Neurologist Dr. Carlayne Jackson leads the ALS multidisciplinary clinic at UT Health San Antonio. This year, the clinic reached an incredible milestone of serving the ALS community in Texas for 25 years. From 1996 to 2021, their mission remains the same—provide excellent multidisciplinary care for Texans living with ALS.
A Humble Beginning
Flash back to the 80s, where in San Antonio Mary Klenke connected with the ALS Association of America. They gave her the names of 7 people living with ALS in her local area. She started a small support group that only grew over time.
Mary soon contacted Dr. Allen Gruber, the neurologist at UT Health Science Center in San Antonio. She explained that she was volunteering with those living with ALS and offered to assist with any new patients. Dr. Gruber later moved on and Dr. Richard Barohn took his place. He would call Mary each time he made a new diagnosis.
Concurrently, Dr. Jackson had just finished her residency was building her experience with ALS as a disease. “Dr. Barohn was my mentor and he had started to do clinical trials in ALS during my fellowship in 1991.” Dr. Barohn soon took another opportunity at UT Southwestern in Dallas, but not before he introduced Mary to Dr. Jackson.
His departure left Dr. Jackson to serve as the principal investigator in the ALS trial using ciliary neurotropic growth factor for ALS patients. “It was through that trial that I really got connected with the ALS community and the ALS patients and really developed a passion to care for them specifically.”
The further Dr. Jackson and her team moved through the trial, the more they observed the benefits of multidisciplinary care.
Pursing the Multidisciplinary Care Model
During the clinical trial, Dr. Jackson observed her patients once a month, in addition to a physical therapist performing evaluations. “We saw that that kind of multidisciplinary team was just so much more effective in addressing patient issues and anticipating their needs.”
This model of care offered a different approach from Dr. Jackson’s usual routine. She would visit her ALS patients by herself once every three months, the standard of care at the time.
Dr. Jackson reached out to Mary again sometime around 1993. Mary’s group had officially joined the national organization as a local chapter. The ALS Association was also working on a multidisciplinary model of care. There were very few clinics in the United States, and even fewer in Texas.
Dr. Jackson shared that she wanted to start a clinic and hoped the ALS Association would sponsor it. At that point, the clinic at UT Health San Antonio worked to staff the full complement of team members. They continued to build connections with the local Texas Chapter and connect with the vision of the national organization. “We applied and we were formally certified in 1996,” Dr. Jackson said.
“The clinic is the best thing we have ever done for ALS patients because they get that professional care and receive hope. Even though we don’t have a cure yet, we can give our love, our care, our expertise, and be there for them,” Mary Klenke.
Expanding the Multidisciplinary Model in Texas
Twenty years after the creation of the ALS Clinic at UT Health San Antonio, Dr. Jackson found an opportunity to help expand multidisciplinary care in Texas. Her team found that many of their ALS patients traveled as much as 6 hours to make it to clinic. “Not only was it a huge time commitment, but also a financial burden,” Dr. Jackson noted. At the same time, the clinic noticed problems with access because slots filled up so quickly in the schedule.
A patient’s daughter approached Dr. Jackson’s team with an opportunity to partner with Doctors Hospital at Renaissance in Edinburg, TX. That hospital would provide PT, OT, and speech therapy, and Dr. Jackson’s team would secure the rest of the team. Dr. Zuka Khabbazeh, a neuromuscular trained physician, expressed interest in leading the team.
Dr. Jackson and members of her team traveled to the Rio Grande Valley to mentor this new clinic team. She and the San Antonio team even travelled to the hospital for the clinic’s grand opening in October 2017. “Those patients have really benefited,” she shared.
Milestones Along the Clinic Journey
Over the years, Dr. Jackson observed many milestones and accomplishments at the clinic at UT Health San Antonio. “I think one of the things I’m really proud of is that we’ve always had access to clinical trials.” She elaborated that these opportunities not only included clinical drug trials, but also studies to help understand ALS as a disease. These opportunities include blood donations for biomarker studies, including their information in data repositories, and more.
“Patients hopefully feel more engaged and know we’re working hard to solve the problem and not just to take care of them while they’re there.”
Dr. Jackson shared that the team has incorporated neuropsychology into the clinic team. “Now all patients receive baseline neuropsych testing to determine if there is any component of frontotemporal dementia.” This knowledge not only helps the clinic team administer proper care, but it also benefits the caregiver. Being able to address, cope, and care for behavioral changes is crucial for proper home care.
“We have counseling services now that we never had access to,” she shared. This brings another layer of full body and mind care at the multidisciplinary clinic. Over 25 years, these are just a few of the advancements Dr. Jackson’s team have made in the clinic.
Then and Now: Advancements to Care
When asked how standards of care have improved over the last 25 years, several things came to Dr. Jackson’s mind. “The biggest thing has been the respiratory intervention and our partnership with RQS.” Their ability to perform Pulmonary Function Tests at home, educate caregivers, and troubleshoot equipment is an amazing feat. She mentioned that this was especially beneficial during the pandemic when many clinics were unable to see patients in person.
“The other real breakthrough since COVID has been our use of telemedicine,” Dr. Jackson shared. Telemedicine breaks down barriers to access by allowing patients to connect with their care team from miles away. Dr. Jackson noted how some of the patients in the Rio Grande Valley still connect with their team via telemedicine.
If patients have urgent issues, she can join a video call with them instead of waiting for the clinic appointment. “Particularly for patients with mobility issues or patients that rely on tracheostomy ventilation, we can now provide that same level of care virtually.” She hopes to continue this practice in the future.
Community and physician partnerships also grew tremendously for Dr. Jackson’s clinic.
“We’ve been able to partner with gastroenterologists and pulmonologists, and people outside of that core clinic team…We’ve really been able to strengthen our relationships and connections with community resources. And a lot of that has to do with the ALS Association folks knocking on doors.”
These connections are lifechanging for the Texans with ALS in South Texas. “It’s really taken a long time to establish those relationships,” Dr. Jackson shared. “But I think once those people are hooked, they continue to provide amazing care and continuity of care.”
Then And Now: Advancements to ALS Research
Dr. Jackson and her team are dedicated to not only serving Texans with ALS, but also searching for a cure. “We’ve come a long way in terms of trying to make clinical trials more appealing to patients.”
She discussed how the HEALEY ALS Platform Trial is a testament to these advancements. UT Health San Antonio houses one of three HEALEY ALS Platform trials in Texas. “It’s a really unique trial design in the sense that we’re now studying five different compounds at the same time and only one placebo group.”
In the past, those living with ALS would apply for clinical trials. If accepted, they had a 50/50 chance of getting a drug. And there was no access to the treatments post trial. The HEALEY ALS Platform Trial changes everything. “Patients have a 75% chance of getting an active drug throughout the trials. And they are all guaranteed access to the drug in an open label extension after the trial is over.”
Dr. Jackson estimates that 25 years ago, only 5% of their patients were involved in research. Today, she estimates that at least half of their patients are participating in some type of research now. This includes not only drug testing, but also donating blood and their medical data. She notes that many of these opportunities were made possible through the advocacy efforts of ALS Texas.
A Culture of Hope & Positivity
With all the advancements in care and research, one thing remains constant at this clinic, a dedicated team. Dr. Jackson described a team that views the clinic as a ministry and not just a job. The team at UT Health San Antonio views itself as a family, and that sentiment extends to the patients.
The culture that we’ve been able to develop is one of hope and positivity and not doom and gloom. There’s a lot of laughter. There are some tears. But there’s a lot of laughter and joy that’s shared between team members and patients and caregivers, and that’s unique.
Like Dr. Jackson, many of the team members have been at the clinic for years and decades. When we can say decades of experience with ALS, that speaks volumes. Many patients have experiences where they interact with a local neurologist or doctor who has never seen an ALS patient before.
The care services team at ALS Texas frequently hear glowing reviews of the clinic. They note that Dr. Jackson has the perfect combination of knowledge, confidence, and an inviting bedside manner. When those living with ALS come to the clinic, they are not just seen as patients. The team is focused on their whole health and they feel that we truly care about them as a person. “That is certainly our goal,” Dr. Jackson shared joyfully.
What Will the Future Hold?
We asked Dr. Jackson what makes her excited for the future of this clinic. Immediately, shared, “My vision would be to try to expand our clinic to more than one neurologist so we can increase and improve our access.” She eventually hopes to develop another full clinic team and offer a full day clinic to serve more patients.
Dr. Jackson also wants to equip ALS caregivers to care for their loved ones at home. Her vision includes programs that would teach caregivers how to transfer, use a PEG, and more. She excitedly shared how the clinic has improved its psychiatry options over the last two years. “I think to have a faculty mental health provider would be a huge asset and something I would aspire to do.”
Today, the clinic serves an average of 250 Texans living with ALS each year. 50 – 60 of those patients are new every year with the rest being returning. “Because of the durability of the team and the experience of the team we’ve really been able to strengthen and anchor ourselves and the resources available in South Texas and Central Texas.”
Regardless of what the future holds for the ALS clinic at UT Health San Antonio, Dr. Jackson and her team are eager to serve our community for many more years to come.