ALS Patients Now qualify for Fast-Tracked Medicare, SSDI Benefits

People diagnosed with Lou Gehrig’s disease (also known as amyotrophic lateral sclerosis, or ALS) now get faster access to Medicare. In December 2020, the ALS Disability Insurance Access Act of 2019 became federal law. Doctors diagnose about 5,000 new ALS cases in the United States every year, and the disease has no known cure.

New Law Eliminates Waiting Period for Social Security Disability

Every year, about 1,000 people diagnosed with ALS apply for Social Security disability insurance (SSDI) benefits. Most have no idea how the complicated federal disability program works. Until this year, federal law required all approved SSDI claimants to undergo a five-month waiting period for their first payment. Even people whose claims qualify for fast-tracking under the Social Security Administration’s Compassionate Allowances (CAL) initiative couldn’t skip this mandatory five-month waiting period.

But thanks to the new law, people with ALS approved for monthly SSDI can skip the five-month wait. Because ALS is also a CAL condition, the SSA expedites those claims for benefit approval within 30 days, on average. Since the current average wait time for disability benefits nationwide is 418 days, that’s a huge benefit for ALS patients. But the law provides another crucial benefit for people with ALS: Rapid access to Medicare, regardless of the patient’s age.

How ALS Patients Can Access Medicare Faster

You don’t have to be 65 to qualify for Medicare after your ALS diagnosis. All you need to do to get access to quality, low-cost healthcare Medicare provides is apply for SSDI. Once approved, your Medicare coverage automatically begins upon receipt of your first SSDI payment. Normally, disabled claimants must receive SSDI for 24 months before they’re eligible to enroll in Medicare. Thanks to the new law, ALS patients on SSDI can access Medicare benefits in 60 days or less.

Here are the steps ALS patients should follow to get rapid-access Medicare coverage:

1. Apply for SSDI. In the “remarks” section of your application, write “my claim qualifies for expedited review under the CAL initiative. My doctor diagnosed me with Lou Gehrig’s disease on (date).” If someone else (such as a Social Security agent or attorney) helps you apply, inform that person you have ALS.
2. Expect your first SSDI payment the following month. If you apply for SSDI in June, for example, you should receive your first payment in July.
3. The SSA automatically enrolls you in original Medicare (Parts A and B) the same month your SSDI payments begin. You don’t have to do anything else and should receive your Medicare card in the mail during that same month.
4. If your Medicare card doesn’t arrive as expected, call 1–800-Medicare to speak to a representative. That person can answer any questions you have about coverage, track down your missing card and issue a new one, if needed.