Breaking Barriers: The fight to make health care affordable and accessible

Health insurance companies can play a critical role in making ALS livable for everyone, everywhere, but barriers are often put in place that prevent people from accessing the health care services they need.

One of the most common ways public and private insurers make it difficult to access essential health care is through the use of pre-authorisations, a process health insurers use to control costs. While many insurance companies use advance authorization to some degree, Medicare Advantage plans have been criticized for using them excessively to the detriment of people living with ALS.

Pre-authorization requests must be submitted by a healthcare provider who must document why a particular drug, treatment, or piece of medical equipment is needed. Providers are often frustrated that submitting pre-authorization requests takes a long time – especially when they must be done for every patient. While the provider has direct contact with the patient, the person making the decision for the insurance company may have very limited experience or make the decision based on the “average patient.”

In addition, the insurance company may require the patient to try a medication or use a piece of equipment that is less effective and “fail first” before giving consent for the physician-prescribed care. When care is refused, there are multiple layers of internal and external appeals that can be made – each time consuming and with its own challenges.

According to a recent ALS Focus survey, nearly one in three respondents reported that care prescribed by a physician was delayed or denied as a result of prior authorization requests. This refusal was often related to medication, mobility devices with necessary accessories, or home care services.

Often the burden of making an appeal falls primarily on the patient and his or her family. While the provider must continue to provide medical information, the person living with ALS must confront the insurance company to underwrite the care that the provider has specified. In the Focus survey, people with ALS indicated that they often do not attempt an appeal.

Participants who appealed indicated that they often had to appeal up to three times and wait up to six months for a final resolution. After the appeals process, nearly a third of previous licenses and claims were denied or only partially granted, resulting in some people living with ALS having to pay out of pocket or not receive the care or service they need.

The results of this survey also show the heavy burden that denial of a primary care setting for ALS places on people with ALS. Many participants noted that jumping through the hoops of these processes, even if it ultimately leads to consent, places additional pressure on individuals and families who are already dealing with too much.

We are committed to ensuring that our community receives the timely, hassle-free care they need. Earlier this year, we filed a formal objection with health insurance company CIGNA to the company’s decision to remove Relyvrio from its formulary as part of the ongoing fight for access to approved therapies. We shared the letter with the Centers for Medicare, Medicaid Services, the Veterans Administration, and state insurance commissioners.

Barriers to access to durable medical equipment extend, too.

One in four respondents to another recent ALS Focus survey said they had to pay out of pocket for the cost of their electric wheelchair, with 47 percent saying their insurance company refused to pay for their electric wheelchair seat. Moreover, fifty percent of the respondents said they had to pay out of pocket for the portable ramp or roller as well.

Recently, the ALS community scored a big win when Medicare added electric seat lift systems in electric wheelchairs as a benefit for individuals with disabilities including people living with ALS, deeming the technology to be medically necessary.

Unfortunately, we also know that people with ALS are increasingly being denied non-invasive ventilator use by Medicare Advantage plans. It’s a heart-wrenching truth that adds another layer of agony to an already devastating journey.

This is often done through a process known as stepwise therapy, or fail-first, a process that requires patients to try one or more medications prescribed by the insurance company, usually a generic or less expensive drug. Patients must then fail to take the drug before being allowed to “progression” to another drug that may be more expensive for the insurance company.

In the case of non-invasive ventilators, this could mean that insurance companies force someone living with ALS to try a low-cost ventilator and prove that it doesn’t work before they get access to the equipment they really need.

It is extremely important for insurance companies to realize that non-invasive respirators are not a luxury, but a lifeline for ALS patients.

Physicians caring for people with ALS are in the best position to determine the course of care and type of ventilator needed, not to mandate insurance companies and staff to use it. People with ALS deserve the full benefit of a doctor’s experience and expertise, especially when it focuses on supporting their ability to breathe.

We recently joined with the American College of Chest Physicians (CHEST) to challenge United Healthcare’s practice of delaying and denying medically necessary non-invasive ventilators to patients with ALS, while notifying insurance regulators of the practice.

This month, we’ll be highlighting some of the ways insurers are restricting access to basic health care needs and ways the ALS community can fight for better coverage policies that make ALS livable as we continue to search for a cure.

To learn more about Medicare and to better understand its insurance and benefits for people living with ALS, visit our website here.

To continue following the stories of people living with ALS in the community and learn more about the disease, sign up to receive our weekly blogs in your inbox. here Or follow us on als.org/blog.

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