The Cost of This Disease

When I was first diagnosed with ALS, I was so overwhelmed by the physical changes and mental stress that I didn’t really think about the financial burden. In fact, because I was told there was no treatment, I assumed the costs wouldn’t be that high—no expensive therapies like chemotherapy, right?

How wrong I was!

The annual cost of ALS care, without insurance, can range from $100,000 to over $200,000. These costs include durable medical equipment, caregiving, transportation, home modifications, and more. Even with Medicare, an ALS Association–led study estimates the average cost at around $47,450 in the first year after diagnosis. That’s still a significant burden.

Health Insurance: Where to Start

The first and most essential step is securing healthcare coverage. There may be several options available:

1. Medicare

To qualify for Medicare (if you are under 65), you must first apply for Social Security Disability Insurance (SSDI). You can apply through the Social Security website. The process can be long and complicated, but if approved, you typically qualify for Medicare Parts A and B.

• Part A: Usually no monthly premium

• Part B: Requires a monthly premium, which can be costly

Even with Parts A and B, you will likely need supplemental insurance, as Medicare alone often does not provide adequate coverage. This adds additional expense.

Important note: Many ALS clinics do not accept Medicare Advantage plans, and these plans may not provide sufficient coverage for ALS care. It’s worth researching carefully before choosing one.

2. Coverage Through a Spouse or Partner

You may be able to access insurance through a spouse or partner’s employer. However, depending on the plan and employer, premiums may increase significantly after an ALS diagnosis, or coverage options may be limited.

3. Private Health Insurance

You can explore plans through the Health Insurance Marketplace (HealthCare.gov). This may provide options depending on your income and eligibility.

4. Employer-Sponsored Benefits

If you were working at the time of diagnosis, you may qualify for long-term disability benefits. This was my situation—I applied and was approved.

Because I receive long-term disability through my employer, I am still eligible for their health benefits. However, this varies widely by employer and plan. It’s critical to fully understand your company’s policies and benefits.

Out-of-Pocket Costs

Even with insurance, ALS comes with substantial out-of-pocket expenses, including:

• Transportation (e.g., wheelchair-accessible van)

• Home modifications (ramps, roll-in showers, grab bars)

• Equipment (walkers, wheelchairs, communication devices)

Tips and Resources to Help Manage Costs

Transportation

A wheelchair-accessible van can cost upwards of $100,000—and it’s typically not covered by insurance.

Some alternatives:

• Look for used vans

• Check with local charities for donated vehicles

• Browse platforms like Facebook Marketplace

• Contact your local ALS Association chapter—they may know of available options

The best advice here: start looking early and be patient. A good used option may take time to find.

Equipment

There are ways to reduce costs for medical equipment:

• Amazon: For things like canes, walkers, wheelchairs, adaptive shoes and clothes. Amazon often has a wide price range, including used items. It’s usually my first stop, and returns are relatively easy.

• Local medical supply stores: May offer used or rental equipment

• ALS Association: Many chapters have loaner closets, donated equipment, or grants

• Other organizations:

  • Compassionate Care ALS (ccals.org)

  • I Am ALS (iamals.org)

  • Team Gleason (teamgleason.org)

Home Modifications

These can be expensive and are rarely covered by insurance.

Some options to explore:

• Local charitable organizations such as Habitat for Humanity

• ALS Association chapters

• MS organizations

They may be able to recommend contractors who offer discounted rates for ADA-compliant modifications.

Final Thoughts

Even with insurance, ALS brings a heavy financial burden that many of us don’t anticipate at the start. The best thing you can do is begin planning early, explore every available resource, and ask for help wherever possible.

I wish I had better answers—or easier solutions—but the reality is that managing the cost of ALS takes persistence, creativity, and support.