As a patient living with a chronic respiratory condition, the constant news about cutting government programs and improving efficiencies can honestly be a bit anxiety-provoking. While these are worthy goals, reforms should be implemented in a way that does not disrupt patient care—especially when it comes to medical oxygen.
I am a longtime patient advocate, advisor, and support group leader for several advocacy organizations who has been living with lung damage from a combination of alpha-1 antitrypsin deficiency and occupational exposure to a respiratory irritant for over a decade. My disease has progressed to the point where I am dependent on oxygen at night and for travelling.
I am also the caregiver to my mom, who is also on supplemental oxygen. She relies on Medicare to provide her oxygen access so that she can live a limited normal life. That is why I strongly support efforts in Congress to reform Medicare’s supplemental oxygen benefit.
Access to supplies and services is essential to staying active, remaining in the workforce, and sustaining a high quality of life. Here in San Diego, there are only two major oxygen suppliers, both of whom offer the same limited options for oxygen equipment.
Under Medicare, people like my mom are locked into a five-year contract with the supplier for her oxygen and supplies, regardless of any changes in their condition or problems that may pop up. For example, the oxygen concentrator she currently has is so dated, the company that made it went out of business years ago. It weighs around 50 pounds and even both of us working together can barely move it around the house, let alone outside.
For patients with advanced lung diseases requiring high-flow supplemental oxygen, unstable Medicare reimbursement rates and a lack of accessible liquid oxygen equipment — which is much lighter and portable compared to heavy, quickly expendable oxygen tanks — can cause some patients to be tethered to the hospital or home.
My mom’s doctors suggested she retire early because of her health, but she cannot enjoy many of the things people do in their retirement. Her oxygen supplier, despite being one of the largest in the country and having a dedicated “travel department,” cannot provide her equipment to keep her oxygen levels safe. She was forced to buy her own equipment out of her own pocket to have a decent quality of life and visit family and friends overnight.
Many seniors and others with COPD cannot afford that kind of purchase. And why should they, when Medicare is supposed to provide coverage? But if Medicare rates do not cover the cost of supplying the equipment, it is no surprise that suppliers cannot provide it.
A patient’s respiratory condition should not define them; therefore, policymakers should recognize oxygen users as active, engaged members of their communities.
Over 1.5 million Medicare beneficiaries with severe respiratory diseases receive supplemental oxygen each year to help them breathe, sleep, and live more independently. We recognize the system is not perfect and can lead to access problems for patients, which is why advocates are proactively leading efforts to drive greater efficiencies, safeguard Medicare beneficiaries, and root out bad actors from the Medicare system.
In fact, protecting beneficiary access is the purpose behind the Supplemental Oxygen Access Reform Act, or SOAR. This act would reform Medicare’s supplemental oxygen benefit to protect access for Americans who rely on medical oxygen to maintain independence, mobility, and overall wellbeing.
The SOAR Act establishes a specific set of oxygen supplier responsibilities to support and protect Medicare patients who rely on supplemental oxygen and respiratory therapy services. It requires all oxygen suppliers to provide written and verbal education given by a licensed clinical specialist (rather than a delivery technician) to beneficiaries and caregivers regarding oxygen and oxygen-related equipment and services.
Suppliers would also be required to provide 24-hour, on-call assistance to respond to beneficiaries’ immediate needs and concerns. By clarifying these responsibilities, the SOAR Act would help ensure patients have the support they need to properly and safely use supplemental oxygen equipment.
The SOAR Act would also establish much-needed protections in a beneficiary “Bill of Rights.” This includes codifying patients’ right to choose their local oxygen supplier and to change suppliers, to receive clear communications from suppliers, and to refuse or discontinue treatment on their own terms.
These reforms are not just about accessing medical oxygen; they are about accessing the correct modality of supplemental oxygen that allows individuals to thrive while effectively managing their health condition.
Congress can take a major step forward in modernizing our healthcare system by passing the SOAR Act and enabling beneficiaries to live on their terms with the help of supplemental oxygen.
Angela Merkins is a longtime patient advocate, advisor, and support group leader for several advocacy organizations. She has been living with lung damage from a combination of alpha-1 antitrypsin deficiency and occupational exposure to a respiratory irritant for over a decade and depends on supplemental oxygen therapy during sleep and travel. She resides in Oceanside and also helps care for her mother, who has also been diagnosed with alpha-1 and is an oxygen therapy user.
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