On November 15 2021, ALS Texas was joined by Neurologists and Clinic Directors, Dr. Jeffrey Tramonte and Dr. Stanley Appel for a special panel discussion. During this exciting presentation, they discussed the growth of multidisciplinary care and where the momentum is in ALS research. Keep reading for a recap of this exciting panel!
Introducing Our Special Guests
Dr. Jeffrey Tramonte is the clinic director at the Emory Bellard ALS Clinic at Baylor Scott & White Health. He has over 15 years of experience working with ALS patients. In 2011, he started the ALS Clinic after treating famous football coach, Emory Bellard, who had ALS. With the support of Bellard and his community, funds were raised to begin the clinic. This year marks a decade of service to Texans with ALS for the Emory Bellard ALS Clinic.
The ALS Clinic at Houston Methodist began in 1982. Dr. Stanley Appel shared it was the first ALS clinic in the world to offer multidisciplinary care. The clinic became an ALS Association Certified Treatment Center in 2016, and next year, the clinic will celebrate its 40th anniversary. “We’re still going, and we’re still committed to doing everything we can to help our patients,” he shared.
These clinics not only provide excellent care to Texans with ALS, but they also bring hope through research.
Research Updates from Houston Methodist
Dr. Appel is known as an innovator in the ALS research field hosting many clinical trials at his clinic. Most notable, he’s discovered a potential treatment that could halt the progression of ALS using regulatory T Cells, aka Tregs. He shared an update on the study during the panel
The latest study for Treg was powered to give them critical answers to the effectiveness of this treatment. But the COVID-19 pandemic has created some delays. Amid these difficulties, Dr. Appel is pressing forward.
“The data looks very promising, very exciting, and we’re really hopefully that in the future in a much larger trial not affected by COVID-19 that we can be successful in bringing new therapy to our patients.”
Houston Methodist not only hosts the T-reg Study but is also a site for the the HEALEY ALS Platform Trial. The platform allows for multiple drug treatments to be tested with one placebo group. This means more patients can participate and there’s a bigger chance they receive an experimental drug and not a placebo. Those living with ALS play an integral part in making these research breakthroughs. Without clinical trials, there’s no way to know the efficacy of a drug.
Research Goes Beyond Clinical Trials
There are often accessibility issues for patients who want to participate in clinical trials. “There’s not enough of them and there’s not enough places to go to get access to the research,” Dr. Tramonte noted. Unfortunately, there are also cases where patients are ineligible to join a trial, but they can still contribute to critical research.
One way Texans with ALS can get involved with research without participating in clinical trials is through the National ALS Registry. This database is the largest ALS research project ever created. It’s also the only population-based registry in the U.S. that provides crucial information to scientists about the disease. This information plays a crucial role in supporting ALS research across the entire country!
Clinical Advancements Over the Years
ALS multidisciplinary care has come a long way since it’s development in the 1980’s. Even in the last decade, we’ve seen massive improvements to the quality of care for those living with ALS. Dr. Tramonte notes that the biggest improvement he’s observed is in feeding tube placement. A decade ago, ALS patients had to do the procedure while their lungs were strong enough to handle the general anesthesia.
“The problem is, is that for a good number of our patients they had really intact chewing, swallowing, didn’t have any nutritional needs, but the lung function was declining.” This would leave many patients with a feeding tube long before they needed it. Today, the procedure can be done under local anesthesia, allowing those with ALS to wait longer before having a feeding tube placed.
Dr. Appel believes that the greatest advancement is in multidisciplinary care itself. “There’s no question that our patients are living longer with better quality,” he shared. He attributes this to the improvements in breathing treatments, like the Trilogy, and nutritional advancements through feeding tubes.
Challenges for Multidisciplinary Clinics
“The biggest challenge for us is institutional buy-in,” Dr. Tramonte shared. “Convincing hospital administrators, healthcare system administrators, why this venture is important.” From a business standpoint, ALS Clinics don’t benefit hospital systems, but they are so important. Clinic directors across Texas know that it’s crucial to share the life-saving impact of these clinics to their administrators.
ALS Texas is dedicated to funding these life-saving multidisciplinary clinics to give Texans with ALS access to excellent care. This is made possible through the support of our community! Despite the challenges of running a clinic, both neurologists have high hopes for the future of their clinics.
Dr. Appel and Dr. Tramonte were asked what they would offer in a world with unlimited resources. Both neurologists emphasized the importance of mental health. They wish to expand their clinics to cover those services through hiring more social workers and psychologists.
“Going through what to expect: the anticipation, the uncertainty, the anxiety, the depression—it’s profound. And not only does it affect the patients right? But it affects families, their caregivers. If we could provide mental health services, that would be fantastic.” Dr. Tramonte
The Future Role of Telemedicine
In the last year, telemedicine has expanded across the country. The concept existed long before the pandemic, but it was crucial in keeping patients connected to their care teams. But what does the future role of telemedicine look like?
Both neurologists agree, there are pros and cons to telemedicine. For some exams and treatments, they require in-person contact. However, there is no doubt that telemedicine significantly expands access to multidisciplinary care. As ALS progresses, it becomes more difficult for patients to travel, so digital visits keep those patients connected.
The approach changes from patient to patient, and doctor to doctor. For Dr. Tramonte’s clinic, it hasn’t met the needs of his patients, but he’s interested to seeing where integrations could improve care. Dr. Appel foresees telemedicine becoming an integral part of neurology in the future. Advancements in smartphones and other technologies opens the door to more possibilities.
What’s Next for ALS Clinics
Dr. Jeffrey Tramonte and Dr. Stanley Appel are eager to share their passion and knowledge about ALS with our community. There’s no doubt that the future of multidisciplinary care looks bright. From expansions to access, to extensions of services, more Texans with ALS are receiving the quality care they need.
To hear more from Dr. Tramonte and Dr. Appel about ALS clinical care and the future of research, watch the full event below!
Find a Multidisciplinary ALS Clinic
John Robinson from Parish, FL, a member of the board of trustees of the ALS Association and retired military veteran of nearly 32 years, was diagnosed with ALS in 2019. ALS not only affects the person with the disease but also their family caregivers. Both he and his wife can no longer serve their communities in the same way because of ALS. “The loss to society of their skills and humanity leaves holes never filled the same way again.”
Sunny Brous, a Texan with ALS, joined the call to share her perspective. Sunny was diagnosed with ALS in 2015 at the young age of 27. For Sunny, access to experimental treatments go beyond extending her own life. “Expanded access is how I can contribute to finding a cure for ALS. It takes my love for others and makes it a quantifiable action combining research and science and my dedication to the greatest good of people living with ALS.”
Sandy Morris, from Truckee, CA played a recorded message. She tearfully shared how many of her friends with ALS died waiting for access to life saving drug treatments. “Think about how much better it would be if we were able to die trying rather than die waiting,” she shared, urging the FDA to consider how their delays harm those living with ALS. “It’s not within my power to save my life—it’s within yours.”
Troy Fields from Champa Bay, FL was diagnosed with ALS in 2018. He noted how the considerations of benefits versus risk should be put in the hands of those living with ALS. “Because unless it is your own life on the line, you simply do not get it.”
Cari Meystrik from Nashville Tennessee was diagnosed with ALS in 1998 when she was only 28 years old. She has watched hundreds of friends die from this awful disease. “Would I jump to try a drug that might help me live longer of a disease that I am dying from if it has already proven to be sage and well tolerated but isn’t approved yet? Absolutely. Give me that chance.”
Jay Quinlan from New Orleans joined with his wife and caregiver Stephanie. “You have shown through your recent handling approvals for COVID vaccines that flexibility and expediting processes are possible.” He asked the FDA to use the same urgency when it comes to approving drug treatments for those living with ALS.
Tommy May from Pine Bluff, AR was diagnosed with ALS in 2005. Due to slow progressions, he was both unable to participate in clinical tries and frustrated with the lack of access to treatments. He discussed how those living with ALS are desperate for HOPE on their path. “We are not interested in the long-term. We are desperate for the here now.”
Larry Falivena of Apex, NC, has ALS caused by a mutation of the SOD1 gene. The fight for treatment access is not just for himself—it is also for his children. “I’m asking the FDA to help make sure my boys don’t have to worry about ALS.” He shares that even if the opportunity exists for just a small number of patients to have extended time on this earth that they need that chance.
