Amyotrophic lateral sclerosis, or ALS, is a complex, incurable neurodegenerative disease that affects the motor neurons –neurons that control motor function in the brain, brainstem and spinal cord. Patient care includes going to several healthcare providers such as a neurologist, physical therapist and occupational therapist, etc.
“In order for us to take care of those patients, we need a multidisciplinary approach. You cannot ask a patient who has such a devastating diagnosis to go to visit all of those providers on separate occasions. A patient will simply spend their entire lifetime going to doctor’s appointments or medical providers’ appointments,” said Mohamed Kazamel, MD, ALS clinic co-director and associate professor in the Department of Neurology, Marnix E. Heersink School of Medicine.
The University of Alabama at Birmingham’s new ALS clinic allows a patient to see eight health care providers in one visit, with one co-pay. The patients will interact with their neurologist, physical and occupational therapist, dietitian, speech therapist, psychologist, social worker and respiratory therapist.
“Before the clinic, the patient typically does not see all the providers. We thought that the care for patients was very deficient, in the sense that we focused on the most important aspect and leave other aspects of patient care,” Kazamel said. “The care is efficient now.”
Because of a grant from the Alabama Department of Commerce Innovation Fund, the clinic now supports 150 patients who visit every three months instead of every six months, like previously. The patients can come on the third Monday or Friday of the month. In the beginning, the clinic was only able to see seven to eight patients a month. Now, 16 to 18 patients can be seen. On their visits, patients will sit in the same room for three hours while each health care provider comes to them.
According to Nan Jiang, MD, PhD, ALS clinic co-director and associate professor of neurology, the clinic provides for patients who live outside of Alabama. “We see patients from Mississippi, Florida, sometimes Nashville and Georgia, so basically the surrounding states,” she said. “Sometimes people will drive four or five hours to get here.”
The ALS clinic recently hired a clinical trials coordinator, Olivia Scogin, to continue to collaborate with the Northeast Amyotrophic Lateral Sclerosis Consortium clinical trials. Last year, the NEALS research organization enrolled multiple ALS patients from UAB to participate in an international trial of a new drug that may help prolong overall survival by up to two years.
“For clinical trials, she [Scogin] helps patients get their labs, other medical examinations, questionnaires that the study requires answered and takes the patients to the investigational pharmacy to get their medications. Her role is essential for clinical trials to be done at UAB,” Kazamel said.
Jiang and Kazamel said they are excited to see the clinic double its patient intake to help those diagnosed with the devastating disease.
“People really suffer from this disease and can have a poor quality of life. Though they can’t live forever, with our clinic, they can have a relatively good quality of life,” Jiang said. “Their appreciation makes me feel like my job is rewarding.”
Kazamel said he believes that most physicians and neurologists don’t like to give an ALS diagnosis to a patient because it is a horrible disease, but it is a very humbling experience to care for those diagnosed. “We are quite excited about the clinical trials in the pipelines that could potentially help our patients, especially in the era of precision medicine,” Kazamel said. “Now every patient is different, and we are hopeful that we live one day to see where there is a cure for the disease.”