ALS is a neurodegenerative disease that affects nerve cells in the brain and spinal cord. The progressive degeneration of motor neurons in ALS eventually leads to paralysis or death.

It’s important to know what your insurance covers before you decide how you want to proceed with treatment, which can be expensive.

Discover more information on what your health insurance might cover for ALS treatments here!

The Needs of ALS

Amyotrophic Lateral Sclerosis (ALS), also known as Lou Gehrig’s Disease, affects the motor neurons in different parts of the brain and spinal cord. This can lead to muscle deterioration or paralysis that depends on where these cells were damaged first. ALS is treatable with medications such as Glutamate Antagonist or Neuroprotective drugs, which help preserve nerve cell function by reducing excitatory signals from reaching them.

Services are often needed for those who have been diagnosed with this disease because they may require a lot of breathing care, physical therapy, speech therapy; even medication for their condition will be required, so it would behoove you to learn more about what your loved one might need

Someone with ALS may need mobility equipment such as a cane or a wheelchair. Most health insurance providers cover mobility equipment because of their medical use. Check with your provider for specific questions on coverages for ALS treatment and equipment.

Insurance Options 

It is hard to know which health care option is best for you or your loved one with ALS. With your insurance coverage and plans, you have different options:

  • Medicare
  • Medicaid
  • Private Insurance

Let us go through each option to see best for your loved one.


Most people with ALS qualify for federal aid such as Medicare, Social Security, and Disability Insurance. If you or a loved one qualifies for Medicare, most of the medical expenses for ALS should be covered, regardless of age. Approval for Social Security can provide a steady monthly income if you or your loved one are no longer working due to ALS. If the diagnosed person worked for ten years or more and pay taxes, they should qualify for benefits. Some factors that affect eligibility include: 

  • when the person last worked
  • how much they worked (within the past ten years)
  • the age of the diagnosis

Ensure you or your loved one has this information when applying for Medicare and Social Security.

The standard waiting period for benefits is usually around 24 months but has dropped to five months for ALS patients. In December of 2020, a law waived the waiting period for new applicants with ALS. In March of 2021, a follow-up bill from the 2020 law now allows ALS patients to be put on a fast-track list for benefits approval. Applicants with ALS can go through the acceptance process within just a few weeks.

Some monthly premiums can still apply, such as deductibles and co-pays. These are paid out-of-pocket. Medicare covers about 80% of services and equipment. Medicaid also protects you because it will cover the other 20% of costs.


Since Medicaid is a state-run medical insurance program, eligibility for benefits will vary state by state. 

In some states, all adults below a defined income level qualify for Medicaid. Other state’s eligibility requirements may include household size, disability, and age. And some states also consider retirement plans such as 401 (k) holdings during the acceptance process. Each state varies on income requirements and eligibility; check your state’s income requirements before applying for benefits. 

If you are approved for Medicaid and make it above the income threshold, you will pay the difference out-of-pocket before Medicaid covers any medical expenses. For example: if you make $50,000, and the Medicaid threshold is $40,000 and have medical expenses of $15,000, Medicaid will only cover $5,000 of costs. Medicaid will only cover this amount because you exceed the income threshold by $10,000. The amount paid out-of-pocket of the remaining medical expenses not covered by Medicaid shows you can afford the difference since you exceed the Medicaid income threshold. 

 If you are approved for Medicaid, it can help you save money with medical costs. These medical costs include deductibles and other charges you may need to pay out-of-pocket. Each state is different when determining Medicaid eligibility. This means fees will not be covered and must be paid out of pocket. If you do not have Medicare or qualified for Medicare, Medicaid will act as your primary health insurance. Always check your state’s coverage plans to plan for specific ALS medical costs.

Private Insurance

If you leave your job due to ALS, you might lose your employer-based coverage. If this happens to you or your loved one, you can apply for Medicare or Medicaid. If you stay with a private insurance provider but lost your private insurance due to job loss, Medicare or Medicaid can offer some leeway until you can change back to your choice of private insurance. When the Affordable Care Act was passed in 2010, those with preexisting conditions, such as ALS, may no longer be excluded from health care coverage.

Things to consider when choosing a private insurance plan include:

  • Premiums
  • Deductibles
  • Benefits (Rates, Equipment, Etc.)
  • Co-Pays
  • Out of Pocket Maximums
  • HMO or PPO options
  • Care Network 

ALS is a difficult diagnosis, but it need not be. I hope this helped you determine the best health care options for someone diagnosed with ALS. Planning for the future is key to the patient’s quality of life. If you have questions about your current policy or want to see what other coverage options you have with True Coverage, click the link below. 


Photo by SHVETS production from Pexels

Private Health Insurance Options For People With ALS –  Your ALS Guide

The ALS Association

Does Medicare Cover ALS Care? | Medicare & Medicare Advantage Info, Help and Enrollment

Health Insurance, Cost of ALS Care Add to Disease Burden in US, Survey Finds (

Amyotrophic lateral sclerosis (ALS) – Symptoms and causes – Mayo Clinic

Products for People with ALS (Lou Gehrig’s Disease) | Ochsner Health

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