ALS and Medicare

Many people diagnosed with amyotrophic lateral sclerosis — also known as ALS or Lou Gehrig’s disease — can qualify for Medicare regardless of age.

To enroll in Medicare, you must first be approved for Social Security Disability Insurance, or SSDI. Qualifying for SSDI depends on your work history.

You typically qualify for disability benefits when you’ve worked at least five of the last 10 years and have paid taxes for a total of 10 years or more.

You are automatically enrolled in Medicare as soon as you start to receive disability benefits.

Most SSDI applicants must undergo a five-month waiting period before benefits begin.

However, in December 2020, a new law exempted ALS patients from this waiting period, so your disability benefits should begin shortly after your application is approved.

You will likely need home health care services as your ALS condition progresses.

Medicare coverage includes several at-home benefits at no cost for those who qualify.

Typically, a home health care agency coordinates the services your doctor orders for you.

Medicare covers intermittent skilled nursing care — not around-the-clock care.

This means the services you receive must be provided fewer than seven days a week. You may also receive daily care as long as it doesn’t exceed eight hours each day for up to 21 days.

You pay nothing for home health care services so long as you meet eligibility criteria and your services are provided by a Medicare-approved home health agency.

You also won’t owe anything for home health care if you’re enrolled in a Medicare Advantage plan.

You can use the online Home Health Compare tool to find Medicare-certified home health agencies in your area. The tool provides information about the types of services each agency offers, as well as details about the quality of care they provide.

Durable medical equipment, or DME, are items you can use at home to improve your quality of life and extend your independence.

Medicare covers numerous types of DME. The items you need, and when you need them, will depend on your ALS symptoms and progression.

Medicare pays 80 percent of the approved cost for each item. You are responsible for the remaining 20 percent.

You may owe less if you have supplement insurance, such as Medicaid or a Medigap policy.

Medicare covers DME only if you get it from a supplier enrolled in Medicare.

To receive your DME, a multistep process must be followed.

If you have trouble paying for DME, many local ALS nonprofits and clinics offer equipment for free through loan programs.

If they have them on hand, these organizations can lend small items, such as pivot discs, as well as larger items, including motorized wheelchairs for as long as you need them.

You can find your local ALS Association chapter by using this online tool.

ALS is a progressive neurological disease that destroys motor neurons. It causes people to lose control of their limbs, their speech and, ultimately, their ability to breathe.

There is no cure for ALS and no effective treatment to halt symptoms.

ALS symptoms can vary from person to person, depending on which neurons are affected.

Doctors usually don’t know why ALS occurs. It’s estimated that about 10 percent of ALS cases are inherited. According to the ALS Association, someone is diagnosed on average every 90 minutes.

The risk of developing ALS increases with age. According to Mayo Clinic, the disease is most common for people between the ages of 40 and the mid-60s.

Treatments can’t reverse ALS, but they can slow the progression of symptoms and prevent complications.

Your doctor may prescribe certain medications — such as Rilutek (riluzole) or Radicava (edaravone) to slow the progression of ALS. Doctors can also prescribe medications to manage symptoms of ALS, including muscle cramps, stiffness and excess saliva.

You may require a brace, walker or wheelchair. Eventually, you may need assistance breathing with either noninvasive ventilation or mechanical ventilation.

You may also benefit from physical, occupational and speech therapy to maintain your muscle strength, range of motion and ability to communicate for as long as possible.