Why Multiple Sclerosis Hits Women of Color Harder—and What Needs to Change
When it comes to health, Latinas and women of color often find themselves at a disadvantage. Multiple Sclerosis (MS) is no exception.
While MS has long been seen as a disease that primarily affects white women, recent data tells a different story. Nearly one million people in the U.S. live with MS, and about 30% of them are Black and Latino. For Latinas, managing this complex, chronic disease comes with unique challenges.
FIERCE spoke with Dr. Lilyana Amezcua, a neurologist, and MS specialist, to dig deeper into how Latinas and women of color experience MS compared to other groups.
“Studies suggest that Hispanic/Latinx people living with MS may develop the disease earlier and experience greater disability compared to white people,” Dr. Amezcua shared. This isn’t just a biological issue—it’s often the result of social disadvantages, healthcare disparities, and cultural barriers.
Cultural Barriers and the Strain of Marianismo
Multiple Sclerosis disproportionately affects women, and it’s twice as common in women as it is in men. Latinas with MS also face added layers of cultural expectations, like marianismo, a traditional set of values where women are expected to self-sacrifice for their families. For women battling MS, this can be incredibly draining.
“Marianismo puts an even greater strain on women living with MS, given the inherent sense of self-sacrifice to her family and community,” said Dr. Amezcua. This constant emotional burden can delay a woman’s ability to prioritize her health and seek timely treatment, which is crucial for MS care.
Barriers to Proper Multiple Sclerosis Care for Latinas and Women of Color
One of the biggest challenges Latinas face is accessing proper care and treatment. The Genentech survey highlighted that 9 in 10 people with MS experience barriers to accessing the best possible care. For Hispanic patients, those barriers are often magnified by financial limitations and racial bias.
Dr. Amezcua explained that social determinants of health and cultural values like respeto, familismo, and fatalismo play a significant role in delaying MS care. Many patients, especially those in rural or suburban areas, face additional challenges like travel distance and language barriers. “Hispanic survey respondents were more likely to say financial limitations (33%,* vs. 23% White, 10%* Black) and their race/ethnicity (20%,* vs. 13%* Black, 4% White) are barriers to accessing the best MS care,” according to the Genentech findings.
The Urgent Need for Representation in Research
The healthcare community needs to do more than just acknowledge these disparities. Representation in clinical research is critical.
Dr. Amezcua pointed out that while Hispanic/Latinx individuals make up 18.5% of the U.S. population, they represent less than 1% of those enrolled in clinical drug trials for MS. “It’s imperative that resources for the Hispanic/Latinx community are accessible and culturally appropriate,” she stressed. Without proper representation in research, we cannot fully understand how MS impacts this community.
Delays in Diagnosis and the Lack of Multiple Sclerosis Awareness
One of the most dangerous challenges Latinas face is the delay in receiving a Multiple Sclerosis diagnosis. MS is progressive from the start. This means that without early diagnosis and treatment, the disease will continue to worsen over time.
The Genentech survey revealed that people living with MS report an average delay of 1.4 years from the onset of symptoms to an official diagnosis. During that time, patients often see more than two healthcare providers before they even receive a diagnosis.
For Latinas, this delay can be deadly. As Dr. Amezcua highlighted, “Research shows that starting on a high-efficacy disease-modifying therapy may help delay disease progression and preserve daily functions for longer.” But with so many Latinas unaware of the early symptoms of MS and unable to access the right resources, this window of opportunity often closes before they get the help they need.
Advice for Latinas Facing Multiple Sclerosis
Latinas and women of color living with MS must advocate for themselves in the face of these challenges. Dr. Amezcua recommends being as open as possible with healthcare providers and seeking out in-language resources when necessary. “If language barriers are a concern, seek out in-language resources and support to better understand the condition and treatment options,” she said.
Online education and support groups can also be valuable. Many patients turn to digital platforms to further educate themselves about MS and connect with others facing similar challenges.
“For patients, knowledge truly is power at the beginning of a disease like MS,” Dr. Amezcua emphasized. Understanding the disease and treatment options can make a world of difference, especially for Latinas who may develop MS earlier and experience more severe symptoms.
The fight against MS is not just medical—it’s cultural, financial, and deeply personal for Latinas and women of color. By breaking down the barriers to care, increasing representation in research, and raising awareness about the disease, we can ensure that women from all backgrounds receive the care and support they need to live fuller, healthier lives.
