My husband, Rahul Desikan, MD, PhD, was diagnosed at age 38 years with bulbar amyotrophic lateral sclerosis (ALS), a fatal, progressive neurodegenerative illness that affects speech and swallowing abilities first, followed by limb function and breathing. Rahul was a neuroscientist-physician and, ironically, had been studying neurodegenerative diseases like ALS before he was diagnosed.
Rahul’s disease was rapidly progressive. He tried many treatments including riluzole and edaravone, the only medications currently approved for treatment of ALS in the US by the Food and Drug Administration (FDA). He tried herbal remedies and energy healing, treatments that came with a promise to slow his disease progression and even reverse the disease process. Nothing worked. His worst fears of being locked in were realized within 6 months of his diagnosis. After being locked in, Rahul was able to communicate only through using a speech device or by blinking.
Identify all potential conflicts of interest that might be relevant to your comment.
Conflicts of interest comprise financial interests, activities, and relationships within the past 3 years including but not limited to employment, affiliation, grants or funding, consultancies, honoraria or payment, speaker's bureaus, stock ownership or options, expert testimony, royalties, donation of medical equipment, or patents planned, pending, or issued.
Err on the side of full disclosure.
If you have no conflicts of interest, check "No potential conflicts of interest" in the box below. The information will be posted with your response.
Not all submitted comments are published. Please see our commenting policy for details.
Vijayaraghavan M. Improving Access to Clinical Trials for Amyotrophic Lateral Sclerosis Treatment. JAMA Neurol. 2020;77(6):671–672. doi:10.1001/jamaneurol.2020.0421
Coronavirus Resource Center
Customize your JAMA Network experience by selecting one or more topics from the list below.
Create a personal account or sign in to: