The Importance of Latino Representation for Advancing Population Health

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This content is from the “Advancing the Science of Cancer in Latinos: 2024 Conference Proceedings.”

Demographics and Public Policy: Implications for Latino Cancer

Dr. Elena V. Rios is President & CEO of the National Hispanic Medical Association (NHMA) and president of NHMA’s National Hispanic Health Foundation.

Inequity in the healthcare system

Dr. Elena V. Rios
Dr. Elena V. Rios

Dr. Rios’s presentation began by focusing on the changing demographics in the US. By 2035, Latino individuals will make up 1 out of every 4 Americans, meaning that the future of the country is intertwined in the Latino experience. The current 63 million Latino individuals in the US make up 19% of the population; however, only 9% of oncologists are Latino, and only 1/3 of those are women. This is important in light of the high incidence of breast and cervical cancer in Latino communities. Furthermore, 20% of Latino physicians are over the age of 64, meaning retirement could make disparities even more pronounced.

Very few medical school faculty and clinical researchers are Latino as well. Only 10% of National Cancer Institute (NCI) trials are run by Latino researchers, and that number is only 4% for the US Food and Drug Administration (FDA). Furthermore, only 9% of cancer center directors and 4.5% of deputy directors are Latino, meaning fewer role models for the next generation.

Latino cancer patients face many barriers to care, with less insurance coverage, less access to screening, higher prevalence of uncontrolled cancer, and more chronic illness. Latino cancer survivors report lower quality of life and unmet supportive care needs. The language barrier also affects every part of the cancer care continuum. Policy changes are required to address community concerns such as education, poverty, food, housing, and transportation. Because of inherent bias in the healthcare system, patient advocates are needed.

Current policies

Public policy should focus on increasing trust in medical research and medical institutions, as well as increasing patient interest and confidence in effective new treatments. In terms of trial participation, paying community organizations to get involved could be effective. Generating biomedical knowledge is also important. Funding for engaging underrepresented populations in STEM fields is already available, from the US Department of Health and Human Services (HHS), the NCI, the National Institutes of Health (NIH), the Agency for Healthcare Research and Quality at the FDA, the National Science Foundation, the Department of Education, the Department of Energy, and the Department of Commerce. The Advanced Research Projects Agency for Health (ARPA-H), of which the National Hispanic Health Foundation (NHHF) is a member, makes pivotal investments in breakthrough technologies and broadly applicable platforms, capabilities, resources, and solutions with the potential to transform important areas of medicine and health that cannot readily be accomplished through traditional research or commercial activity. The HHS under the Biden administration has also enforced a new equity health plan, focusing on health equity across all agencies.

The National Hispanic Health Foundation

The National Hispanic Medical Association (NHMA) is a nonprofit started in 1994 with the mission of empowering Latino physicians and Latino-serving physicians to improve the health of Latinos. The NHHF is the 501(c)(3) arm of the NHMA that generates interest in research, initiates educational activities, provides executive leadership development, and organizes networking opportunities. The most important function of the NHMA is the initiation of health communications campaigns, which may address cancer, obesity, diabetes, heart disease, or others. Working with the American Cancer Society (ACS), for example, a congressional briefing is being organized, resources are being developed, networks are being connected, and newsletter campaigns are being initiated.

The NHHF, however, is focused more and more on clinical research, relying on the new partnership with ARPA-H to open the door to more opportunities for Latino participation in research. In the field of advocacy, the NHHF is working with the Congressional Hispanic and Congressional Black Caucuses to enact legislation that would ease barriers to Latino healthcare. In education, the NHHF offers the California Leadership Fellowship and the National Hispanic Professional Student Scholarship.

Finally, the NHHF has also focused on the development of a National Center for Hispanic Health Research, which is developing a repository of about 5,000 Latino physician principal investigators. This center is also involved in hosting clinical research symposia, webinar series, and a career pathway program to mentor medical students. Partners include the HHS, ARPA-H, Johnson and Johnson, Amgen, and Equitable Breakthroughs in Medicine Development (EQBMED). EQBMED is a 2-year pilot project funded by Pharmaceutical Research and Manufacturers of America (PhRMA) and led by Yale School of Medicine, Morehouse School of Medicine, Research Centers in Minority Institutions (RCMI) Coordinating Center located at Morehouse School of Medicine, and Vanderbilt University Medical Center. The project involves 10 clinical sites assessing how patients and providers can be trained to facilitate more diversity within clinical trials.

Policy programs such as the ones mentioned may be instrumental in addressing healthcare disparities in the US. The NHHF is leading the way in this effort, engaging with legislators, interacting with HHS, promoting research initiatives, and providing scholarships for a more equitable future in health research. The development of the National Center for Hispanic Health Research may provide the specificity needed to address disparities specific to the Latino community.

The All of US Research Program

Dr. Martin Mendoza was Director of Health Equity for the All of Us Research Program at the National Institutes of Health (NIH). He is currently Chief Health Equity Officer at the Centers for Medicare and Medicaid Services (CMS) and Director of the CMS Office of Minority Health (OMH).

Representation in clinical trials

Martin Mendoza of NIH
Dr. Martin Mendoza

The goals of Dr. Mendoza’s presentation were to share an overview of the deficiency of representation in clinical trials, review recent efforts to increase clinical trial diversity, and highlight the ways in which the All of Us Research Program is expanding these efforts. The underrepresentation of certain communities in biomedical research is startling. Minority populations make up 38% of the overall population, and that number is expected to reach over 57% by 2045. However, minority enrollment in clinical trials is less than 10%. Latino individuals in particular comprise 18.5% of the US population, but only 3.1% of NIH clinical trial participants nationwide, and 2.7% of FDA novel drug trial participants.

More recently, however, the US Food and Drug Administration (FDA) has taken some small steps forward in this area. In February of 2022 for example, and for the first time ever, an FDA advisory panel recommended against approving the application of an oncology drug because the diversity of the population in the trial did not match that of the US. The trial was conducted exclusively in China, which has a very different demographic than that of the US.

In another step forward, in October 2016, the FDA recommended that “a plan to address inclusion of clinically relevant subpopulations should be submitted [by sponsors] for discussion to the Agency at the earliest phase of development and, for drugs and biologics, no later than the end of the phase 2 meeting.” The basis of this recommendation was ultimately written into law in December 2022 by Congress.

All of Us

Another step toward equitable representation in clinical research is the All of Us Research Program. The All of Us Research Program is a historic, longitudinal effort to gather data from one million or more people living in the United States to accelerate research and improve health. By taking into account individual differences in lifestyle, socioeconomics, environment, and biology, the hope is that researchers will one day uncover paths toward delivering precision medicine – or individualized prevention, treatment, and care – for all of us. The All of Us Research Program is the cornerstone of the United States federal government’s Precision Medicine Initiative.

There are three pillars of the All of Us mission. The first is nurturing partnerships for decades with at least a million participants who reflect the diversity of the US. The second part is delivering one of the largest, richest biomedical datasets that is broadly available and secure. The third part of the mission is catalyzing an ecosystem of communities, researchers, and funders who make All of Us an indispensable part of health research.

All of Us has a deep focus on community, participant engagement, and researcher engagement and outreach. These goals are accomplished through the following strategies: building relationships, advancing engagement science and application, and engaging to retain.

The All of Us research program is committed to returning value to its participants. As of February 2024, over 254,000 participants have been invited to see their genetic ancestry and trait results, over 171,000 participants have viewed their genetic ancestry results, and over 168,000 have viewed their genetic trait results.

Genomic health-related results are also available, with the program currently looking for genetic variants in 59 genes associated with serious health conditions and analyzing 7 genes that can affect how bodies metabolize medicines. Over 217,000 participants have been invited to view the health results generated. Over 94,000 have viewed hereditary disease risk results, and over 89,000 have viewed pharmacogenomics results. In fact, the All of Us program is now notifying over 5,000 participants per week of the availability of their health results.

The All of Us Research Program is making great strides not only in collecting data from a diverse population, but also in sharing that data and making it available to other researchers. Much information has already been gleaned from this data, including the effects of birthplace on liver cancer rates among Latino individuals, which can provide insights into health disparities and how to solve them. With this wealth of continually growing and diverse health data, many more discoveries are on the horizon.

Explore More:

Cancer, Clinical Trials

By The Numbers By The Numbers

142

Percent

Expected rise in Latino cancer cases in coming years

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