Patterns of Care in the U.S.

This work started shortly after my diagnosis in 2016. Prior to my diagnosis, I worked at Esri for 16 years as Team Lead for Utility solutions. My responsibilities were to gather user requirements and develop solutions that enabled utility companies to improve operating efficiencies through spatial analysis.

While I was attending my first ALS clinic, I met ALS patients traveling more than 100 miles to attend clinic. I immediately thought that we need to map ALS clinics to understand the issue and find a way to minimize drive time to clinic. These are the same problems I worked on my entire career—just a different industry to apply spatial analysis on.

Eventually, we had so many maps that we launched the ALS Geospatial Hub in May of 2022. This Hub allowed us to provide a central location to access our maps and analysis. Plus, it gave us a place to develop & host apps to support the ALS community.

This photo was taken during one of my clinic days at the Loma Linda ALS Clinic in California in 2016. I was explaining my work to my neurologist and his medical students.

All of the maps and analysis you'll see were done using eye gazing technology.

A special thanks to  Team Gleason  for their investment in eye gaze technology, which has allowed me to continue my life’s work. And the  ALS Association , specifically Mauri Clark, Lori Banker-Horner, and Audrey Footerman for their collaboration on the ALS clinic information.

This map shows 284 (67 are VA) clinics in the US, which includes the ALS Association -certified centers & clinics, Muscular Dystrophy Association certified MDA/ALS Care Centers, VA clinics, and patient-reported clinics. This number does not include the neurology group practices and solo practitioners that provide care to the ALS community.

The source information is from The ALS Association, Muscular Dystrophy Association, Veterans Administration, HEALEY Platform, and the ALS community.

The clinic map was last updated on Nov 9th, 2024.

There are 236 centers & clinics certified by the ALS Association (ALSA).

There are 67 VA ALS clinics (clinics for military veterans with ALS).

Military veterans have a 4-10X higher risk of developing ALS than the general population. Source:  Military Medicine 

This map shows Veterans Integrated Service Networks (VISN) summarized with the number of VA ALS clinics, post-Gulf War veterans, and total veteran populations.

Click a VISN market or a clinic in the map for detailed information.

There are 77 HEALEY ALS Platform trial sites in the U.S.

This map shows the 77 ALS clinics participating in the HEALEY ALS Platform trials.

Better understanding the gaps in care—such as distance barriers to clinics, transportation barriers, & financial barriers—is the first step in mitigating those gaps most effectively. We've found that simply knowing that ALS clinics exist (& knowing how they can help) is yet another barrier to care.

In the U.S., there are 460 cities (purple dots) with 14.5 million people who are 90 minutes or more from an ALS clinic. For these cities alone, there are an estimated 1,194 - 1535 ALS patients who have a 90-minute or more drive to clinic.

Explore the map to see the gaps in accessing care.

Source: Latest estimates from the CDC National ALS Registry has estimated 29,824 cases were identified, for an adjusted prevalence of 9.1 per 100,000 US Population.  article  

Distance barrier

There are 67 VA ALS clinics in the U.S.

There are 8.8 million (52%) veterans live 90 minute drive or longer to a VA ALS clinics.

This map shows the 43 VA ALS clinics, the 90 minute drive time polygons (red polygons), and population centroids by state, county, and census tract of military veterans in the US.

Distance barrier

There are 77 HEALEY ALS Platform trial sites in the US.

There are 1,320 cities with 52 million people who are 90 minutes or more from an ALS clinic that is participating in the HEALEY ALS Platform trial.

Distance barrier

The challenges of attending clinic every three months are many and they range from long drive-time to clinic, no access to transportation, no insurance coverage, insufficient funds, not speaking English, and not having internet for telemedicine or to find out about clinics.

Imagine driving 3 hours to attend clinic, which lasts 5-7 hours because you meet with a neurologist, respiratory therapist, occupational therapist, physical therapist, nutritionist, mental health therapist, and speech therapist. After the drive home you've put in a hard 11-15 hour day.

Distance is a significant barrier even in early-stage ALS. It quickly becomes the dealbreaker to attending clinic as the relentless ALS progression marches on.

This map shows all ALS clinics in the U.S. and their 90-minute drive time polygons (shown in red).

Transportation barrier

Your vehicle must have a ramp to transport your power wheelchair and must be large enough to hold your equipment (ventilator, suction machine, neb machine, cough assist machine, filters, suction tubes, gloves, feeding tube supplies, formula, hygiene supplies, syringes, meds, & so much more).

Access to a vehicle that can transport you, your caregivers, and your equipment safely can be a major barrier to attending clinic.

This map shows ALS clinics, the 90 minute drive time polygons (shown in red) to clinic, and the households without access to a vehicle.

Transport services outside of Medicaid cost between $200 and $5,000 depending on mileage, how much room you need in the transport, and whether or not you want medical services available in the transport.

Health insurance barrier

Having health insurance is essential to pay for the quarterly clinic visits and the treatments, supplies, and drugs to slow the progression or help manage symptoms.

This map shows ALS clinics and the population percentage with no health insurance coverage.  

Zoom in to see more information at the county and postal code level.

Income barrier

Having the financial support to not only travel to clinic but to also pay for clinic visits, treatments, equipment (wheelchairs, ventilator, etc.) supplies, and medicines that insurance doesn’t cover is essential to attending clinic and making it worth your while.

You need additional funds for home caregivers, which run about $250,000 per year unless you are a veteran or are on Medicaid. You'll also likely need funds for home modifications and transportation.

This map shows ALS clinics and the population percentage whose income is below the poverty line.

Zoom in to see more information at the county and postal code level.

Language barrier

Language can be a barrier when English isn’t your first language.

This map shows ALS clinics and the population percentage who speak Spanish at home.

Zoom in to see more information at the county and postal code level.

Internet access barrier

Internet access is essential for reviewing lab results, communicating with your doctor & therapist team, and attending virtual clinics.

This map shows ALS clinics and the percentage of households without internet access.

Zoom in to see more information at the county and postal code level.

Late one night, two ALS warriors exchanged emails asking each other a few simple questions.

What if you could locate the nearest clinic and see what others have experienced at that clinic?

What if you could get recommendations from other caregivers on what to ask before attending the clinic?

And what if the clinics could get the complete survey results and respond to survey comments and suggestions?

Survey

The survey was designed by people living with ALS and their caregivers for people living with ALS and their caregivers.

The survey has been reviewed by a premier ALS Clinic in the northeast.

The survey covers neurology to clinical trials to adequate ADA parking.

The survey is eye-gaze friendly.

600+ surveys have been completed, covering 170+ clinics, which is 70% of the clinics in the US.

This includes 200+ neurologists surveyed.

Take the survey or look at survey:   survey 

Results

The ALS Clinic Advisor results, also known as the advisor dashboard, allows you to see the full survey results and filter them in many different ways.

Click  here  to open the Dashboard.

Insights

In December of 2023, presented our insights from the surveys at the 34 ^th  International Symposium on ALS/MND in Basel, Switzerland.

One of the key insights was that only 36% of clinics educate their patients on clinical trials.

You can see the entire poster  here .

Watch the webinar to learn more about the survey and how patients can use the information for their next clinic visit.