
Historically, corporate philanthropy in the biopharma sector has focused on patient outreach and education, and funding programs that help increase access to treatment and care. While these efforts are critically important, to truly improve health care in the United States, the biopharma industry needs to confront the systemic and structural barriers to health equity. Doing so will require engaging in more inclusive research, and building a more diverse and multicultural scientific and medical workforce. The first step to meeting this daunting challenge? Invest in addressing the root cause of health inequities: racism.
Systemic racism prohibits access to the essential building blocks of health and well-being, from safe neighborhoods and environments to educational and economic opportunities.[1] Racism also increases risk of exposure to conditions that harm our health, like poor quality housing and environmental toxins, and can even “get under the skin” by increasing the risk of developing certain diseases and changing the way genes are expressed.[2] Structural racism and unconscious bias impact health care delivery and can result in poorer clinical care for people of color,[3] beliefs about the suitability of people of color to participate in clinical trials and subsequent withholding of opportunities,[4] and a “two-tier” health care system divided along racial lines.[5] Lack of diversity in the scientific and medical workforce — itself a result of systemic racism — also blocks pathways into STEM education and careers for people of color and inhibits health care workers’ ability to recognize and respond to these forces of oppression and provide empathetic and effective care.
In 2019, Genentech — the world’s first biotechnology company — established the Health Equity & Diversity in STEM Innovation Fund to get at the root of these problems by tackling long-standing inequities in both the health care and education systems. To do this, the Fund provides catalytic support to individuals and organizations that are pioneering new, often untested approaches that have seen little investment to remove barriers to high-quality care and inclusive research for people of color and transform pathways into STEM careers at the undergraduate and graduate levels and beyond.
To date, Genentech and the Genentech Foundation have invested more than $21 million in the Fund as part of nearly $160 million in funding over the last five years to advance equity in health, STEM education, and within our local communities. We have also invested in diversifying our own clinical trials by addressing barriers to participation and advancing inclusive research.
The Fund prioritizes investment in leaders of color and multidisciplinary, diverse project teams — particularly those that direct resources and decision-making power to communities, patients, and students most affected by health inequities. Fund partners meet regularly to problem solve and build community. This approach supports the long-term sustainability of the people and projects funded and, critically, the majority of the grantees report that the award has enabled them to strengthen institutional capacity and systems to address inequities at their institutions.
The 2022 Fund will deliver at least $12 million in funding in early 2023. To date, more than 350 individuals and organizations have applied, with more than 94 percent of submitting teams led by people of color. The 2022 grantees will add to a growing group committed to the essential work of dismantling health inequities and diversifying STEM fields — read the stories of some of those grantees below.
1 & 2. Ensuring representation in clinical trials
Black women are 41 percent more likely to die of breast cancer than white women, but they are vastly underrepresented in treatment research. This is partly due to the Black community’s deep-rooted concerns and justifiable mistrust of the medical system. TOUCH, The Black Breast Cancer Alliance, Breastcancer.org, and others launched the groundbreaking #BlackDataMatters study to dig deep, get real, and better understand the barriers that prevent Black women from participating in trials. The study findings are now informing the equally innovative and successful When We Tri(al) movement to engage more Black women in clinical research.
“I’m on a mission to educate and empower our community with the necessary knowledge to advocate for ourselves within a medical system that too often fails us. We must advance the science. When We Tri(al) is a powerful Breastie call-to-action to change the game for breast cancer and Black women through participation in clinical trials.”
Ricki Fairley, CEO and founder of TOUCH, The Black Breast Cancer Alliance
The Participatory Action for Access to Clinical Trials (PAACT) program, another grantee, is also working to ensure cancer clinical trial participants reflect the patients impacted by the disease. PAACT is a collaboration between researchers at the Henry Ford Health System and the University of Michigan Detroit Community-Academic Urban Research Center and is guided by a Steering Committee of community organizations representing the Caribbean, African, and African American communities in the Detroit area. Researchers and Steering Committee members meet monthly to guide data collection from community members and health care providers to improve understanding of issues related to cancer clinical trial participation and to jointly develop a community engagement plan to increase Black enrollment in Henry Ford cancer trials.
For Zachary Rowe, executive director of the Detroit community group Friends of Parkside, the PAACT approach has been a refreshing change of pace.
“They’re listening to what we’re saying: If you want to have more African American folks involved in research, don’t bring us in at the end. It’s really simple. No research on us without us.”
Zachary Rowe, executive director of the Detroit community group Friends of Parkside
3. Building clinician empathy through virtual reality
Studies suggest virtual reality can increase empathy. Cognitive science research has found that exposing unconscious thought processes can mitigate clinician biases that may contribute to racial disparities in health care. With this in mind, Dr. Kelly Taylor and her team at the University of California, San Francisco are leading the Combating Unequal Treatment in Health Care Through Virtual Awareness and Training in Empathy (CULTIVATE) project, which evaluates how virtual reality learning modules can help build empathy among health care providers. The modules first put providers in the shoes of a BIPOC (Black, Indigenous, people of color) patient, allowing them to experience firsthand what it’s like to be on the receiving end of clinical encounters that feel disrespectful, scary, and uncomfortable. Then, for contrast, the final module takes providers through a positive scenario that demonstrates a respectful encounter and allows them to experience cultural humility.
“They get to see what it’s like to feel dismissed, or to have their clinician approach them with cultural humility — it’s an opportunity to walk a mile in someone else’s shoes in a very tangible way,” said Dr. Taylor. “Increasing this sort of understanding gives them a chance to provide better, more patient-centered care.”
4. Championing equitable funding for Black Principal Investigators
Black Principal Investigators (PIs) receive federal grant funding at roughly half the rate of white PIs with comparable academic achievement — a significant barrier to the success of Black faculty that can negatively impact their tenure.[6] That is why Dr. Omolola Eniola-Adefeso (University of Michigan) and her co-PI Dr. Kelly Stevens (University of Washington) assembled a group of 250+ women academics from departments across the country to champion more equitable research funding, including specific calls for action by federal agencies to address racism within their funding practices. With Genentech support, they have provided funding and mentorship to Black PIs previously denied federal funding for their work, allowing them to pursue critical cutting-edge biomedical research.
“One of the biggest pain points is not being able to compete fairly for federal funds,” Dr. Eniola-Adefeso said. “Genentech’s support is helping to close the racial gap in NIH research funding. That is innovative leadership.”
5. Advancing solutions designed with and for the community
The San Joaquin Valley has some of the most polluted air in the country, contributing to high asthma rates, particularly among children. That is why Dr. Rosa Manzo (University of California, Merced) has focused her research on improving health outcomes in the region, where she herself grew up. And it is why she is partnering with promotoras – lay health workers who also serve as cultural and linguistic brokers for their communities and who are experts on what the local population really needs. With Genentech support, Dr. Manzo has launched a program in which promotoras work with local pre-health undergraduate students and medical students to educate Valley residents on asthma management in a culturally sensitive, language-appropriate, and engaging way.
“Different approaches that may seem very simple can have a lot of impact,” Dr. Manzo said. “Rather than coming to them with a problem we’ve identified, we ask [the promotoras], what are the needs in the community?”
2022 Fund recipients will be announced in early February. To learn more about the Fund and Genentech’s giving overall, visit gene.com/good/giving.
References
[1] Williams, David R., et al. “Racism and Health: Evidence and Needed Research.” Annual Review of Public Health, vol. 40, no. 1, Apr. 2019, pp. 105–25.
[2] Roberts, Dorothy. Fatal Invention: How Science, Politics, and Big Business Re-Create Race in the Twenty-First Century. New Press, 2011.
[3] Vyas, Darshali A., et al. “Hidden in Plain Sight — Reconsidering the Use of Race Correction in Clinical Algorithms.” New England Journal of Medicine, vol. 383, no. 9, Aug. 2020, pp. 874–82.
[4] Niranjan, Soumya J., et al. “Bias and Stereotyping among Research and Clinical Professionals: Perspectives on Minority Recruitment for Oncology Clinical Trials.” Cancer, vol. 126, no. 9, 2020, pp. 1958–68.
[5] Yearby, Ruqaiijah, et al. “Structural Racism In Historical And Modern US Health Care Policy.” Health Affairs, vol. 41, no. 2, Feb. 2022, pp. 187–94.
[6] Stevens et al. Commentary: Fund Black scientists. Cell. 2021. 184:561-565.