It’s hard to imagine anything more essential to life than the ability to breathe. Yet Medicare Advantage plans are denying hundreds of claims for ventilators to patients with amyotrophic lateral sclerosis, or ALS, as not “medically necessary.”
Often referred to as Lou Gehrig’s disease, ALS is an incurable disease that progressively weakens the muscles, robbing patients of voluntary movements like walking or talking. As the disease advances, many patients need a ventilator to breathe.
If a person living with ALS has traditional Medicare, they”ll almost certainly have no problem getting her claim for a ventilator covered. But if they have a privately administered Medicare Advantage plan — like nearly half of all Medicare beneficiaries — their claim will probably be denied.
It’s a cynical gambit by insurers that patients as seriously ill as those with ALS won’t have the energy or time to fight a denial. It’s also blatantly illegal.
The government requires Medicare Advantage plans to provide the same level of care patients would get under traditional Medicare. Yet one Medicare Advantage plan from United Healthcare denied as many as 86% of authorizations for non-invasive ventilation, or NIV, devices prescribed by doctors for ALS patients. Another plan denied 64% of NIV authorizations.
Medicare Advantage plans entice patients with low premiums and fringe benefits like dental care. The plans can seem like a good deal until a patient experiences a serious health setback — and starts costing their insurer real money. An audit of Medicare Advantage plans by the Office of the Inspector General found that nearly 20% of claims were denied despite meeting Medicare’s rules for coverage.
In other cases, insurers may erect so many time-consuming obstacles that patients and their families may feel like they’re being denied coverage. Medicare Advantage plans make “prior authorization” requests at significantly higher rates than traditional Medicare. They often require patients to go through lengthy “fail first” processes using lower-cost machines designed for sleep apnea to prove they can’t breathe adequately without an NIV.
A recent survey by the ALS Association found that one in three ALS patients with Medicare Advantage reported having a claim delayed or denied. Some had to appeal up to three times and wait six months before their claim was resolved. Still, in a third of cases, insurers ultimately denied their claim again.
Many people living with ALS, sensing an uphill battle, give up on appealing at all. Time is a precious, rapidly diminishing resource for any patient with a fatal illness — especially those with ALS. The mean survival time for this cruel disease is just two to five years after the diagnosis. Withholding care for six months during an appeals process can be tantamount to a straight denial.
In my work advocating for people living with ALS, I’ve seen firsthand the heart-breaking challenges they, their doctors, and caregivers face as they try to obtain care. One patient in St. Paul, Minn. named Tom was diagnosed with ALS in 2019 and prescribed an NIV after his first pulmonary test. To his and his doctor’s dismay, Tom’s Medicare Advantage insurer denied the NIV — without which Tom struggled to breathe and became lethargic. Just before Christmas, he was rushed to the ER with sky-high levels of carbon dioxide in his blood.
Thankfully, in January of 2020, Tom was able to move back to his original Medicare coverage, which ensured he had an NIV device when he was discharged. With the appropriate respiratory support, Tom was able to enjoy two more years of life with his family.
Insurers justify their actions by claiming they help contain healthcare costs. But a look at their bottom line suggests another motive — profit.
Insurers earned twice as much gross profit from Medicare Advantage plans as from other types of insurance. United alone posted profits of $14.4 billion in 2021, up 20% over the prior year.
Under federal law, Medicare Advantage plans must spend at least 85% of their revenue on care for patients. Insurers have proven adept at dodging these requirements. Past government audits have found that Medicare Advantage insurers overbilled the government and even submitted false claims to boost their profits.
When a doctor prescribes a ventilator for a patient, they are making a medical determination based on the patient’s condition and medical history. Studies have demonstrated that NIVs improve survival rates and provide better quality of life for ALS patients.
An insurer shouldn’t be able to override a doctor’s judgment of what’s medically necessary or appropriate for a patient just to line their pockets.
Regulators and legislators must insist that Medicare Advantage plans follow the law — and provide the care ALS patients and other beneficiaries are entitled to. No patient should have to fight for the right to breathe.
Calaneet Balas is president and CEO of The ALS Association.
