Medicare open enrollment begins Sunday, October 15, the annual period when individuals may add, drop, or make changes to their health insurance coverage, with selections remaining in effect for the next full year. After the open enrollment window closes on December 7, plan changes can only be made after a qualifying life event.

Because of the work of ALS advocates, people living with ALS who received Social Security Disability Insurance (SSDI) are eligible for Medicare, regardless of their age. However, Medicare is not a one-size-fits-all program, and people with ALS still must decipher the various Medicare plan options to determine what fits best with their needs.

Data from our ALS Focus survey program has shown navigating the health insurance system can add to an already stressful diagnosis: half of respondents said understanding medical insurance coverage and dealing with medical paperwork substantially impacted their stress level.

Our local care services teams work in communities across the country to help people with ALS navigate insurance and other benefits they may be eligible for, often guiding people through those processes directly, and connecting people living with ALS to others through support groups that offer informal advice on potential options for getting care paid for.

For more complex financial or insurance issues, we’ve partnered with the Patient Advocate Foundation (PAF) to provide The ALS Insurance and Benefits Resource Line, a resource designed to provide individualized case management assistance for people living with ALS, their family members and caregivers.

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The Line provides free, direct telephone access to insurance and benefits experts who can help with navigating eligibility and enrollment in disability benefits and overcoming insurance coverage and financial burdens that impact access to care.

The most common issues the Patient Advocate Foundation helped with were related to cost of living such as help with utilities and rent, eligibility and enrollment into insurance, handling and disputing issues related to medical bills, and navigating complex insurance procedures.

The Resource Line has proven to be of great benefit to the ALS community, with use increasing 25 percent last year, saving people with ALS over $700,000 in 2022 alone –a 150 percent increase from the previous year.

“The fact that you even exist as an organization means so much to me,” said Kathryn Allen, who has utilized PAF services. “I have never dealt with a life altering disease before, so all of this is new to me. To not only have this overwhelming disease but also have to be my own advocate, organizations like yours make me feel like I'm not alone. Thank you!”

Reducing the financial harms of ALS is a key component to making ALS a livable disease until we find a cure. You can access The ALS Insurance and Benefits Resource Line by calling 1-844-244-1306, or complete a request for help form.

To better understand insurance and benefits when you have ALS, visit our website HERE.

To learn more about the disease and follow stories about people living with ALS in the community, subscribe to receive our weekly blogs in your inbox HERE or follow us at als.org/blog.

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