Jaime Basnett is the the ALS research program manager at Mu Health Care's NextGen Precision Health Institute.
The Centers for Disease Control and Prevention estimates the prevalence of ALS (Amyotrophic Lateral Sclerosis), at around 30,000 total cases per year in the United States. Part of Basnett's job is to connect more ALS patients with health services through NextGen - a job made possible by a recent grant awarded to NextGen by the ALS Association.
She spoke about the challenges that rural ALS patients can face, the importance of medical transportation access in Missouri and how NextGen is working to help.
Missouri Health Talks gathers Missourians’ stories of access to healthcare in their own words.
Jaime Basnett: ALS has a little bit of an interesting history; if you look at the Greek and how it's broke down - amyotrophic - it's "A" for "no", and then "myo" meaning "muscle", and then "trophic", or "nourishment", so - no muscle nourishment. And so that's where we really see the functionality. And that is the biggest hurdle for the rural community is - they start to lose their ability. It's like, if we had our vehicle and someone started stealing the tires off of it and the starter, they start to lose their ability to get to and from places.
And a lot of these rural communities are really tucked back into the woods, gravel roads, you know, 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 type services. They'd still have to get transported to somewhere where the emergency medical could land.
Because unfortunately, part of ALS is a loss of ability to breathe, there's risk of aspiration, they lose the ability to swallow - because that is all muscle, controlled by muscle. And as the wiring in our system starts to break down, we lose the ability to signal on that muscle to be able to make that swallow, to be able to breathe.
So they start to become a little bit critical as the disease advances. And so trying to again, network them back in for that support. So the hardest part that I am noticing is that quick diagnosis. A lot of times they know something's wrong, the engine light's 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? Why is you know, one part of this area working and another not.
And it's very atypical in regards to how each individual presents. And so, a lot of times it's that initial - trying to figure out what's wrong, because it seems like once we can, then we can start lining up all the resources. But it's that chunk of time that we lack to get from: something's wrong, the engine light's off, we're starting to lose functionality as they go through the process. And also the insurance, what will the insurance cover? Will they cover the examinations? Will they cover the testing?
And so 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 a challenge, and that is the one thing NextGen really wants to focus on is: how can we make it easier? Because now they are a little bit more advanced in that disease process, so they get worn out. Plus you've got that travel time - that first visit a lot of times is like multi hours. So they're sitting there for hours on end. You know, and it's if we think about a road trip, when you sit in a vehicle for so long, you get stiff, you get kind of achy, you're stressed, it's emotional.
Oftentimes, if it's a new diagnosis, they're getting hit with a landmine type thing, and they're suddenly looking at - the world is getting ready to be flipped upside down and changed. And so that's a lot to process. And that is one of our goals is: how can we - 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, and they're going to be looking at a different direction. So how can we bring that comfort of care back to them and still make them feel empowered?
