Using the Power of Partnership to Save Money for People Living with ALS

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By Neil Thakur

Reducing the financial burdens of ALS is part of our commitment to making ALS a livable disease until we can cure it for everyone. We are working hard to mitigate the economic impacts of ALS in a variety of ways.

We advocate for better insurance coverage and more support from Medicare. We provide direct support through medical equipment, home modifications and grant programs to improve quality of life and provide scholarships for impacted families. We also help people with ALS navigate insurance and other benefits they may be eligible for.

Our care services teams often guide people through those processes directly, and we connect people living with ALS to others through support groups that offer informal advice on potential options for getting care paid for.

For complex financial or insurance issues, we sometimes turn to our partnership with the Patient Advocate Foundation (PAF). We pay them to support anyone anywhere in the country with ALS, including a special provision to ensure navigators from other ALS organizations can refer to them as well.

We've had this process in place for over two years, and we have some promising results to share. In 2022 the Patient Advocate Foundation served 290 people living with ALS, a 25% increase from the year before. The most common issues they helped with were related to cost of living such as utilities and rent, eligibility and enrollment into insurance, handling and disputing issues related to medical bills, and navigating complex insurance procedures.

The map below shows the number of cases handled by the PAF in 2022, with patchy utilization across the country. Often, our care services teams have the expertise to directly support an individual living with ALS on a particular issue and they do not need to refer them to another specialty organization. However, there is still room for higher usage of this service to provide more intensive support for people living with ALS and their families.

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When the Patient Advocate Foundation secures a service or a payment, for example enrollment in a copay assistance program or obtaining insurance coverage for a piece of equipment, they count the total cost of that assistance or that equipment as a benefit to the person with ALS. Here is a map showing the distribution of the $709,000 they reported recovered in 2022 by region, over a 150% increase from the year before.

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The amount recovered by region varies tremendously. In some cases, the Foundation was not able to recover significant resources for people, and in other cases it had a huge impact on one or two individuals.

Another part of our strategy to make ALS livable is to be more accountable─to be transparent about our operations, where we're doing well and where we have room for improvement. These maps show some pockets of success across the country we hope will inspire others to use this service as well. Our hope is by sharing this data we can have more uniform usage of this resource for everyone.

For more information about how to use the ALS Insurance and Benefits Resource Line through the PAF, visit our website here or go to als.pafcareline.org.

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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