Hope for patients with ALS

November 18, 2020 Swedish Neuroscience Team

Dr. Elliott serves as Chief of Neurology for the Swedish Neuroscience Institute; Medical Director, Neuromuscular Medicine and Medical Director, ALS Clinic. He is also board-certified in Electrodiagnostic Medicine.


I find that caring for patients with amyotrophic lateral sclerosis, or ALS, is extremely rewarding. It is an honor to care for these patients as they courageously confront their disease and adjust to meaningfully live their lives. At the ALS clinic at the Swedish Neuroscience Institute, my team and I take pride in being able to offer our patients multidisciplinary care and support as they navigate living with this neurodegenerative  disease. Unfortunately, there have been few treatment options to modify the progression of the disease, and this has limited just how much impact we can have on their disease course.

That’s about to change, though.

This fall, a team of researchers from 25 institutions across the country—including Swedish—published the results of a groundbreaking clinical trial in the New England Journal of Medicine that offers more hope for patients with this disease. ALS attacks a person’s motor neurons, which control movement, leading to a loss of function and, eventually, death. The new medication that we examined in this trial—a combination of sodium phenylbutyrate and taurursodiol (PB-TURSO)—was shown to slow disease progression, allowing patients to preserve gross and fine motor skills longer.

What’s even more exciting, though, is that the medication shows promise for giving our patients more time. The typical patient can survive three or four years after ALS symptoms begin. In a follow-up study, published this month in the journal Muscle & Nerve, we found that patients who received PB-TURSO lived an additional six and one-half months, compared to patients receiving placebo.

Up to this point, patients with ALS have had access to two medications, riluzole and edaravone. Riluzole has been shown to slightly extend survival, and edaravone has been shown to modestly slow disease progression, but neither medication demonstrated an effect on both. However, this new combination medication had a favorable effect on both disease progression and survival. This can be taken in addition to riluzole and edaravone. The drug’s manufacturer is applying for FDA approval now, and we hope to begin offering it to our patients soon.

A new frontier in patient care

That’s not all we’re looking forward to offering our patients, though. Thanks to a generous gift from a grateful patient, we’re in the process of drastically improving our patient experience by renovating our clinic rooms.

When our patients visit us for an appointment, they meet with more than 10 specialists, over three hours. There’s a lot to discuss and it can be overwhelming, so we want to be very intentional about making the best use of their time. These all-new rooms will feature state-of-the-art technology, including Microsoft Surface Hubs, large interactive “smart boards” that I and the other caregivers can draw on, show videos with and even write notes on that will automatically be uploaded to a patient’s chart.

ALS is a complex disease, and I’ve always found that explaining it visually—through diagrams, sketches and videos—is critical to helping my patients and their family comprehend what’s happening and why. The more people understand, the more productive and efficient their care is.

Those smart boards will be paired with tablets for additional information sharing, and both will be provided in a more comfortable, soothing atmosphere. We’re very fortunate to have donors who can invest in these kind of improvements to benefit our patients.

It’s times like now that I’m reminded just how fortunate the ALS clinic team and I are to be a part of Swedish. We are committed to providing our patients the very best care available, and we could not do that without the research teams or community members who make it possible.

 

To learn more about how philanthropy impacts our work at Swedish, please visit the Swedish Foundation at www.swedishfoundation.org.

 

About the Author

From deep brain stimulation to focused ultrasound to pediatric neurology, The Swedish Neuroscience Team is recognized as national experts to help people address a wide array of neurological conditions. Our goal is to provide useful and helpful advice and tips on non-surgical and surgical options to treat any disease of the mind.

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