Identifying Reasons, Barriers to Low Employment Rates in NMOSD: Farrah Mateen, MD, PhD

WATCH TIME: 6 minutes

"This disorder is paralyzing and can be blinding. There are also other more hidden symptoms of NMO like fatigue and pain. You may not be able to see them if you’re looking at a person [with NMOSD], but they can be as disabling as the physical features."

Neuromyelitis optica spectrum disorder (NMOSD), also known as Devic disease, is a chronic disorder of the brain and spinal cord dominated by inflammation of the optic nerve and inflammation of the spinal cord. This rare, autoimmune disease is characterized by relapses, followed by periods of some recovery. Relapses in NMOSD are often severe and can cause permanent damage, so preventing attacks through early and ongoing treatment is important to prevent long-term disability.

There’s an estimated 4,000 to 8,000 people with NMOSD in the US and a quarter million worldwide, with rates higher in women, and most often occurring between ages 30 and 50. While there is no cure for NMOSD at this time, there are effective treatments. At the 2023 Americas Committee for Treatment and Research in Multiple Sclerosis (ACTRIMS) Forum, held February 23-25, in San Diego, California, an abstract depicted the impact of NMOSD on employment, job loss, work hours, and wages internationally.

Led by Farrah Mateen, MD, PhD, the analysis included 158 patients who had been living with the disease for an average of 8.2 years. Following NMOSD diagnosis, the number of patients employed dropped 23%, and the mean work hours lost per month was 35.6. Mateen, associate professor at Harvard Medical School and associate director of the Multiple Sclerosis & Neuromyelitis Optica Unit at Massachusetts General Hospital, sat down to discuss the reasons for the study, along with some of the factors contributing to the rates observed.

REFERENCE
1. Trapaga Hacker CM, Hjerthen IG, Shirkoohi A, et al. Impact of NMOSD on employment: a global survey. Presented at: 2023 ACTRIMS Forum; February 23-25; San Diego, CA. Abstract P320