Can my spouse, who was diagnosed with ALS but isn’t 65 yet, get Medicare?

Yes. Because amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig’s disease, is progressive and has no known cure, people who are diagnosed can receive Medicare before age 65.

It is one of two conditions for which Medicare coverage is allowed the first month a person is awarded Social Security or Railroad Retirement Board disability benefits. The other condition is permanent kidney failure, also called end-stage renal disease (ESRD). With other disabilities, beneficiaries younger than 65 have to receive Social Security Disability Insurance (SSDI) payments for 24 months before qualifying for Medicare.

First, your spouse, or you as his representative, need to apply for SSDI. Because ALS, which affects the nerve cells in the brain and spinal cord, causes muscle weakness that can worsen quickly, Congress passed legislation in July 2001 that eliminated the 24-month waiting period for Medicare. Then with the ALS Disability Insurance Access Act of 2019, lawmakers eliminated the five-month waiting period that other applicants approved for SSDI benefits must face before receiving a check.

The mean survival time for people diagnosed with ALS is two to five years, though some people live with ALS a decade or longer and physicist Stephen Hawking lived with the disease for 55 years. About 5,000 people are diagnosed in the U.S. each year, and about 15,000 are estimated to be living with ALS.

Many SSDI applications can take a while to get through the claims and appeals process, but the Social Security Administration says its online application process has resulted in approval for ALS patients in as little as two days. One way to ensure speedy approval is by providing ample medical records to back up the diagnosis and any other documentation the federal agency requires.

After starting disability benefits, your spouse with ALS will be enrolled automatically in Medicare. From there, just like Medicare beneficiaries who are age 65 or older, your mate will need to make the same decisions about original Medicare, a Medigap Medicare supplement policy and a Part D prescription drug plan vs. Medicare Advantage.  

Keep in mind

• Receiving Medicare is tied to qualifying for SSDI. If a person with ALS doesn’t have enough Social Security work credits to qualify alone, not through a spouse’s earnings history, then the patient cannot receive Medicare benefits.
  
  However, a younger person who becomes disabled requires fewer work credits for SSDI eligibility, as few as six in the three years before the ALS diagnosis if younger than 24. A person 62 and older must have 40 credits, the equivalent of 10 years of work.

• Even though you can buy a Medigap policy within six months of signing up for Medicare Part B at age 65, regardless of preexisting conditions, rules for younger people vary by state. These plans can help pay out-of-pocket costs for parts A and B of original Medicare.
  
  Some states don’t have guaranteed issue rights for Medigap if a Medicare beneficiary is younger than 65, which makes it difficult to qualify for coverage with a preexisting condition such as ALS. Contact the State Health Insurance Assistance Program (SHIP) in your area to learn more about your state’s rules. Representatives there also can help with Medicare enrollment and coverage questions.

Updated May 27, 2022

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