Tanzina Vega: As Coronavirus death toll in the United States hovers around 200,000 Black, Latino, and native American populations have made up a disproportionate amount of that total with Black Americans, in particular, being more than twice as likely as white Americans to die from COVID-19. Many of the companies that are working to develop a vaccine so far have fallen short when it comes to recruiting people of color to participate in trials. As of late August, people of color only made up about one-fifth of the participants in trials being conducted by two major pharmaceutical companies, Medana and Pfizer. Some of the challenges in recruitment are connected to the legacy of racist experimentation on communities of color by white doctors in the United States. If the recruitment process isn't improved, the vaccines could end up overlooking key health disparities among different racial demographics in the United States. Joining me now to talk about this as Dr. Chris Pernell, public health physician at the University Hospital in Newark, New Jersey. Dr. Pernell thanks for being with me.
Dr. Chris Pernell: Good to be here.
Tanzina: Also with me is Dr. Hala Borno assistant professor of Medicine at UCSF. Dr. Borno welcome to the Takeaway.
Dr. Hala Borno: Thanks for having me.
Tanzina: Dr. Borno, we'll start with you. Where do we stand so far in the process of developing a vaccine for COVID-19?
Dr. Borno: Right now we're in the midst of phase three clinical trials across several vaccine candidates. we're looking in one, in particular, to enroll up to 30,000, that enrollment is actually happening at a fast pace, but as you just articulated the concern is whether or not that enrollment will be diverse enough. There's a lot of pressure right now to get an effective vaccine candidate to market, but alongside that pressure there is skepticism. Skepticism that has been with us for years, but which I think has been heightened.
Tanzina: Want to talk a lot about that skepticism in just a minute. Dr. Borno, there is an underrepresentation of people of color in COVID-19 vaccine trials. You have studied this, particularly among Black participants. What did you find?
Dr. Borno: I was examining the representation or the types of patients that were enrolling in COVID-19 treatment clinical trials, I really took an early look at that data to try to observe if the patients enrolling in these trials were reflective of the patients that were being disproportionately affected by the disease and what I observed with these early studies were the underrepresented Black patients across all the studies that were published to date. They were underrepresented relative to the burden of disease of that type of population in the cities in which these studies took place. We found that to be a very sobering conclusion. It was an early look that I think spurred even heavier push for the scientific discovery to really recruit patients who are reflective of the patients being disproportionately burdened by the disease.
Tanzina: Dr. Pernell, to that point, you decided to participate in a trial yourself. Why did you make that decision?
Dr. Pernell: It is a very personal decision, but it was my way to help honor my father's legacy and to help my sister in this fight. I lost my father to this pandemic when we say this pandemic has been devastating and when we say that it is disproportionately burdened Black and brown communities, I use my life as an example. I lost my father to the pandemic. My sister who's a breast cancer survivor is struggling to recover. She's what's known as a long hauler and if you step back from that and you think about it seeing that type of devastation and that being overlaid on this centuries-long skepticism that Black and brown communities have about the academic medical establishment about clinical research it drives and compels you to make sure we're articulating the story right and to make sure we're offering people the opportunity to be a part of the solution building process. That's what motivated me, that gave me my fire in the belly. I needed to live my accountability. I couldn't go with community and talk about clinical research and not just pushing a vaccine in particular, but just to make sure community is aware, informed, and engaged. I felt honoring my dad's legacy and me walking the talk and living out my accountability that that's something I needed to do.
Tanzina: First. Dr. Pernell. I want to express my condolences for your father's passing from COVID-19. I want to ask you what the experience is like to be part of a trial because I think we'll talk a lot about the skepticism and in just a moment that communities of color have towards the American medical establishment in particular, but for those who might be thinking about this or considering it, what is it like to participate in a trial like this?
Dr. Pernell: Informed consent is sacred. It's something I talk about a lot in community and I talk about self-efficacy, the ability to make an informed choice, a decision. I got lots of information. I personally have been following the developments around the pandemic following the developments around the vaccine trials. When I considered enrolling, you have to go through a screening process. As part of that screening process you're giving paperwork to read over, to ask questions, to make sure you understand clearly the risks versus benefits. It's emphasized that this is voluntary. It's not mandatory that you can withdraw your participation at any time with no negative repercussions. You're given a sense of awareness of how long the process will take, that you'll be followed for approximately two years. You're educated around what likely side effects you could experience and what to do in the event that you do experience any of those side effects. There are so many checks and balances in the process to make sure you clearly understand what you're choosing to do and to make sure you recognize and understand that if any point that this decision is no longer accurate and you want to remove yourself from the process, you're more than willing to do that. They check in with you daily, they do symptoms check. I have to enter information into an app that's on my phone. There's a lot of vigilance through the process and they actually feel like there's a companion through the process talking me through each step.
Tanzina: Doctor Borno, we've even heard from the Chief Executive Officer at Pfizer, who has made an appeal for more people of color to participate in these trials. How Dr. Borno, is that going to actually happen? You need to entice and explain to communities of color that are already being ravaged by what many people are calling a pandemic within a pandemic. It's not just Coronavirus, it's underlying health problems. It's people who are dying, disproportionate rates. I mean, there's so many things that are affecting, particularly poor communities of color that I don't see how we increase the participation of people of color in these medical trials.
Dr. Borno: Fears of experimentation and hereditary mistrust are certainly real and they absolutely need to be acknowledged. However, I don't think that investigators can say, "It's because the participants that we want to have enrolled in studies just don't trust us," and place the blame only on trust. It takes work, researchers and the science community has to do the work to help earn the trust. That takes engagement in the communities in which we hope to have participate in clinical research. It takes the development of high-quality health information and information about the science that is being conducted in plain language that can be accessible to everyone. It takes a lot of work. I think that if we just say, "It's about trust and of communities lacking trust." Then it blames the communities, but it's not only communities lacking trust, but it's the scientific community that needs to do the work to earn the trust. That work is hard, but it is important and the communities that we hope to have enrolled in trials deserve that we make that effort in order for them to feel assured that as they go through the scientific process, that they are looked after, that it is rigorous, and that it ensures their safety.
Tanzina: I'd like to end the segment by asking both of you to help us understand what happens or what could happen. There is a race for a vaccine, there are political reasons for that, but there are also just-- People want to live right now. We are facing something that's unprecedented. What could the outcome be if we do not recruit enough people of color for these vaccine trials considering that these vaccines are being developed at a rate that I think is unprecedented? There's an enormous amount of pressure for pharmaceutical companies to find the "Silver bullet" here, will they be able to do that in time and if they can't recruit enough communities of color to participate, what are the long term effects of that? Dr. Pernell.
Dr. Borno: If we can't recruit enough Black and browns to be a part of the vaccine trial and just clinical research in general we just perpetuate the inequity. We perpetuate the inequity that leads to healthcare disparities that we continue to see that these communities are plagued by and that will only deepen the mistrust. When we talk about a lack of trust we don't end there. We just center there because also accompanying a lack of trust is a lack of community empowerment. If we don't work on those two things in parallel and then we get a vaccine that hasn't been thoroughly evaluated in a diverse population, how do we say convincingly or how can we say that this is effective across the entire population? I think we're going to have an uphill battle around the uptake of the vaccine. Part of that has to happen with us taking several steps back. When I say empowerment we have to build relationships with these communities not just when we want them to participate in particular transactions like clinical research, but we must do a community participatory action. We must ask community what are your priorities? What would you like to see happen? All of that is going to be necessary for there to be effective participation across Black and brown communities and then effective uptake of the vaccine. That's what I'm remaining vigilant about. That's just a conversation we had in community last night. That's just being very real to what we face right now. Tanzina: Dr. Borno.
Dr. Borno: The clinical studies that are being conducted are trying to develop the science to prove that these vaccines are safe and these vaccines are effective. If we observe later on that they're only safe and effective in certain populations, just imagine that scenario. Imagine if certain communities are left vulnerable to the infection or are experiencing considerable toxicity or harm from the vaccine. That would be truly devastating and I think would certainly create even a worsening chiasm in our broken healthcare system. I think it is an imperative that these studies focus on recruitment of populations that would most benefit from the availability of this vaccine.
Tanzina: Dr. Hala Borno is an assistant professor of medicine at UCSF and Dr. Chris Pernell is a public health physician at University Hospital in Newark New Jersey. Thanks to you both.
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