ALS Association tool aims to help patients navigate insurance issues
Free resource guides patients in building appeal case for insurance denials
The ALS Association has launched a free resource to help people with amyotrophic lateral sclerosis (ALS) and their families navigate health insurance denials and appeals — with the tool’s goal to help patients get coverage for critical care.
Dubbed the ALS Insurance Navigator, the tool delivers detailed guidance on how to interpret denial letters and tips for building an appeal case, including letter templates and timelines.
“While frustrating, knowing what steps to take to manage insurance denials can make the [appeal] process a bit easier,” the tool’s webpage says. “Health care coverage denials and appeals are integral parts of the health insurance process.”
Insurance denials occur when the insurance company refuses to pay for the specialized medical care requested by a patient’s healthcare team. This includes medications, medical equipment, and specialist care — all of which, the nonprofit notes, are critical for optimally managing ALS and improving the quality of life of patients and their families.
“Unfortunately, we’re hearing anecdotally that these challenges are becoming more common,” Melanie Lendnal, senior vice president of public policy and advocacy at the ALS Association, said in a press release from the nonprofit. “This is something we’ve been seeing more frequently.”
ALS Association says insurance denials affect life quality, survival
Denials of medical claims are estimated to impact about one-third of people with the progressive neurological disease, according to the findings of an ALS Focus survey done in 2022. These denials brings stress and financial strain to families, and can prevent patients from receiving critical care when it’s needed the most.
Research from the Kaiser Family Foundation has shown that 80% of Medicare medication coverage denials that are challenged are ultimately reversed. Still, only 10% of these insurance denials are contested.
When insurance companies deny a claim, they send a letter to the patient and healthcare provider explaining the reasons for the denial. This can happen for a number of reasons, including the company deeming the treatment unnecessary or not supported by medical evidence, errors in medical codes identifying the service, the care being given by an out-of-network provider, and policy exclusions.
“These denials can have serious consequences on both quality of life and survival,” Lendnal said.
The Insurance Navigator tool includes a number of resources and tips for filing both internal and external appeals. Internal appeals are those made within the health insurance company, in which patients request the company review its decision. Such appeals may involve submitting new information, such as medical records or a physician’s letter supporting the claim.
If the company accepts, it may reverse the decision. If the decision is negative, however, patients may opt for an external appeal — where an external independent panel of experts reviews the claim and makes a final determination.
Ultimately, if the external appeal is denied, patients on medicare plans can have their case reviewed in an administrative law or appeals council hearing. For other types of insurance, the request may be directed to different entities, and the tool includes instructions on how to proceed in any given case.
Insurance Navigator cites 4 key words needed to help win on appeal
To improve a patient’s chances of winning on appeal, the ALS Association says the key is “the ‘four’ words.”
“Medically Necessary, Safe. Effective. Reasonable. When appealing a denial, utilizing these four words will provide the best chance of success,” the webpage states. “This is how insurers make determinations regarding coverage. So, speaking their language is important.”
The appeals journey isn’t as daunting as it seems when you have the right support. I fought for months to get the treatment I needed, and without the ALS Association’s guidance, I wouldn’t have known where to turn. … Don’t let the process wear you down.
The ALS Insurance Navigator provides a step-by-step guide with form templates, supporting documentation resources, and clinical guidelines that patients can gather to strengthen their appeal. It also has tips on how to write a letter of appeal and submit and manage the process.
“The appeals journey isn’t as daunting as it seems when you have the right support. I fought for months to get the treatment I needed, and without the ALS Association’s guidance, I wouldn’t have known where to turn,” said Chris Spaulding, an ALS advocate living with the disease
Additionally, the new tool also connects patients and their families to other resources, including care services from the association and the ALS Insurance and Benefits Resource Line. That direct telephone access tool, developed in collaboration with the Patient Advocate Foundation, provides direct, free phone access to insurance and benefits experts who help patients navigate disability benefits and insurance coverage.
“Don’t let the process wear you down,” Spaulding said.
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