ALS and Medicare: What You Need to Know

Amyotrophic Lateral Sclerosis and Medicare

If you’re diagnosed with ALS, your Medicare coverage begins the same month as your SSDI benefits.

Amyotrophic lateral sclerosis (ALS), sometimes called Lou Gehrig’s disease, is a progressive condition that affects nerve cells in the brain and spinal cord, eventually leading to the loss of muscle control. Unfortunately, there is no cure (yet) for this fatal disease.

It’s estimated that ALS affects about four out of every 100,000 people in the U.S. On average, 5,000 new patients are diagnosed yearly with ALS.

ALS is more common in men than women – especially for those diagnosed earlier in life. However, most people with ALS are diagnosed between 55 and 75 years old.

There is no known cause for the disease. About 5 to 10% of ALS cases occur within families.

Symptoms and diagnosis of ALS

ALS often starts with muscle twitches and weakness in the hands, feet, or limbs. Another early symptom is slurred speech.

Other symptoms of ALS might include the following:

  • Difficulty walking
  • Weakness
  • Clumsiness
  • Slurred speech or trouble swallowing
  • Muscle cramps and twitching in arms, shoulders, and tongue
  • Inappropriate crying, laughing, or yawning
  • Cognitive and behavioral changes

Typically, muscle weakness spreads and worsens as the disease progresses. It eventually affects a person’s ability to speak, chew, swallow, and breathe.

Unfortunately, like other neurological diseases, ALS is difficult to diagnose. Primary care physicians may run tests – including an EMG, MRI, spinal tap, muscle biopsy, or nerve conduction study – to rule out other diseases or causes of the symptoms.

ALS and Medicare eligibility

Those diagnosed with ALS are immediately eligible for Medicare – even if they aren’t 65. The medical care costs for someone with ALS can be staggering, so Medicare is open for younger people who have the disease.

If you or someone you love recently received an ALS diagnosis, start the Medicare enrollment process immediately.

Before enrolling in Medicare, a person with ALS must first qualify for Social Security Disability Insurance (SSDI). (It’s worth noting that the SSDI waiting period is waived for people diagnosed with ALS.) We walk you through applying for SSDI here.

If you have ALS, you will be automatically enrolled in Medicare Parts A and B the first month your benefits begin. But you still have an Initial Enrollment Period (IEP), which lasts for seven months – just as it does if you age into the program.

Compare Medicare plans that cover ALS

During your IEP, you can choose your Medicare plan. You’ll almost definitely want prescription drug coverage (Medicare Part D), since you face lifelong late enrollment penalties if you go more than two months without “creditable” drug coverage (meaning it compares to Medicare in terms of both coverage and cost). And, of course, to cover most of the cost of your prescribed medications.

This is also when you can choose a Medicare Advantage or Medigap plan. You may find it easier to find the right coverage for your unique needs if you work with a licensed agent. This is especially true if you want to join a Special Needs Plan (SNP). With an SNP, all of the benefits – including specialists and prescription medications – are geared toward people who have the same condition, such as ALS, diabetes, or heart failure.

You can also review plans on your own (our Find a Plan tool makes it easy). Your Medicare policy should pay for home health providers, adaptive equipment, and durable medical equipment. Price is important, but you should look beyond the monthly premium to see just what you’re getting.

ALS Care Covered by Medicare

While there is currently no cure for ALS, there are treatments available that help reduce and slow the progression of symptoms and reduce the risk of possible complications. In addition, assistive devices and services help make life for a patient with ALS more comfortable.

Here’s how the different parts of Medicare help pay for ALS care.

Medicare Part A

Original Medicare Part A (hospital insurance) covers inpatient hospital care and surgeries, skilled nursing facility care, hospice, and specific home health care services.

Specific requirements must be met for Medicare Part A to cover post-hospital care in skilled nursing facilities.

We walk you through Part A here.

Medicare Part B

Original Medicare Part B (medical insurance) coverage includes the services of healthcare providers, outpatient care, home health care services, and durable medical equipment.

Patients with ALS who need home health services must meet all the requirements before the care cost can be covered by Medicare Part B. Such requirements may include the following:

  • The patient must be under the care of a physician they regularly visit.
  • The healthcare provider must create a care plan for the patient with ALS, which establishes the regular services that a patient receives. The healthcare provider must review the plan every 90 days.
  • The ALS patient must be homebound.
  • Homebound nursing care or therapy must be medically necessary.

If the patient with ALS meets the requirements, Medicare Part B may cover the following in-home therapies:

Skilled nursing care: Medicare Part B may cover intermittent skilled nursing care from a Medicare-approved provider for 21 days or less.

Physical therapy: A physical therapist can help a patient with ALS maintain muscle strength, range of motion, and cardiovascular fitness.

A physical therapist can also help the patient adjust to a brace, walker, or wheelchair, and might suggest other devices and techniques to make it easier to move throughout the home.

Occupational therapy: An occupational therapist can help find ways for the patient to remain independent for as long as possible. For example, they may suggest adaptive equipment to help the patient perform activities such as dressing, grooming, eating, and bathing.

Speech therapy: A speech therapist helps a patient with ALS maintain communication for as long as possible. They may also suggest technologies such as text-to-speech applications, eye-tracking technology, or computer-based equipment with synthesized speech to help the patient communicate.

Breathing care: As an ALS patient’s muscles weaken, they’ll eventually have more difficulty breathing. A healthcare provider may suggest noninvasive ventilation treatment to boost normal breathing. Eventually, the patient with ALS may choose mechanical ventilation.

Nutritional support: A patient with ALS may need assistance choosing foods that are easy to swallow. Eventually, they may need a feeding tube.

Emotional support: Psychologists or social workers may provide in-home emotional support for the patient and the family.

Durable medical equipment: Finally, Medicare Part B may help pay for ankle foot orthosis (AFO) braces, a wheelchair, or other durable medical equipment needed for in-home care.

Medicare Part D

A Medicare Part D policy covers prescription drugs. Therefore, it’s vital that you choose a plan that covers your specific medication and future medications.

Common ALS medications include Riluzole (Rilutek, Exservan, Tiglutik kit); Edaravone (Radicava); and sodium phenylbutyrate (Relyvrio). Your physician might also prescribe other medications to relieve muscle cramps, constipation, fatigue, excessive saliva and phlegm, and pain.

ALS patients are also often treated for depression, sleep problems, and uncontrolled outbursts.

When comparing Part D plans (whether a standalone plan or a Medicare Advantage Prescription Drug plan), always check the drug formulary to make sure it covers your prescriptions. If it doesn’t, it’s not the right plan for you.

For help understanding your Medicare options, call us toll-free at 888-992-0738. We’ll answer your Medicare questions in easy-to-understand, jargon-free language.

Additional resources

After retiring from a career as an executive travel counselor in 2006, Donna Frederick embarked on a second career as a licensed insurance agent. During that first year, many clients told Donna how overwhelmed they felt by Medicare, but that her assistance helped them finally understand the Medicare program. That experience inspired Donna to focus her efforts on educating her clients to ensure they fully understand their Medicare options. Today, Donna takes pride in providing outstanding customer service and going the extra mile to make sure each client knows all of their options and has a sound understanding of their Medicare plan, from costs to coverage and all points in between.


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