Clinical Trial Hopes to Explore Why MS Is Different for Minority Patients

Most studies on multiple sclerosis (MS) and its treatments have lacked diversity, leaving clinicians and researchers without valuable insight into what the disease is like for minority patients—who are affected by MS more often than White patients.

To help address the disparity, researchers are seeking Black and Hispanic Americans with relapsing multiple sclerosis (RMS) to participate in a new clinical trial called the CHIMES study. The study will explore the effect of one of the first-line MS drug treatments, a medication called ocrelizumab, on the progression of RMS in minorities.

Studying MS Treatments

A medication called ocrelizumab (Ocrevus) is one of the main MS treatments. It's a monoclonal antibody that targets the type of white blood cell (B lymphocyte) that becomes overactive and causes nerve damage in people with MS.

Ocrelizumab underwent extensive clinical trials before being approved by the FDA to treat MS, but the population of patients included in the trials did not reflect the patients who are most affected by MS.

Addressing the Lack of Diversity

Decades of research lacking in diversity has led to the belief that MS is most common in White women. However, more recent research has shown that not only is the incidence of MS in Black and Hispanic patients higher than previously thought, but that minority MS patients tend to experience more disability from the disease.

That's one reason why the CHIMES Study intends to specifically look at the effects of ocrelizumab on minority populations.

Barry A. Hendin, MD, a board-certified neurologist and Director of the Multiple Sclerosis Center of Arizona, tells Verywell that most studies that have been done before were either based in the United States or Europe and "looked at Caucasian populations and had a smaller number of underrepresented communities, particularly African American and Hispanic communities."

In the CHIMES Study, Hendin says that the researchers “are going to actively try to change the culture and create a study to look at the biology and characteristics of MS in African American and Hispanic patients and how our agent works differently depending upon the population.”

Mitzi Joi Williams, MD, a board-certified neurologist and founder of the Joi Life Wellness Group in Smyrna, Georgia, sees a diverse patient population. She tells Verywell that the researchers will solicit input from participants living with MS to better understand the impact of the disease on their daily lives.

“We don’t have a lot of information about MS in the Black population, but we have evidence that suggests that it is more aggressive in the Black population,” says Williams. “Walking disability may occur up to six years earlier than counterparts of other ethnicities. They have worse visual problems, are admitted to nursing homes sooner, and their mortality is higher at younger ages."

According to Williams, researchers have "seen this data over time," but they "don’t understand what’s causing these discrepancies." Therefore, the CHIMES Study is "a good opportunity to learn more in a controlled setting.”

How the Study Will Work

The researchers are seeking to enroll about 150 MS patients—half Black and the other half Hispanic American—who are not currently taking an immune modifying medication.

The participants will receive two doses of ocrelizumab (300 mg by IV) given 14 days apart. They will then receive a 600 mg IV dose of ocrelizumab at 24 and 48 weeks.

The researchers will follow the study participants for one year using several markers of disease progression:

• Magnetic resonance imaging (MRI) is the gold standard for diagnosing MS and assessing the progression of the disease. MRI imaging gives medical providers details on how much damage to the nervous system has been done by MS.
• Biomarkers in the blood can also provide insight into MS progression. One key biomarker in progressive neurological disorders is the neurofilament-light chain (NF-L), an end product of nervous tissue breakdown. While not used in everyday practice, the CHIMES researchers will measure NF-L in the study participants.

Benefit of Earlier, More Aggressive Treatment

Neurologists used to start with moderate treatment for MS, then escalate care as a patient’s condition got worse—but that's no longer the standard.

Today, healthcare providers are more likely to start patients on more aggressive medications like ocrelizumab to prevent or delay the irreversible damage that's caused by MS.

“We have the most opportunity to do good by treating early and effectively,” says Hendin. “The progression of MS is tied to the failure to prevent damage early in the course of the disease. The earlier we begin and use highly effective agents, the less likely we will see progression and disability.”

A Patient's Perspective

Over six years, Azure Antoinette, who is Black, experienced a succession of unexplained, troubling symptoms: difficulty writing, trouble holding things, tingling, and loss of sensation. Then, she became seriously ill with what doctors thought was an inner ear infection. In her early 20s, Antionette lost her ability to walk.

She visited multiple doctors and six different hospitals looking for answers. Eventually, an ER physician suggested that she may have MS, which finally gave her a diagnosis to explain her symptoms.

Today, Antoinette is a fierce MS advocate—particularly for minority patients. “MS disproportionately affects Black people more severely than any other race,” Antoinette tells Verywell. “Not only is it bad on its own, but our symptoms are more debilitating. The Black experience of MS is uniquely different from the rest of the population.” 

Antoinette speaks publicly about the urgent need for greater minority representation in MS research. “We need advancement, resources, and solutions for living with this disease, but before we get these things, we must have urgency and widespread representation about MS—not just for the disease, but for the disparities and the difficulty in managing a condition that continues to prove elusive."

That representation starts at the clinical trial level.

"The only way that we can get ahead is to study and gain more knowledge, but we cannot gain more knowledge if we don’t have minorities included in studies," Antionette says.