Working Toward a Healthier Future for Us All: Arab Americans and Inclusionary Medical Research

posted on: May 16, 2019

SOURCE: PRESS & GUIDE

BY: FARAH ERZOUKI

For years, Middle Eastern and North African (MENA) communities in the United States have been underrepresented in almost all sectors. And we’ve suffered the consequences.

Earlier this year, we learned that, once again, there will be no MENA category included on the 2020 U.S. census. This means our community won’t be adequately accounted for in one of the most important data collection exercises in our nation.

Unfortunately, lack of MENA inclusion in the U.S. extends far beyond the census. Access to quality health care and — critically — inclusion in biomedical research for MENA communities are areas we at the Arab Community Center for Economic & Social Services (ACCESS) are particularly passionate about.

Viewing MENA populations as “white” or Caucasian limits the level of disaggregated data available on the unique health challenges within our communities. Medical research programs often leave us out, resulting in the lack of development and administration of treatments that are tailored to our needs.

One year ago, I wrote a column for The Press & Guide about a research program doing things differently, titled Arab American inclusion in medical research is vital. On May 6, 2018, the National Institutes of Health launched the All of Us Research Program. All of Us is a historic effort to gather data from 1 million or more people living in the U.S. to accelerate research and improve health.

Ultimately, the program hopes to further precision medicine — treatments and prevention strategies that take into account individual differences in lifestyle, socioeconomics, environment, biology and more.

What’s unique about All of Us is that it also includes a specific MENA category, along with several other subcategories, so our communities can truly be accounted for. An ambitious but necessary program goal is to have 75% of volunteers come from communities that have been historically underrepresented in biomedical research, like our own.

Once complete, the program will have created the largest and certainly most diverse research cohorts in U.S. history, bringing us a little bit closer to understanding the complex and dynamic needs of our community and those of other historically underrepresented populations in the United States.

As the largest Arab American community non-profit in the United States, ACCESS was excited to get involved with All of Us over a year ago. We knew all too well that the stakes are simply too high for us to sit on the sidelines of an effort not only groundbreaking, but truly inclusive. We set out to educate Arab Americans about the importance of their voices being heard, encouraging them to participate in the program.

Over the last 12 months, we’ve been hard at work getting the word out about the program at both national and local levels.

Last September, we hosted our 8th Arab Health Summit in Washington, D.C., bringing together more than 400 health professionals and advocates from around the world. Ahmed Elmi, a health communications specialist with All of Us, participated in a panel focused on health advocacy and equity. Dara Richardson-Heron, the program’s chief engagement officer, delivered a keynote address on conquering Arab health disparities and the importance of our community’s involvement in medical research.

At home in Dearborn, we’ve forged a partnership with the Henry Ford Health System — a member of the All of Us health care provider organization network — where individuals can enroll. Together, through several co-hosted pop-up events, we’re working to bridge the gap between awareness of the program and actual enrollment, bringing more members of our community into the fold.

In year two of the program, each one of us at ACCESS looks forward to continuing our work on behalf of the program and expanding our outreach. All of Us has grown to include more than 180,000 registered participants (twice the population of Dearborn!), and as it continues to grow, our team will bolster our national advocacy efforts and forge new partnerships to ensure that Arab American voices are heard, and that we will continue to be included in this historic effort.

To learn more about the program and how you can enroll, visit JoinAllofUs.org/together.

Farah Erzouki is the public health manager for ACCESS Community Health and Research Center in Dearborn.