In 2014, The Ice Bucket Challenge became a viral sensation. Not only did it raise awareness for amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig’s disease, it also increased annual funding for the ALS Association by 187%. It’s encouraging that ALS research got a needed boost, but no matter what, people with the condition need access to affordable quality health care. That’s where Medicare comes in.

What Is Amyotrophic Lateral Sclerosis?

ALS is a progressive neurodegenerative disease that affects nerve cells in the brain and spinal cord. The condition can start out with muscle cramping, stiffness, twitching, or weakness. Eventually, it can progress to muscle atrophy, paralysis, or an inability to breath when the muscles needed for respiration are affected. Many people may need a ventilator to breath or a feeding tube since they are unable to feed themselves.

There is no definitive test to confirm someone has amyotrophic lateral sclerosis, and there is no cure for the disease. Current treatments may extend life by a few months but mainly hope to reduce symptoms and improve quality of life.

We are learning more about the condition every day. At this time, only 10% of cases are familial. The rest go unexplained. That said, multiple studies have shown that smoking could be a risk factor. What we do know is that people need access to care and their needs increase as the disease progresses.

Qualifying for Social Security Disability Insurance

Eligibility for Medicare does not happen when a doctor makes a diagnosis. Someone with ALS needs to apply for Social Security Disability Insurance (SSDI) first. Alternatively, they can seek disability benefits through the Railroad Retirement Board.

The problem is that applying for SSDI can take a long time. Social Security estimates three to five months to process an application! That’s why they have established a Compassionate Allowances List (see References below). Medical conditions on this list are considered more urgent and these applications are expedited. For obvious reasons, ALS is on the list. Once the SSDI application gets approved, Medicare eligibility kicks in.

Exceptions to the Rule

With an average three-to-five year life expectancy from the time of ALS diagnosis, there really is no time to wait. People need access to care as soon as possible. That’s why the traditional waiting periods for SSDI benefits and Medicare coverage are now waived for the condition.

SSDI Waiting Period: Normally, there is a 5-month waiting period from getting your SSDI application approved to receiving your first benefit payments. In December 2020, the government passed the ALS Disability Insurance Access Act of 2019 (ALS Act). With updates in March 2021, the law eliminated this 5-month waiting period for anyone confirmed to have the condition. Any SSDI application approved on or after July 23, 2020 no longer has to wait to collect benefits.

Medicare Waiting Period: Medicare eligibility for someone receiving SSDI usually starts on their 25th month of benefits. Social Security lifted this waiting period so that anyone confirmed to have ALS on or after July 1, 20221 can receive Medicare benefits starting the same month they receive their first SSDI payments.

 

Compassionate Allowances Complete List of Conditions. (2022). SSA.gov. https://www.ssa.gov/compassionateallowances/conditions.htm

EVALUATION OF THE ALS ASSOCIATION GRANT PROGRAMS Executive Summary Report. (2019). ALS Association. https://www.als.org/sites/default/files/2020-06/RTI-Report-FINAL.pdf

Removing the Waiting Period for Entitlement to Social Security Disability Insurance Benefits for Individuals With Amyotrophic Lateral Sclerosis. (2021). Federal Register. https://www.federalregister.gov/documents/2021/08/27/2021-18435/removing-the-waiting-period-for-entitlement-to-social-security-disability-insurance-benefits-for

SSA – POMS: DI 11036.001 – Amyotrophic Lateral Sclerosis (ALS) – Medicare Waiting Period Waived – Field Office (FO) – 05/04/2022. (2022). SSA.gov. https://secure.ssa.gov/poms.nsf/lnx/0411036001

Zhan, Y., & Fang, F. (2019). Smoking and amyotrophic lateral sclerosis: A mendelian randomization study. Annals of Neurology, 85(4), 482–484. https://doi.org/10.1002/ana.25443