately respond to requests for comment about the program.

“Due to drastic cuts for supplemental oxygen reimbursement, liquid oxygen is no longer available in much of the country, and patients who are not physically able to transport or manage multiple cylinders of compressed oxygen can no longer leave their homes,” Clark said. “Another result of competitive bidding is that supplemental oxygen patients using compressed tanks for mobility are now being severely restricted as to the number of tanks they are supplied each month, and now must ration their use. Further, delivery of smaller compressed oxygen tanks (“m” tanks) that would allow greater mobility for many are being reduced or eliminated entirely by the oxygen suppliers, who claim they are not feasible financially.”

Clark is asking Medicare to look closely at the issue and do anything within the scope of its authority to remove oxygen from competitive bidding.

“It is imperative to create an acceptable reimbursement structure for supplemental oxygen that recognizes the needs and locations of patients vary, and ensures all types of oxygen remain available and accessible to patients throughout the country,” he said. “The consequence is that if this continues, patients’ health and quality of life will be significantly endangered.”


The Celtic Connection 2019: The pot of gold at the end of the rainbow

Sunday, March 17, 2019
The 2019 Celtic Connection, an annual Building Friends for a Cure event held in Boston, Massachusetts, joined 385 guests for a great night to raise awareness and over $138,000 for Alpha-1 Antitrypsin Deficiency (Alpha-1) research and related...

FDA to host public meeting on: “Patient Perspectives on the Impact of Rare Diseases,” in April

Wednesday, March 6, 2019
The U.S. Food and Drug Administration (FDA) announced a public meeting and an opportunity for public comment on “Patient Perspectives on the Impact of Rare Diseases: Bridging the Commonalities,” on April 29th, 2019. This public...

The energy from Rare Disease Day continues

Tuesday, March 5, 2019
On February 28th, 2019, the Alpha-1 Foundation proudly wore its stripes to support the National Institutes of Health (NIH) sponsored Rare Disease Day (RDD) along with patient organizations, politicians, caregivers, medical professionals,...

Florida couple raising awareness for rare disease

Wednesday, February 27, 2019
Walking from his front door to the driveway’s end can leave Doug Peters gasping for air. Four years ago, he was diagnosed with Alpha-1 Antitrypsin Deficiency (Alpha-1). “It was a tough reality when they explained to us why he has...

The Alpha-1 Foundation gears up for the 2019 Global meetings in Dubrovnik, Croatia

Tuesday, February 26, 2019
MIAMI, Feb. 26th, 2019 - The 7th Alpha-1 Global Patient Congress and 4th International Research Conference on Alpha-1 Antitrypsin will be held April 3-6, at the Sheraton Dubrovnik Riviera Hotel in Dubrovnik, Croatia. Patient leaders, physicians...

The Johnsons are ready to party for a cure… ‘80s style!

Friday, February 15, 2019
Richard and Sarah Johnson of St. Johns, Florida, have not stop believing in the mission of the Alpha-1 Foundation. Eleven years ago, when their son Lucas and daughter Grace were diagnosed with Alpha-1 Antitrypsin Deficiency (Alpha-1) they made a...

Alpha-1 Foundation expresses gratitude to plasma donors

Wednesday, February 13, 2019
Recently, the New York Times published an article that, in the opinion of the Alpha-1 Foundation, portrayed an image of plasma donors that only focused on one side of the story.  Plasma donors can come from all backgrounds and levels of...

NORD continues to bridge the gap between patients and their health care

Thursday, February 7, 2019
Since its inception in the early 1980s, the National Organization for Rare Disorders (NORD) has been instrumental in providing assistance to individuals affected by rare diseases and their families; it was influential in the Orphan Drug Act of...

Alpha-1 Foundation welcomes new President and CEO

Monday, February 4, 2019
The Alpha-1 Foundation Board of Directors is excited to announce the appointment of Miriam O’Day as the new president and chief executive officer (CEO) of the Alpha-1 Foundation. “We thank Miriam for serving as interim CEO, since...

Tips and resources for Alphas and the cold weather

Wednesday, January 30, 2019
Cold weather conditions can worsen symptoms for lung affected Alphas and for patients with Chronic Obstructive Pulmonary Disease (COPD), as low temperatures can often lead to fatigue and windy days can cause shortness of breath. Also, the dry...

Alpha friend and leader Jim Quill passes away

Monday, January 14, 2019
It is with a heavy heart that the Alpha-1 Foundation shares the passing of a dear friend and leader, James Quill on Sunday, January 13th, 2019 in Bluffton, South Carolina. He was 67. Jim was on the Alpha-1 Foundation Board of Directors since...

Shire is now part of Takeda

Tuesday, January 8, 2019
Takeda Pharmaceutical Company Ltd. and Shire Biotechnology company took an exciting step forward by completing the acquisition that was announced in 2018 and becoming a global biopharmaceutical company headquartered in...

Article Search

Enter keywords in text box and click Search button for results.