The first case of COVID-19 was reported in the United States on January 19th, 2020. By June 2020, >1.8 million people had been reported infected and >100,000 had died. Due to the COVID-19 pandemic, many MS physicians and patient advocacy organizations have recommended delaying or modifying treatment dosages for patients on high efficacy disease modifying therapies (DMTs). The wider impact of COVID-19 on people with MS (PwMS) has not been well characterized.
To determine how PwMS navigated the initial phase of the COVID-19 pandemic with an emphasis on changes in health behavior, access to MS care, and employment.
A cross-sectional survey of adult PwMS was performed online, using the iConquerMS™ platform, between April 3 and April 30, 2020.
The response rate was 20%. 1,019 PwMS responded completely (average age: 54.2 years, range: 20-81; 79% female; 88% from the USA). 64% had relapsing remitting MS; 22% had secondary progressive MS; and 12% had primary progressive MS. The most frequent comorbidities were: depression (41%), hypertension (26%), and asthma (12%). 748 (73%) used a DMT in the last year, primarily higher-efficacy therapies: ocrelizumab (n=238), dimethyl fumarate (n=85), fingolimod (n=80).
Women were more worried than men about COVID-19 (p=0.001); non-white-identifying PwMS believed it was a greater danger to their health than white-identifying PwMS (p=0.002). 10% (n=98) made changes to their DMT regimen because of COVID-19, most commonly delaying at least one dose (n=65). 26% of those who made changes reported doing so without the input of their neurologist or physician
11% had difficulties and delays accessing DMTs, most commonly ocrelizumab (n=42). 18% had difficulties in non-MS related medical procedures. 64% (n=650) canceled or postponed medical visits and 37% (n=382) had telemedicine visits due to COVID-19.
4% (n=43) of PwMS were tested for SARS-CoV-2: 7 were positive (5 female; age range:29-64 years). Their DMTs were dimethyl fumarate (n=2), ocrelizumab (n=1), rituximab (n=1), and an unstated clinical trial drug (n=1). 128 PwMS (13%) wanted to be tested but were not; 395 (39%) knew somebody exposed to SARS-CoV-2 and 38 (4%) were aware of a personal exposure.
37% (n=374) experienced employment changes, most commonly working from home (n=194) and having work hours reduced (n=65). 32 PwMS lost their jobs.
Although most PwMS expressed worry about COVID-19, only 4% were tested for SARS-CoV-2 and 1% tested positive. Due to COVID-19, PwMS are experiencing changes to their care that could impact their long-term health.