Several years ago, our researchers, clinicians and executives came together to discuss a moral and scientific problem that we had acknowledged, but remained glaringly unaddressed: the health equity gap. A lack of access to diagnostics, vaccines and treatments—as well as low rates of participation in clinical trials—has created a healthcare system that simply does not work equitably for everyone. For too long, Black, Latinx, and other marginalized patient communities have been underserved by the healthcare system and, as a result, face disparate health outcomes.
The coronavirus pandemic has painfully deepened and highlighted these inequities and shined a light on how much further we have to go. Together with policymakers, our industry must now drive forward solutions to address these disparities on behalf of patients.
A key priority of our US and global efforts at Genentech has been to reduce disparities in clinical research participation and ensure that the patients in our trials mirror the patient populations who experience that disease. Unfortunately, the genetic data available today does not reflect the diversity of our global population: Approximately 90% of genomic material available is of European ancestry. In order for us to deepen our understanding of diseases and develop more personalized treatments, we must have more complete information and study a broader population, including underrepresented communities of color.
Additionally, as the COVID-19 pandemic has tragically reinforced, we must address the systemic distrust among patients of color in order to usher in a new era of health equity. A recent study we conducted with medically disenfranchised patients found that around one-third of individuals do not participate in clinical trials, get vaccinated or get tested for medical conditions due to lack of trust in the healthcare system.
- Approximately 90% of genomic material available to scientists is of European ancestry
- 52% of medically disenfranchised patients believe that the healthcare system is rigged against them.
- 2045: When the U.S. will be a minority-majority population
Change Is Possible
We all need to drive meaningful change across the industry. To that end, there have been several key actions we have taken to expand our focus on health equity, including:
Addressing Inequity in Clinical Trials
- Our Advancing Inclusive Research® initiative was created to broaden the inclusion of historically underrepresented groups in clinical research and to ensure that personalized health care tools are designed for all patients.
- We also established the Advancing Inclusive Research Site Alliance with four founding site partners to take a practical and focused approach to expanding diversity in real world clinical trials. These research centers were selected based on their expertise, prior success in reaching urban and rural populations and patients of color, and desire to make swift progress in clinical trial diversity and health equity.
- We’ve assembled an external council of leading experts in the field who are collaborating with us to find solutions that will help tackle systemic barriers and increase health equity and access to investigational medicines.
- We launched a global, Phase III trial (EMPACTA) early in the pandemic for patients hospitalized with COVID-19-associated pneumonia, and focused on primarily enrolling patient populations that are often underrepresented in clinical studies.
Driving Health Equity via Our Giving
- Genentech invests in groundbreaking solutions and essential patient support to promote health equity and create a more diverse future of science. In 2020, we invested $90 million—our highest annual contribution to date—in these areas.
- Our investments support the work of non-profit partners to reduce barriers to participation in clinical research, ensure that patients facing the greatest disparities receive high quality care, and support careers in science and medicine for historically underrepresented communities.
This is just a start. We recognize an enormous opportunity to build on these efforts not only by individual action but also via collective thought, and to partner with the Biden Administration to power real change.
Creating a Healthcare Ecosystem that Works for All
We are encouraged by the increasing recognition of inequities in healthcare and some recent legislative action, including an assessment of barriers to clinical trial participation (the Henrietta Lacks Enhancing Cancer Research Act of 2019) and efforts to bring Medicaid coverage of routine clinical trial costs more in line with Medicare and private payer coverage. Our industry is also proud to commit to conducting rigorous studies in a way that is accessible to all, as is reflected in our collective principles on conducting clinical trials.
But health inequities aren't limited to clinical trial participation. We must address the language, social, and cultural barriers that have made healthcare provider visits, screening and diagnostics, trips to the pharmacy, and countless other critical interactions with the healthcare system impossible or mired in distrust for so many patients. We must work to ensure an equitable allocation of resources and sufficient provider networks in vulnerable communities. And, as telemedicine continues to take hold, we must close the digital divide that prevents patients in rural and low-income communities from accessing this vital resource.
Finally, we need to reduce patient out-of-pocket costs, especially for the most vulnerable patient populations, and where there are fewer protections. As we look toward developing policy solutions to address health disparities, it’s critical that we revisit programs like 340B to ensure it improves access to underrepresented and underserved populations. Genentech strongly supports this important safety-net program, but we believe reforms are needed to make sure it benefits the patients who need it most.
It is incumbent on all of us to develop actionable solutions to address immediate roadblocks to care as well as systemic inequities. One of the most impactful lessons from the COVID-19 pandemic has been to see what is possible when we work together, with the patient directly at the center of the solution. It is now time to take that same approach and mindset to again work collectively and build a healthcare ecosystem that provides the highest level of care and equity for all patients.
Fritz Bittenbender is Senior Vice President, Access & External Affairs for Genentech. In this capacity, he has oversight of Genentech’s pricing, contracting, and distribution strategies; external partnerships with associations and patient advocacy groups; and federal, state, and local government affairs teams.
Quita Beeler Highsmith is Vice President and Chief Diversity Officer for Genentech. She is responsible for leading Genentech’s D&I strategy, including recruiting, retaining and developing diverse talent, investing in initiatives to support science education, and addressing barriers in clinical trial participation via Advancing Inclusive Research.