PhRMA’s new Principles seek to Further Health Equity: A Q&A with PhRMA’s Senior Director of Policy and Research | Deloitte US has been saved
By Alexandria Younossi, principal, Deloitte Consulting LLP
It has been two months since the Pharmaceutical Research and Manufacturers of America (PhRMA) published its first-ever industry-wide principles on clinical-trial diversity.1 The trade group’s new voluntary principles, which are slated to take effect in April, are part of a broader initiative to improve health equity for ethnic and minority populations. I recently spoke with Courtney Christian, a senior director of policy and research at PhRMA, to learn more about the principles and what pharmaceutical companies are doing to improve diversity among their employees and build trust within communities of color. Here is an excerpt from that conversation:
Alexandria: Diversity, equity, and inclusion are issues that pharmaceutical companies have been discussing internally for years. What was the impetus for equity becoming a top priority for the industry now?
Courtney: The death of George Floyd in Minneapolis last summer accelerated our equity agenda and the work the industry had, previous to that event, been undertaking to improve our practices and culture to reflect what it means to be a diverse and inclusive workplace. His death highlighted conversations that have long been had, most particularly in the Black community, around racial injustice, and the lack of equal access to quality health care, which is rooted in systemic racism. Stephen Ubl, our president and CEO, is from Minneapolis. Floyd’s death really hit home with him. Leadership at many of our member companies had a similar visceral reaction. At the same time, COVID-19 was having such a disproportionate effect on Black and Brown communities that you couldn’t look away. We knew that, as an industry, we needed to step up our ongoing effort to be better corporate citizens in communities of color. Mr. Ubl, and other CEOs in our industry, signed the CEO Action Pledge early last year to show PhRMA’s ongoing commitment. The Pledge was created and driven in large part by the reaction to the killing of Botham Jean, who was murdered by a police officer in his own home.2
Alexandria: Were pharmaceutical companies working to improve health equity before George Floyd’s death?
Courtney: Yes. Our organization and our member companies have been aware of health inequity and have been putting research and resources into addressing it. But the death of George Floyd, along with the deaths of Breonna Taylor, and many others more recently, drove our industry to accelerate its efforts. Our member companies have become more aware of the impact that they have and of their footprint in communities of color. We are working collectively to improve health outcomes.
Alexandria: How has COVID-19 impacted Black and Brown communities?
Courtney: Black and Hispanic communities are contracting and dying of COVID-19 at disproportionate rates compared to white Americans. The Indigenous community, Asians and Pacific Islanders have been hit hard as well.3 That is not to discount the impact on white Americans, but the evidence is overwhelming that the pandemic has highlighted health inequities in communities of color. Health inequity is an issue that has haunted this country for hundreds of years. Many modern-day medical procedures were refined on enslaved people.4 You can draw a direct line—from then to now—in communities of color. Where we live, where we work, where we play, along with environmental issues, all have a profound effect on health outcomes. COVID-19 underscored those issues.
Clinical trials are becoming more diverse
Alexandria: Consumers typically don’t know much about the clinical trials that companies use to test the safety and efficacy of the vaccines and medicines. But the development of COVID-19 vaccines caused people to pay closer attention to diversity in clinical trials. Is that changing how pharmaceutical companies recruit participants?
Courtney: Our companies have always tried to ensure diversity among clinical trial participants, knowing the importance of diverse representation in trials. Enhancing meaningful representation of diverse participants in clinical trials helps provide information about drug response and measures of safety and efficacy in populations that have been historically under-represented and under-studied. The search for a COVID-19 vaccine has spurred consumers to seek more transparency in drug development. They want more data and they want to know that people who look like them were represented in the clinical trials of the medicines they use. Lack of participation of patients from diverse backgrounds may limit early access to potential therapies through clinical trials, especially in the setting of unmet medical need. That is one good thing that has come out of this pandemic. There is more conversation around the importance of clinical trials—particularly within communities of color, which historically have not had good representation in clinical trials for drugs that treat many of the diseases that affect them disproportionately. Ensuring that a wide diversity of patients are included in clinical trials will lead to studies better reflecting the patient populations most likely to use the product under study if it achieves regulatory approval. This conversation is important, and it needs to continue long after we move past the pandemic. Our recently released clinical trial principles focus on four main areas that will help our companies meet communities where they are:
- Building trust and acknowledging the historic mistrust of clinical trials within Black and Brown communities,
- Reducing barriers to clinical trial access,
- Using real-world data to enhance information on diverse populations beyond product approval; and
- Enhancing information about diversity and inclusion in clinical trial participation.
Alexandria: Let’s talk about the first principle—building trust. Why is there a distrust of pharmaceutical companies among Black and Brown consumers?
Courtney: Distrust runs deep in many Black and Brown communities…and it’s not just a distrust of pharmaceutical companies. There is also distrust of the government and of the health care system in general. A lot of this reflects systems of oppression, the historical record, and painful family stories that are passed down. My mother told me family stories coupled with her own experiences. I see some of the same issues at play in my own life and in the life of my 5-year-old son. If we are to break down these generational walls of distrust, everyone across the health care continuum has to act in a more transparent manner and be willing to answer hard questions and do the hard work to begin to build trust.
Alexandria: Will that distrust keep some people from being vaccinated against COVID-19?
Courtney: As COVID-19 vaccines are distributed, everyone is asking each other whether they will take it. I see the chatter about it and get many questions from friends and family. This is an important conversation in communities of color, and it’s where we have a lot of work to do. The only way to remove that mistrust is to have open and honest conversations as an industry. We need to step up our engagement strategies and meet people where they are in their communities. We need to demonstrate that everything has been done by the book and that no corners were cut in developing this vaccine. We need to demonstrate that we are here to help.
Alexandria: Could advances in digital health make it possible to encourage greater participation from diverse patient populations?
Courtney: Yes. In some cases, a person who would have had to drive to a medical facility or take time off of work might not have been able to participate in a clinical trial. One way of addressing this barrier when designing a clinical trial is to consider whether a digital technology, such as a mobile app or a wearable technology, could help encourage participation by gathering data from diverse patients who otherwise could not easily access a clinical trial site. But there is still a digital divide that separates some groups. In my opinion, we have to fundamentally think about how we change the infrastructure of this country. For example, virtual health isn’t an option for someone who doesn’t have reliable access to the internet. How do we make broadband more accessible to everyone—from urban centers to rural locations? Virtual health is a great advancement for medicine, but if it doesn’t work or isn’t accessible for everyone, then I wonder is it truly an advancement?
Pharma companies look to build a more diverse workforce
Alexandria: PhRMA is also encouraging its member companies to improve the diversity among their employees. What is the value of a diverse workforce?
Courtney: As a Black woman, I know first-hand that diversity among employees can give organizations broader and deeper perspectives. When you have a homogenous set of people around the table, you come away with homogenous ideas and viewpoints. Expanding those viewpoints with people who have different life experiences can lead to more diverse thinking. It is important that our member companies have a wide range of perspectives, including representation from all of the communities that we serve. I try to make the idea of equity personal. I recently included a picture of my five-year-old son in a slide deck. He has a congenital heart defect and uses our industry’s products. I want him to know that his mother’s industry is a welcoming place that appreciates her perspective and that it’s also an industry that is invested in his health, well-being, and future.
Alexandria: What are pharmaceutical companies doing to improve diversity among their employees?
Courtney: We are seeing all kinds of strategies that companies are developing individually. I know of one company that was able to significantly increase the diversity of its sales force by removing prior pharmaceutical experience from its job requirements. This not only helped them expand the source for their sales team, it also helped them bring in new and diverse perspectives.
Alexandria: What sort of a response have you been getting from you member companies?
Courtney: They have been very supportive. When we were developing our racial justice principles over the summer, we recognized that they would need to be meaningful, bold, and go beyond the typical corporate-speak. The leaders of our member companies have coalesced around them. It is critically important for our industry that we don’t lose momentum on these important conversations. Our companies are committed to this and I personally want to work toward this every day. We can’t ignore the historical record, but we can use the past to inform our future to do and be better. We have to be forward leaning and forward thinking in bringing forth patient-centered solutions that benefit the communities we serve.
Endnotes
1. PhRMA announces first-ever, industry-wide principles on clinical-trial diversity, PhRMA press release, November 17, 2020
2. Amber Guyger sentenced to 10 years for murdering neighbor Botham Jean, NBC News, October 2, 2019
3. COVID-19 Hospitalization and Death by Race/Ethnicity, Centers for Disease Control and Prevention, November 30, 2020
4. American medicine was built on the backs of slaves. And it still affects how doctors treat patients today, Washington Post, June 4, 2018
5. The Office of Justice for Sterilization Victims, a division of the North Carolina Department of Administration
