The president and chief executive officer of The ALS Association provided commentary on the most pertinent issues with managing patients with ALS and the ways to improve current treatment standards. [WATCH TIME: 4 minutes]
WATCH TIME: 4 minutes
"Our care service teams are such an important part of the work we do. We can help coordinate benefits. Do we have health care? Can we get home health care support? Do people have access to durable medical equipment or technology that allows them to live in easier ways? Technology has changed ALS quite a bit. People can communicate in ways that were never possible."
There are no treatments available to reverse the effects of amyotrophic lateral sclerosis (ALS), so patients mainly rely on different approaches to help control symptoms and prevent unnecessary complications. These patients require a multidisciplinary team, which can consist of physicians; physical, occupation, speech and respiratory therapists; nutritionists; social workers; clinical psychologists; and home and hospice care nurses.
The FDA-approved drugs to treat ALS include riluzole (Rilutek), an oral medication designed to reduce damage to motor neurons by decreasing levels of glutamate, and edaravone (Radicava), an intravenous infusion that has shown to slow the decline of daily functioning. Patients can opt to receive physical therapy and special equipment to enhance their independence and safety throughout the course of their disease. Individuals with ALS who have difficulty speaking may benefit from working with a speech therapist, and devices such as computer-based speech synthesizers can help patients respond to yes-or-no questions.
The ALS Association has been dedicated to improving the lives of patients with ALS, with the main goal of making the disease livable by 2030. One of the core values of this initiative is optimizing current treatments and care, including improving state-of-the-art care and assistive technology. Calaneet Balas, MSc, MBA, president and chief executive officer of the organization, feels as though expanding access of these options is critical for the time being until new therapeutics are brought into in field.