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 Annual Alpha-1 National Conference: The largest gathering of Alphas

Tuesday, June 18, 2019
The city of Orlando, Florida, will be the site of the largest gathering of Alphas, caregivers, family members, researchers, industry representatives, and the Alpha-1 community at large, to date, as the Alpha-1 Foundation holds its 28th Annual...

CSL Behring initiates voluntary recall for 4 lots of Zemaira

Thursday, June 6, 2019
The Alpha-1 Foundation was informed by CSL Behring that a Voluntary Biological Product Recall is being initiated for 4 lots of Zemaira®, their prescription drug for augmentation therapy for the treatment of Alpha-1 Antitrypsin Deficiency...

Here’s the “Scoop” on the Iowa Walk

Tuesday, June 4, 2019
Filled with families, friends, laughter and of course, ice cream, the Iowa Alpha-1 Get the Scoop Walk is one not to be missed. Like most walks, it was started with a small group, and now, 11 years later, this walk has become one of the most...

Alpha-1 Hero Walk raises funds and awareness for Alpha-1

Thursday, May 23, 2019
The 9th Annual Alpha-1 Hero Walk took place on May 4th, in Richmond, VA, where 75 attendees walked to raise awareness and funds for Alpha-1 Antitrypsin Deficiency (Alpha-1) research and related programs, exceeding $11,000. Pamela VanScoy, Walk...

Alpha-1 Foundation celebrates the 2019 research grants

Tuesday, May 21, 2019
The Alpha-1 Foundation (A1F) hosted a reception on Monday, May 20, 2019, to honor the newly awarded research grant recipients, where 158 guests joined at the Perot Museum in Dallas, Texas, in conjunction with the 2019 American Thoracic...

New method could help find potential treatments for rare diseases

Monday, May 20, 2019
Finding treatments for rare diseases is difficult: because they affect such a small number of people, research funding and other resources may be limited. Even if researchers are interested in studying a rare disease, the methods for testing...

Celebration of Life 2019: “Alpha-1 Derby: Betting on the cure”

Friday, May 10, 2019
On Monday, April 29th, the Alpha-1 Foundation welcomed friends, family, physicians, researchers, and industry partners to the 19th Annual Celebration of Life, the Foundation’s signature fundraising event in Miami Beach, Florida. The event is...

Funding for NIH increased after House Appropriations Committee approves funding bill

Friday, May 10, 2019
The House Appropriations Committee approved the fiscal year 2020 Labor, Health and Human Services, Education, and Related Agencies bill, on Wednesday, May 8, 2019. The legislation includes funding for programs within the Departments of Labor,...

NORD releases principles to lower the cost of prescription drugs

Wednesday, May 8, 2019
The National Organization for Rare Disorders (NORD), which represents the 25-30 million Americans living with rare disorders, including Alpha-1 Antitrypsin Deficiency (Alpha-1), announced its development of key drug pricing principles,...

Alpha-1 Foundation attends Coalition of Patient Advocacy Groups (CPAG) Meeting

Tuesday, May 7, 2019
The Alpha-1 community was well represented as the Alpha-1 Foundation attended the Coalition of Patient Advocacy Groups (CPAG) Meeting, in Rockville, MD, on April 30, 2019. Photo (left to right): Jamie Sullivan, COPD Foundation; David Fernandez,...

FDA approves new, larger vial sizes for Alpha-1 augmentation therapy

Thursday, April 25, 2019
The U.S. Food and Drug Administration (FDA) has approved single-vial dosing (4-gram and 5-gram vial sizes) for ZEMAIRA® [Alpha1-Proteinase Inhibitor] for augmentation therapy, the current treatment for Alpha-1 Antitrypsin Deficiency (Alpha-1)...

Alpha-1 Foundation co-sponsors congressional reception for the NHLBI Division of Lung Diseases

Wednesday, April 17, 2019
On April 9, 2019, the Alpha-1 Foundation was proud to be a co-sponsor of the congressional reception to celebrate the 50th anniversary of the Division of Lung Diseases of the National Heart, Lung and Blood Institute (NHLBI), an institute of the...

Article Search

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