Breaking Through Cultural Barriers to Enable Better Multiple Sclerosis Care
Jennifer Kim, Pharm.D.
Mitzi Joi Williams, M.D., FAAN

Nearly one million Americans are impacted by multiple sclerosis (MS). Once believed to be a disease that predominantly impacted young, White women, research has found that MS may be much more common in Black/African American and Hispanic/Latinx people than previously thought — and their experience may differ. In fact, some studies have suggested Black/African American and Hispanic/Latinx people living with MS may experience more severe symptoms and greater physical disability, yet they have been historically underdiagnosed and undertreated.

Mitzi Joi Williams, M.D., FAAN, a board-certified Neurologist and MS specialist at the Joi Life Wellness MS Center, has witnessed how the MS experience can differ for Patients of Color. "Cultural and institutional barriers may affect the way individuals interact with the healthcare system. For example, if a patient questions themselves about the utility of going to the doctor, and when they do, the doctor dismisses their concerns, it reinforces mistrust and may decrease future interactions," says Dr. Williams. A delayed diagnosis interferes with starting earlier on a high-efficacy disease-modifying therapy that may help to slow the progression of disability, an important goal of treating MS.

To help overcome these barriers, Genentech is applying an integrated and multidisciplinary approach. Our commitment to inclusive research is embodied in Characterization of Ocrelizumab in Minorities With Multiple Sclerosis (CHIMES), the first-ever clinical study to focus exclusively on Black/African American and Hispanic/Latinx people living with MS. We are also focusing on improving our understanding of health disparities and taking action to improve them.

Deepening Our Understanding

We are enabling data-driven decisions in project MS DECODE (Discerning Ecosystem Care Outcomes and Drivers), a tool launched internally in 2022 to identify and quantify the drivers of health inequities along the MS patient care continuum (e.g., diagnosis, treatment, adherence) in the U.S. When we better understand the myriad factors that influence care, we can bring resources that may have the greatest potential impact.

MS Community Outreach, Education and Support

In November 2022, we convened MS Advocacy Groups to discuss health disparities within the MS community, identify gaps in educational programs, and brainstorm shared opportunities to engage Black/African American and Hispanic/Latinx communities, as well as people with disabilities.

We are spreading awareness through initiatives like #MSVisibility that recognizes diversity in MS and provides culturally-relevant resources, including information about the importance of patients working with their doctors for early diagnosis. In 2022, we launched a Spanish-language landing page for the Hispanic/Latinx MS community titled "La Experiencia Hispana/Latinx con La MS." In January 2023, we launched new #MSVisibility content focusing on the Black/African American MS experience and unique challenges to care the community faces.

We have also devoted additional resources to support non-English speaking patients who have been prescribed our medications, specifically by increasing the size of our patient access programs with non-English preferred staff by 75% to support Spanish language speakers.

Genentech is committed to continuing to listen and learn about the unmet needs and unique barriers to care of communities of color.

At Genentech, we understand health inequities are complex and cannot be solved overnight. We aim to do our part to combat this reality and work with patients and other stakeholders to ensure we're engaged on this critical issue.
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