Mitzi Joi Williams, MD, founder and CEO of Joi Wellness Group Multiple Sclerosis Center, shared her thoughts on changes to the MS care model over the past year, as well as how the pandemic and telehealth have affected care for underrepresented populations.
Over the course of 2021, the COVID-19 pandemic continued to affect the global community, further impacting care for patients with chronic illnesses like multiple sclerosis (MS). The introduction of telemedicine for these patients has offered benefits, particularly in the realm of symptom management, as well as drawbacks for those who may not have access to technology or an understanding of how to navigate it.
For underrepresented and minority populations, the pandemic also highlighted health disparities that persist in the US for patients with multiple sclerosis, as well as different conditions. During the pandemic, initiatives were set in motion, namely the first trial focused exclusively on Black and Hispanic patients with MS—the CHIMES trial (NCT04377555)—and the establishment of the National African American MS Registry.
Mitzi Joi Williams, MD, founder and CEO of Joi Wellness Group Multiple Sclerosis Center, sat down with NeurologyLive® to discuss changes she observed over the course of 2021, speaking to the pros and cons of telemedicine, as well as how symptom management and rehabilitation processes were modified to account for remote visits. Williams further spoke to the care of underrepresented populations, sharing her thoughts on the myths surrounding clinical trial enrollment.
Mitzi Joi Williams, MD: Over the past year, certainly things have shifted with the advent of telemedicine in the field of MS. Telemedicine has been very widely used in some fields of neurology, primarily for stroke in the past, but has not been used very effective for MS. Much of symptom management, especially for those visits in between big MRI visits, have really been done via telemedicine, and so it's been a very convenient way for patients to reach us—certainly a convenient way for us to be able to talk to our patients. However, it can be limited because of technology issues, but also because we can't do as good of a neurologic exam. But symptom management, as I said, in some ways has become a lot easier during the pandemic.
It definitely has had some effects on rehabilitation. I would say since the pandemic began, many patients have been hesitant to participate in physical therapy, especially because often there's not a lot of social distancing, there may be several people there at the same time working on the same equipment, and also, when people have been homebound and had someone coming to their home, there also has been some hesitancy to allow people into their home. I will say that it definitely has been much more limited since the pandemic, but things are starting to open up again.
Since the advent of the COVID-19 pandemic, I think it's really shined a spotlight on the health disparities in our country. We've really learned a lot more about how ethnicity systemic racism, how living in rural populations, and [having] limited access to transportation and care has really affected health outcomes in a real time basis. I think, first of all, we see that these disparities are not limited to multiple sclerosis but are very pervasive throughout many different conditions. In the area of multiple sclerosis, I think that there have been several advances that have come about—things that were in the works, but certainly, the pandemic may have been able to garner more support to be able to push these initiatives out into the forefront.
There's the first Black and Hispanic in this trial, the CHIMES trial, which has completed enrollment ahead of schedule during a pandemic. I think that we've got some hope that learning more about these populations will help to improve the understanding of MS overall, but also, we hope to help dispel some of the myths about people not wanting to enroll in clinical trials. If we give people access and if we go to places where these populations are being seen, we can accomplish these goals and improve our understanding. Also, the National African American MS Registry rolled out in the midst of the pandemic, and so I'm very hopeful for the future in terms of many of the initiatives that have gone out. There also was a recent article in the American Journal of Medicine about health disparities in African American and Hispanic/Latino patients. I think the momentum is there; I think that there are people who are interested and committed to doing the work, and I think that there's a lot of support lended to helping to better understand the impact of social determinants of health, as well as biology, on disease outcomes in some of these underrepresented and underserved populations.
I will say telemedicine has really been a double-edged sword. There have been many pros, but there are also some cons. People who don't have good internet access, do not have access to telemedicine—this same group of people, who may be able to drive to a visit, now can't access care because their doctors are doing 100% telemedicine, depending on their institutions. You also have people who are not very familiar with working with technology. Some of my older patients, who don't necessarily have the support of a grandchild or a child to come and help them, may not be able to use the technology effectively.
I think on the flip side, there are some people who may have had transportation issues, who do have access to the technology, and can be able to engage in the health care system in a different way, without having the burden of having to get someone to drive them to that doctor's appointment or take a day off work to do that. Again, there have been many pros, but there are also some cons, so there are still some that don't have access to the care that they need, unfortunately.
Transcript edited for clarity.
Have you nominated your Giant of Multiple Sclerosis? Help us recognize and celebrate pioneers, innovators, and leaders in MS. Nominate today.