ALS Association to CMS Administrator: We Urge You to Listen to People Living with ALS

The ALS Association was recently invited by the Center for Medicare & Medicaid Services (CMS) to present directly to the head of CMS, Administrator Chiquita Brooks-LaSure. You can read a transcript of the presentation by Dr. Neil Thakur, Ph.D., Chief Mission Officer for The ALS Association, which he gave on Tuesday, September 21. Or you can listen to his comments here.

I am Neil Thakur, the Chief Mission Officer for the ALS Association. We serve about 20,000 people with ALS and their families each year. Thank you for inviting me to speak with you.

ALS, or amyotrophic lateral sclerosis, is a fatal progressive disease that affects nerve cells in the brain and the spinal cord. There is no cure for ALS yet and very limited treatments. The average survival after diagnosis is two to five years.  The majority of people with ALS are Medicare recipients. 

Unlike most Medicare recipients who need extensive home care and rehabilitative services, people with ALS do not improve, and the intensity of their service needs increase over time. That means standard Medicare cost control approaches don’t work well. I will discuss two examples.

The first is home health care. People living with ALS are often avoided or rejected by Medicare-certified home health agencies because they are high-cost patients.  In the cases when people with ALS are able to access Medicare home health they often are shortchanged in terms of the number of hours and kinds of services provided, or even told they are being discharged from care because they have shown no improvement.  

In short, the current structure of the benefit disincentivizes Medicare home health agencies from serving people with ALS.

CMS efforts to control waste, fraud, and abuse often end up harming people with ALS because of their intensive service needs and their declining functioning.  The traditional Medicare home health benefit inadvertently discriminates against people living with ALS. CMS must make it a top priority to ensure that systems that control waste, fraud and abuse can still maintain appropriate services to people with progressive conditions and intensive need.   

Another instance of unintended harms of Medicare policy is how it reduces innovation and access to durable medical equipment that can help preserve engagement and function for people with ALS.

For example, people with ALS can receive tablets with speech generation software to help them communicate verbally, but that tablet is locked to keep them from using the device to engage with the world in the way all Americans do, through email and social media. For many people with ALS, email and social media are the only way they can communicate with the outside world.

Or a person with ALS is prescribed a complex wheelchair through Medicare by their physician. But Medicare says that the seat elevation that they need to go to the bathroom by themselves, and the ramp they need to get outside, are not “medically necessary.” Or they have to go through a lengthy “fail first” process to get the equipment they really need- which is really hard for people with rapidly progressing ALS.

Medicare policies hinder the ability of people with ALS to be as independent and engaged with the world as possible. People with ALS have the right to be outside and to be connected to the outside world. Since Medicare will not fund these functions, equipment manufacturers have little incentive to improve price or function.

Both of these challenges, cost containment processes and limits to DME reimbursement, end up making people with ALS collateral damage in the important war on cost.  To help CMS control cost with more specificity, we ask that CMS become more patient-focused. It is essential, for example, that CMS use patient feedback and experience data in payment decisions.  Payment innovation models should also ensure that value determinations are driven by rigorous patient input.  

We urge you to engage and listen to people with ALS. We can envision CMS patient-led meetings focused on access to Medicare Home Health or DME technology. These meetings could yield important input regarding what is most important to patients and how services and cost containment efforts can be designed more effectively and with more specificity. Ultimately, we need CMS to help us turn ALS from a fatal disease into a livable one.

Thank you for inviting us to speak. We look forward to working with you further.


Submitted by: V B. on Thu, 10/07/2021

I agree with all points made in this article. My husband was one of those who life span from diagnosis was only 2 years. We covered the additional cost of unlocking the communication device and the $2000 for the ‘lift’ feature of his power chair. He could not get into a standing position without this feature… and I, as his sole caregiver, could not lift him. And, we experienced the same issue with physical therapy… he could not, would not get better and the medical agency refused to treat him further.
We do need to tell CMS that one size DOES NOT fit all…. and ALS patients do not have the luxury of time.

Submitted by: Mollie R. on Sat, 10/09/2021

This is so true. My husband's ALS was at a time he could not get a tablet so he speak thru our signal language for 2 and a half years when he lost his voice in the first year.
Each ALS patient does not follow a routine and they need to be listened to.

Submitted by: Kathleen B. on Fri, 10/08/2021

YES! CME needs to understand ALS and it’s process and it’s devastation on an individual & family! ALL the points made by Dr. Neil are 100% accurate!
I was recently diagnosed with ALS —just 3 months after turning 65 & having to become ‘Medicare’ .
What a nightmare! PT Sessions, equipment, many other services needed over time are just going to be a long process, fraught with frustration, anxiety, and use of time that is precious little for a person with ALS! This Medicare & ALS situation NEEDS FIXING soon!

Submitted by: Karen M. on Sun, 10/10/2021

I was diagnosed with Progressive Bulbar Palsy a year ago. My symptoms have just started to progress beyond my inability to speak. We have just started to investigate the help I will need and the info provided in this article saddens me. I pray CMS listens.

Submitted by: Dolores W. on Mon, 10/11/2021

Within 2 months, 2 of my best friends were diagnosed with ALS. Since there was no support group in our area, I started one with the help from Cleveland & Columbus chapters. For 16 years, about 45 ALS patients and their families attended monthly meetings. As they passed, I visited the 2 at their home. It's a heart wrenching disease.

Submitted by: Sandra Y. on Wed, 10/13/2021

Totally agree with the points made. My husband just passed away after 11.5 years of ALS. Medicare should allow services based on a PALS needs, ALS does not fit a typical/normal disease progression. Medicare should also cover more home care to prevent CALS from getting totally exhausted and having health issues. I was a critical care nurse for 21 years and worked with an insurance company for six as a Medical Review Analysis, CPC and Fraud Investigation. I was blessed to have the ability to care for my husband and navigate insurance issues. I would gladly speak out to CMS if given the chance.

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