Brian Frederick, PhD, discusses how the short life expectancy after diagnosis leads many patients with ALS to lose their lives before receiving disability benefits.
Patients with amyotrophic lateral sclerosis (ALS) will no longer have to observe the 5-month waiting period to receive benefits from the Social Security Disability Insurance Program (SSDI) once the new law, signed by former President Trump in December 2020, becomes implemented by the Social Security Administration.1
The SSDI waiting period was originally implemented that only people with long term disabilities received benefits, but new disability rules stipulate that people have a condition that will keep them out of work for at least a year or result in death, rendering the waiting period redundant.2 Previous efforts have been made to eliminate the 5-month waiting period completely, but none have succeeded.3,4
NeurologyLive reached out to Brian Frederick, PhD, executive vice president, communications, and head, creative, ALS Association, to learn more about how the ALS Association partnered with other groups to lobby for the end of this act. He stressed the impact that the new law will have on patients with ALS.
Brian Frederick, PhD: They gain immediate access to Medicare once they become eligible for SSDI.
ALS is a disease that forces people to stop working and lose both their income and health insurance. This loss occurs at the same time that people with ALS and their families are most vulnerable and must face a terrible disease with astronomical medical expenses. Most people who have worked are eligible for SSDI. But the application process can be very long. Even once someone is declared eligible for SSDI, they must wait 2 years before they can be covered under Medicare.
The new law, effective on December 23, 2020, now ensures that anyone with ALS who is eligible for SSDI will receive Medicare immediately. We believe that anyone with ALS who applied for SSDI in the past 5 months should benefit from this new law.
The ALS Association was instrumental in getting ALS covered under the Social Security Administration’s Compassionate Access program so that applications are expedited for approval in a matter of weeks. Critically important, in 2020, The ALS Association also won Congressional passage of a bipartisan bill that waived a 2-year waiting period for Medicare for people with ALS who receive SSDI.
As we understand, Congress established the SSDI program with a 2-year waiting period so that the Social Security Administration could determine who might have a temporary disability and who might have a permanent disability. But ALS has no cure, and people with ALS can rapidly lose their ability to function. So for ALS, and conditions like it, the waiting period serves no purpose.
The ALS Association is working with the ALS community and Congress to address any current or proposed federal law, regulation or policy that negatively impacts people living with ALS.
Federal research funding for ALS must increase across the board. With increased federal research funds, we can dramatically multiply the number of clinical trials on potential ALS treatments, speed progress toward slowing symptom progression, reduce the number of new cases and increase the length and quality of life for every American suffering from ALS.
FDA must move faster and be more innovative in their approval of new drugs. We must eliminate any restrictive Medicare policy that make it harder for people with ALS to access complex wheelchairs, ventilators or speech generating devices. Federal laws must ensure people living with ALS receive the treatment services needed, gain access to new drugs, and are not discriminated against. Equally important, Medicare and VA and other public and private insurance must provide full coverage for new treatment and drugs.
Transcript edited for clarity.