Health Insurance, Cost of ALS Care Add to Disease Burden in US, Survey Finds

Health Insurance, Cost of ALS Care Add to Disease Burden in US, Survey Finds
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Accessing and understanding insurance coverage, and paying for medical treatments and services top the list of stressors that burden people with amyotrophic lateral sclerosis (ALS) in the United States, a survey of patients and caregivers reports.

Ten percent of its 444 respondents — in 1 in every 10 — reported losing their health insurance coverage after diagnosis, and 25% (1 in 4) reported either needing to borrow money or go into debt to afford care.

These findings come from the ALS Focus survey, conducted by the ALS Association and its partners over the spring months. It focused on “understanding the insurance needs and financial burden” of people with ALS.

Challenges identified in this online survey were those adding considerable stress to people living with ALS, and financial burdens such as increased debt. These issues demand attention across the ALS community, the association stated in a press release.

Results were drawn from responses submitted by 204 ALS patients, 118 current caregivers, and 122 former caregivers.

Nearly half of these people stated that trying to understand health insurance coverage in the U.S., and dealing with medical paperwork created substantial stress.

In addition to taking on debt or borrowing money, about 25% of patients or their caregivers reported needing to work longer than they had planned. Nearly half of this group said the need to keep their health insurance drove this work decision.

A majority (67%) of those reporting losing health insurance coverage after a diagnosis did so because they had to stop working either due to the disease or to care for someone with ALS.

Most respondents were in a mid- to high socioeconomic bracket, the ALS Association noted in its release. This suggests that the challenges of paying for healthcare could be even greater than what this survey captures.

ALS Focus surveys are done to “bring the perspectives of people with ALS and their caregivers to the forefront of research, care, and advocacy,” the association states.

It intends to use these data in working with pharmaceutical and insurance companies to bring about needed changes in the healthcare system.

Survey information is open and free to researchers, clinicians, and anyone who wants to learn more. All data has been de-identified and is protected by a global unique identifier (GUID) code. This allows survey results to be combined with other data sets to broaden their impact.

A “Summer 2020” ALS Focus survey, which opened on Aug. 14 and is ongoing, asks patients and their caregivers “what matters most” to them in terms of disease symptoms and how they affect daily life.

All responses are kept anonymous, and the association estimates it will take up to 15 minutes to complete this second survey. A one-time registration should take between five and 10 minutes.

More details, and a link to register for and participate in the Summer 2020 survey can be found here.

Forest Ray received his PhD in systems biology from Columbia University, where he developed tools to match drug side effects to other diseases. He has since worked as a journalist and science writer, covering topics from rare diseases to the intersection between environmental science and social justice. He currently lives in Long Beach, California.
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Ana holds a PhD in Immunology from the University of Lisbon and worked as a postdoctoral researcher at Instituto de Medicina Molecular (iMM) in Lisbon, Portugal. She graduated with a BSc in Genetics from the University of Newcastle and received a Masters in Biomolecular Archaeology from the University of Manchester, England. After leaving the lab to pursue a career in Science Communication, she served as the Director of Science Communication at iMM.
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Forest Ray received his PhD in systems biology from Columbia University, where he developed tools to match drug side effects to other diseases. He has since worked as a journalist and science writer, covering topics from rare diseases to the intersection between environmental science and social justice. He currently lives in Long Beach, California.
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