According to the National ALS registry, the Midwest has the largest number of self-reported ALS cases in the US - but for patients living in rural areas, it can be tough to access medical resources like clinical trials.
A grant awarded to the University of Missouri System's NextGen Precision Health Instituteby the ALS Association is helping to change that in Missouri.
The grant was awarded to NextGen in December 2023 and aims to increase the number of patientswho are able to access clinical trials, which are important to ALS patients since there are few treatments available.
The grant also aims to improve patient experiences for people living with ALS and increasing education and awareness around the disease.
ALS, or Amyotrophic Lateral Sclerosis, is a degenerative disease that impacts the nervous systemand causes muscle atrophy, which is when muscles thin and waste away.
Though the root cause of ALS remains unknown, researchers are working to better understand the disease and how it passes on to develop new treatments – part of the grant will also support this kind of research at NextGen.
Jaime Basnett was recently hired as the ALS Research Program Manager at NextGen Precision Health to help connect patients with NextGen and decrease barriers to access.
"It's continuity of care at the end of the day, and it's streamlining that takes the stress off the patients"Jaime Basnett
She describes her work as a pie with four pieces: research, clinical work, outreach and education. But the main goal is to reach patients with lack of access to health services and make it easier for them to reach care – especially rural patients.
“The one thing NextGen really wants to focus on is: how can we make it easier,” Basnett said. “We can't take away the life change, but how can we at least help them feel supported now that they've suddenly got knocked off course.”
NextGen runs many clinical trials for ALS and employs a team of ALS researchers who are working to find its root causes and develop new treatments.
But, Basnett added, it's also a place where patients can access care from medical teams – including diagnostic care and education.
In addition to communicating between research and medical teams to help coordinate care for ALS patients at NextGen, a big part of Basnett’s job is helping to get patients to the diagnosis stage in the first place.
“The hardest part that I am noticing is that quick diagnosis - a lot of times they know something's wrong, the engine light has gone on, but they don't know why. And sometimes the engine light will flicker. And so it can be a pretty long process to figure out with the mechanic - what is going on with the body,” Basnett said.
But once a patient receives a diagnosis and gets connected with NextGen, Basnett said the process takes off.
“Finally, when they are able to come see a neurologist here at the university, then it's - I feel sort of bad because we sort of steamroll them. Now we're up against a clock, and we want to get everything set up. And then it does become the challenge,” Basnett said.
Basnett said she also finds ways to ease that challenge and take some of the burden off of the patient. Things like coordinating transportation for patients with long drives, educating about the treatment process and discussing mental health support are just some of those solutions.
"A lot of these rural communities are really tucked back into the woods - gravel roads, switchback type atmosphere - some have lack of family support, lack of resources, not a lot of community support, so there isn't easy access to meals on wheels, or medical transport. If they're in a wooded area, they can't even get helivac (helicopter) type services"Jaime Basnett
But one of the biggest hurdles is getting more patients connected with NextGen, which is were outreach to providers comes in.
"It’s going to be that primary care provider that is going to be their first stop… and then plug them into NextGen," Basnett said "Because it's not even just about ALS – they’re researching a lot. And so, if we could just even get that two-way communication going, I think that would be a huge barrier that we could break.”
Research has shown that ALS patients in rural areas can also face additional challenges accessing care – like long drives to reach medical centers, lack of transportation, low EMS availability or limited access for emergency transport, lack of electricity to power medical equipment, lack of insurance, limited access to cost solutions and more.
But, part of Basnett’s job is to help mitigate those challenges and find ways to help: things like arranging transportation, coordinating telehealth appointments, discussing cost and insurance and coming up with accessibility solutions are all part of her work to get more rural patients into NextGen’s orbit.
She also focuses heavily on awareness and education, especially for families and caregivers of loved ones with ALS.
