Photo by Kevin Morley, Enterprise Marketing and Communications, VCU
As recent advances in ALS treatment show promise in slowing progression, improving function, and helping people live longer, the need to recognize and diagnose ALS earlier has never been more critical.
On average, it takes 10–16 months from the time a person first notices symptoms to receiving an ALS diagnosis. And for members of the Black community, the wait to be diagnosed can be even longer.
Based on data from Virginia Commonwealth University (VCU) Health System’s Certified Treatment Center of Excellence™, Black people with ALS symptoms have to wait 64% longer to be seen by a neurologist/specialist compared with white people—a 15.8-month wait compared to 9.8 months.
“The VCU Health ALS team has been very focused on this specific concern for many years as a result of witnessing these disparities and delayed access to care on a weekly basis,” says the clinic’s director Dr. Kelly Gwathmey, an associate professor of neurology at the VCU School of Medicine.
These delays not only contribute to lost time but also lost function. In fact, Dr. Gwathmey’s research has shown that for every month an ALS diagnosis is delayed, the Amyotrophic Lateral Sclerosis Functional Rating Scale-Revised (ALSFRS-R) score drops by 0.15 points.
The key to a faster diagnosis is being seen by a neurologist who specializes in ALS. That’s why Dr. Gwathmey and her team are piloting a “rapid access” program for their ALS clinic: to get people the answers they need quicker so they can receive care as soon as possible.
“The sooner people with ALS are diagnosed, the sooner they can get into a multidisciplinary clinic, and the sooner they can access the three currently FDA-approved medicines for the disease on the market, helping them live longer,” she says. “Also, the sooner they are diagnosed and seen, the sooner they can get access to necessary equipment, including mobility devices, noninvasive ventilators, and feeding tubes, and the greater likelihood they can participate in clinical trials.”
A critical part of this pilot program, according to Dr. Gwathmey, is getting primary care providers and non-neurology specialists to “think ALS” early on and refer patients directly to the Rapid Access ALS Clinic, bypassing unnecessary and oftentimes painful tests.
One way Dr. Gwathmey and her team do this is by educating providers in their region on the signs and symptoms of the disease through webinars, emails, and brochures that feature the ALS Association’s thinkALS™ tool. thinkALS clearly outlines the clinical features that support—or don’t support—an ALS diagnosis. It was developed by a working group of practicing neurologists, leaders of neurology professional societies, and ALS clinician experts that we convened following a 2020 multistakeholder ALS Roundtable focused on reducing time to diagnosis.
“The thinkALS tool is incredibly quick and easy to use regardless of the provider’s background,” Dr. Gwathmey says. “Having it in the hands of providers—and hopefully posted in their clinics so it is always in sight—serves as a constant reminder that ALS should be a diagnostic consideration.”
According to Dr. Gwathmey, it has been “incredible” to see providers in her region “rally behind this program and the positive impact it is making.”
Over the first 20 months, from September 2022 and May 2024, 70 people were referred to VCU Health’s Rapid Access ALS Clinic. Every person was seen within four weeks by a small multidisciplinary team, which includes a nurse, social worker, respiratory therapist, dietitian, and occupational therapist.
“If they appear to have ALS, we can get things going immediately,” Dr. Gwathmey says. This often means performing an electromyography (EMG) test to help make an ALS diagnosis and providing the results the same day.
Overall, 33 of the people referred to the Rapid Access Clinic (47%) were diagnosed with ALS. Of the other 37 referrals, eight people were diagnosed with a different type of motor neuron disease, and 29 were diagnosed with a non-ALS neuromuscular or neurological condition.
“Though the pilot is still in its infancy, we are seeing that our Rapid Access ALS Program has improved the average diagnostic delay by two months compared to patients diagnosed in the community and directly referred to the VCU Health ALS Clinic in the same time period,” reports Dr. Gwathmey.
The clinic’s Black patients are experiencing even greater improvements. Their diagnostic journey has been cut down by an average of six months (from 15.8 months to 9.9 months), aligning their timeline with that of the white patients seen at VCU Health.
“This has been a passion project born out of necessity, and these preliminary findings give us hope that this model really works,” Dr. Gwathmey says. “It gives me great joy to see that this investment is resulting in improved access for the patients of our region. I am hopeful that we will continue to see these trends and that we can serve as a role model for other regions in the country that are facing similar challenges.”
More information about the benefits of a timely diagnosis can be found on our website HERE.
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