Addressing MENA Health Equity Gaps in Michigan and Clinical Research - Experience from the Pharmaceutical Industry (Genentech, a member of the Roche Group)
Publisher’s Note: This blog comes from community partners in the pharmaceutical industry that successfully fought for clinical MENA data collection.
To make healthcare fair for everyone, we first need to be seen. For too long, people of Middle Eastern and North African (MENA) descent have been practically invisible in the U.S. healthcare system. Neither category is included in most official paperwork, like the U.S. Census and medical research forms. As a result, MENA individuals are usually grouped into broad categories like "White,” “Asian,” “Black”, or "Other."1,2
Yet, data shows that the MENA population deals with high rates of cancer, mental health struggles, heart disease, and diabetes.3-6 When speaking to a handful of local physicians, they also report a high number of autoimmune diseases. Despite these serious facts, there is very little research focused on the health habits and medical needs of the MENA community.3, 4, 7
This issue hits close to home for us, two Genentech Medical Science Liaisons, who are of MENA descent and based in Michigan. We know that being left out or mislabeled in medical research can create hurdles to care, because when individuals are miscategorized, their unique health conditions or circumstances can stay hidden, making it difficult to get individualized care.
Addressing the Data Void
Having noticed that our own clinical trial forms did not separately categorize people of MENA descent, we sought input from physicians in the MENA community in metro-Detroit. They confirmed our suspicion that members of this community felt unrepresented, and believe that establishing these separate categories is a crucial first step toward closing the unique health gaps that affect the community.
Armed with that information and supported by public health findings in the federal Health Equity & MENA Community Inclusion Act8 which highlight how breaking down health data into specific groups is essential to unmask hidden disease burdens, we worked closely with our Population Science and Health teams to demonstrate the scientific necessity of collecting distinct MENA data. Together we advocated for, and successfully implemented the Middle Eastern and North African categories on Roche/Genentech global clinical trial forms to support drug safety, representativeness, and accurate clinical outcomes. This shift means MENA patients will no longer be lumped into other categories and instead, researchers will now be able to collect accurate data specific to these patient populations.
By working with company leaders, we are continuing to push for more. Over the past few years, we had a great opportunity to share this knowledge. Our colleagues in Michigan and nationally called the discussion "eye-opening." We explained how education, culture, religion, trust, and access to medical screenings all affect patients in our community.
A Strategy for More Equitable Access
We are happy to work at a company that shares our passion for closing gaps in care, and improving health for communities that have been traditionally left behind or unseen. Genentech’s mission goes beyond creating medicines. We know that medical progress doesn't mean much if it doesn't reach the people who actually need it, and it can’t do that if people don’t feel like the research applies to them.
Because of this, Genentech has made Population Health9 a core part of our mission. By bringing together science, policy advocacy, and community teamwork, we are fighting to minimize healthcare gaps and build a healthier future for everyone.
As a global leader in research, Roche/Genentech is in a perfect position to lead the way, with changes like this, to close the healthcare gaps in communities that have been largely invisible. This is a call to action to look past "one-size-fits-all" solutions. We need to make sure that every single person is truly seen, represented, and supported by the healthcare system of tomorrow.
Our work is far from over and we look forward to continuing the conversation.
About the Authors:
Idan Hannawa, PharmD, BCPS, is a Senior Medical Science Liaison for Genentech.
Lenore Tominna, PharmD, MPH, is a Medical Science Liaison for Genentech.
References:
1. Ennis, S., Porter, S., Bhaskar, R., Fernandez, L., & Tiv, M. (2024). Examining racial identity responses among people with Middle Eastern and North African ancestry in the American