When. Drs. Mohamed Kazamel and Nan Jiang took the helm of the UAB ALS Clinic in 2021, their goal to provide comprehensive care to patients with amyotrophic lateral sclerosis (ALS) in one clinical setting came to fruition. Thanks to the support of state funding, the clinic was able to offer patients access to nine medical professionals in a single visit.
“It’s a multidisciplinary clinic, which offers extensive supportive care,” said Jiang, M.D., Ph.D., clinic co-director and associate professor in the UAB Department of Neurology.
Now, heading into year three of state-funded support with $750,000 awarded from the state budget for FY 2025, the ALS clinic has only strengthened its efforts to address patient well-being and bolster focused research efforts to combat this progressive neurological disease.
A growing clinic
UAB’s original multidisciplinary ALS clinic started in 2011. Twelve years later, the first round of funding from the state came in FY 2023. At that time, the clinic was able to start paying therapists who had previously worked sans compensation. In addition, patients who were seen every six months started to be seen more frequently.
“Now with the amount of funding that’s available, we are able to pay the therapists to come every three months,” said Kazamel, clinic co-director and professor in the UAB Department of Neurology. That’s a significant improvement in the practice, and that qualified us to obtain the level of Center of Excellence in ALS from the ALS Association.”
The clinic routinely sees approximately 120 patients per year on a once-every-three-month schedule. The addition of telemedicine has allowed expanded access for ALS patients to see care providers—providers who have also increased in number since the clinic first received state funding for FY 2023.
The recruitment of a dietician, speech therapist, psychologist, clinical research coordinator, and more were included in the growth of the staff, who now comprise a nine-person team.
“And each and every one is productive in participation with patient care, and also with research,” Kazamel said.
Clinical trials and meeting challenges
ALS affects motor neurons, which leads to muscle weakness that spreads and worsens over time. With no cure for ALS, research into ways to halt or slow its progression is critical.
The clinic is currently working on two major projects to promote clinical trial readiness to attract certain clinical trials for ALS patients. The first is to establish a database for all of the clinic's ALS patients dating back 10 years and onwards.
“It can be available for any further statistical analysis to show that we are ready with numbers to start a clinical trial on a certain population of the disease,” Mohamed explained.
The second project involves creating a biobank for fluid samples from ALS patients to aid researchers in following certain biomarkers to track the progression of the disease.
“My hope is to have a large amount of data from the samples that we are trying to start collecting from the patients and be able to correlate those to the clinical data that will be on the database we are establishing,” Mohamed said.
In addition to critical ALS research, the UAB ALS Clinic also helps patients meet challenges related to equipment needs.
“Many of the very sophisticated devices the patient needs are occupational therapy and speech therapy related,” Mohamed said. “Some patients also need wheelchairs, some need Hoyer lifts. Most of the time, insurance pays for this.”
However, if there is a lapse in time before a patient’s insurance benefits are initiated, the clinic has patients covered.
“We manage to secure funds to have a large amount of equipment that we can actually loan to patients in order for them to continue to have the benefits while their insurance kicks in,” he added.
Serving a diverse population and maintaining excellence
One thing that identifies the UAB ALS Clinic is its ability to serve a large, diverse population. It’s a factor that attracts other ALS researchers nationwide to pool resources with UAB, allowing for enhanced support of research efforts.
“When people from all over the country hear about this as a unique feature of our patients here at UAB, they are very enticed to have us as collaborators in whatever epidemiologic or clinical research projects that they are performing,” Mohamed said.
As the clinic anticipates its future regarding the fight against ALS, clinicians hope their increased funding support will allow the clinic to attain and maintain its status as a Center of Excellence. Doing so requires continuing to see more patients, more frequently, while expanding access to clinical trials—results of which may eventually lead to improved treatment options for ALS patients, or even a cure.
“It plays a very important role in the whole country, for all ALS patients in society,” Jiang said.