PORTSMOUTH, Va. (WAVY) — With Walk MS just two days away, WAVY.com wants to share with you the details of a first-of-its-kind clinical trial exclusively focused on meeting the needs of minorities living with Multiple Sclerosis.
“It’s very, very exciting. So, it’s been a long time coming, and I’m so excited to be the lead investigator and a part of this really important work,” said Dr. Mitzi Williams, a neurologist, and an MS Specialist in Atlanta.
The “work” Williams is talking about is the CHIMES Trial. It’s a nationwide study of 100 to 150 black and Hispanic/Latino people living with MS.
“If you look at the whole world, MS still primarily occurs in people of Northern European descent, or what we would call white or Caucasian people, but here in the U.S., our population is a little bit different. So, in the past 10 years we realized that MS risk may be up to 47% higher in Black women, and that actually the incidents of MS is highest in Black Americans.”
One of those Black Americans living with MS, is Kaci Bell. Kaci is a realtor and social media influencer living in Texas.
“I’ve been around [MS] all my life,” said Kaci.
Since birth, Kaci Bell watched her mother navigate Multiple Sclerosis. So, when Kaci herself was diagnosed at the age of 22, she wasn’t shocked, even though there is no proof MS is an inherited disease.
“The symptoms that I do experience are the numbness and the tingling. That comes at random. I do experience migraines, definitely heat intolerance. My balance is a joke,” said Bell.
MS is a disease of the central nervous system that disrupts the flow of information from the brain to the body. Even though Bell’s balance is off, and she suffers from heat intolerance, which means it can exacerbate her MS symptoms, she finds a way to roller skate regularly.
Bell proudly displays video and pictures of her rocking out on her roller-skates on her Instagram account. At that same account, she also posts about life with MS and uplifting messages that give hope to others.
Williams believes the CHIMES Trial is also something that will give hope to others.
“When we have a richness and diversity of our clinical research groups, it not only helps people have access to cutting edge care, and really good care for their MS, but it also helps us to understand things that would improve care for everyone living with this condition.”
In addition to incidents of MS being highest in black populations, Williams says, “We know that populations, such as the Black and Hispanic/Latino populations, tend to have worse outcomes for their MS. So, more disability, more spots or lesions on their MRIs, more difficulty walking, and we really don’t understand why, because when we look at our large clinical trials, there’s very little enrollment. So, most of our trials have 10 to maybe 30 Black patients in them, and you can’t really make a generalization out of 30 people or even 40 or 50 people out of several thousand. So, this trial is specifically focused on these populations to understand how certain medications affect them. One particular medication we are using for this trial is Ocrevus.“
Williams says this is groundbreaking research that can truly change lives.
“We’re looking at different markers to see how the disease may progress, as well as to see how people do on medication for MS to try to better understand what’s going on,” Williams said.
Right now, there are about 50 patients signed up for the CHIMES Trial. The goal is to add 100 more participants. Bell is hopeful minorities join in to participate, though she points out why there might be hesitation.
“People of color, and more specifically people in the Black community, have a generational trauma of being clinically tested on, clinically trialed, because previously it was said to be that and it ended up not being that, and I’m most specifically talking about the Tuskegee Syphilis Experiment. So, a lot of people in the Black community are like, ‘No I don’t want to go to the hospital. I don’t want to be tested on.’ And I feel like that also adds to the reason why there’s not a lot of Black people in clinical trials altogether,” said Bell.
Williams understands the concern and says that is exactly why the CHIMES Trial is necessary.
“We also know that there’s discrimination or bias within the medical community and some people’s symptoms may or may not be believed, and so when we look at severe outcomes, it’s important for us to understand are these severe outcomes because of social determinants of health, or is there a biologic difference, right? Because if there’s a biologic difference, and we’re able to identify a marker, that may be something that will help all people with this condition. When we have a richness and diversity of our clinical research groups, it not only helps people have access to cutting-edge care, and really good care for their MS, but it also helps us to understand things that would improve care for everyone living with this condition. “
Improving care, and finding a cure, is the goal of everyone touched by multiple sclerosis in some way.
“We have known about MS since the 1800s. We had no medications approved until 1993 and from 1993 to now, a little over 20 years, we have almost 20 different therapies. So, we’ve come a long way, but I think that adding that diversity to the groups of people who are involved in our research will really help us turn that extra corner to get closer to finding a cure.”
If you want to participate in the study, Williams says there are about 25 to 26 sites across the country. She encourages you to speak with your healthcare provider to see if the study is being offered in your city.
In the meantime, it’s not too late to participate in this year’s virtual Walk MS. That is this Saturday, May 1. To join the WAVY Warriors, or to donate to the cause, click here.