Last week, the Centers for Disease Control and Prevention (CDC) made its recommendations for how best to distribute the two new COVID-19 vaccines that are expected to get the Food and Drug Administration’s (FDA) emergency authorization approval in the coming days. As anticipated, their recommendations focus on getting the vaccine first to health care workers and other frontline staff who care for populations most at risk of illness and death from COVID-19, followed by senior citizens; people with other comorbidities, such as heart disease and diabetes; and then down the line to everyone else.
Over the past year, there has been considerable reporting on the rise of vaccine skepticism by the American public. Some of that reporting has focused on what role medical mistrust among Black people will mean for our willingness to get the vaccine once it becomes available, in light of the fact that Black people in America are far more likely than whites to contract COVID-19 and die from it.
In recent weeks, Health and Human Services (HHS) Secretary Alex Azar has said publicly that the federal agency is preparing a public education campaign to explain to the public how the vaccine works, what it does in the body, and the process for getting vaccinated. I agree that we need such an educational campaign; for one, so as to not leave people reliant on the opinions of their favorite pop star or social media influencer for critical information regarding their health. But it’s also true that public health experts and federal agencies must think beyond the current COVID-19 crisis. We have to begin to reinvest and reimagine public health to empower more people to make decisions based on the best available evidence, not rhetoric from anti-science religious zealots, right-wing populists, or even Black “natural” health gurus who think a vegan diet is the cure-all for infectious-disease pandemics.
But whatever the root causes, we’ve got to figure it out. And trying to do so in the middle of the worst pandemic in 100 years (which, in the end, may top the 1918 flu pandemic) is a terrible way to do public health. If we are to see this pandemic through—and be in better shape to deal with the next one—here are four key actions that need to happen in the coming months.
Invest in Research to Understand Medical Mistrust ...
There are many levels to—and a complicated history behind—medical mistrust in America. Mistrust among Black folks can be traced back to the story of Henrietta Lacks or the Tuskegee Syphilis Study, among other horrific abuses and experiments. There are stories of forced sterilizations of primarily Black, Indigenous, and Latinx people; people with disabilities; and sometimes even poor whites dating back to the early 1900s. But there’s also medical mistrust based on the present-day realities of being Black and trying to get quality health care without your concerns being ignored or being condescended to by providers or administrative staff.
Then there are the conspiracy theories—which go beyond mistrust. These speak to beliefs that there is active malfeasance on behalf of governments or companies to engineer diseases to kill specific groups of people, that vaccines and therapeutics are developed to inject unsuspecting people with various tracking or surveillance devices, and that public health is rooted in creating pretexts for massive social control. Some of these phenomena are caused by or exacerbated by historical truths, while some are caused by people wanting to center themselves as healers looking to make a quick buck. It’s also the case for many people that being anti-establishment and anti–any established set of facts or truth—whether one is a leftist or a right-wing conservative—becomes a kind of identity, a badge of honor to set oneself apart from the pack.
While these are all distinct phenomena that sometimes overlap, it stands to reason that we have very little research on understanding the biological, political, cultural, or social forces that explain medical mistrust. There is an urgent need for public health research portfolios at the National Institutes of Health (NIH), CDC, and other research agencies to increase funding for studies aimed at better understanding the basis for medical mistrust and health-related conspiracy beliefs. This includes research on the relationship between social media and the proliferation of misinformation that helps promote conspiracy theories, junk science, and the apparent growth of increased distrust of established scientific processes and public health protocols.
... And Then Invest in Solutions to Address It!
In addition to researching medical mistrust and conspiracy theories, there is an urgent need for funding strategies dedicated to addressing the issues outlined above as a regular and ongoing part of public health programs. The CDC, Health Resources and Services Administration (HRSA), and other grantmaking public health agencies should be tasked with funding demonstration projects that are aimed at cultivating community-driven strategies to address public health, biomedical research, and health care–related mistrust, misinformation, and conspiracy theories.
Many of us who’ve worked in HIV prevention and care at the community level have had to create responses to theories that the government or pharmaceutical companies have a cure and are keeping it out of the reach of those who stand to benefit from it. Trying to explain to a layperson the role of the NIH, biotech vs. pharmaceutical companies, and regulatory agencies like the FDA is near impossible at a time when people are in a state of sheer terror about the current COVID-19 crisis.
To my knowledge, there is currently no toolkit, training, or support that exists at the federal level to help frontline public health workers engage and address these issues as they arise. In the case of COVID-19, it may be that community-based HIV organizations are already best positioned to do this kind of work, given their relationships to other community institutions where they often carry out prevention education, HIV testing, and linkage to care or pre-exposure prophylaxis (PrEP) services. But who offers this kind of training to the public health workforce? Is it taught in public health, nursing, or medical school programs?
Making science and public health institutions and regulatory bodies more transparent about their processes and teaching the history of medical racism, sexism, homophobia, and transphobia are essential to building and cultivating public trust. The CDC has to allow for (or perhaps hire) communications experts to develop new and novel approaches to break through to audiences, particularly those on social media. Often the current messaging is frankly stodgy, boring, and not engaging enough to compete with the snark and quippy nature of social-media communication styles.
Put Black Medical Providers, Researchers, and Policy Experts at the Center
One of the major reasons medical mistrust persists in Black communities in the U.S. is that, despite the presence of Black medical doctors, researchers, and infectious-disease experts and activists, we are very rarely called upon by mainstream press or even social-justice organizations to speak to the public about health-related issues (like COVID-19). I personally complained to friends who run social-justice organizations that were holding online events this year about racial disparities and COVID that often featured no epidemiologists, researchers, medical providers, or public health activists who could offer the perspective needed to communicate the current medical research on COVID-19 and vaccination and help break through the mistrust.
And it’s not just government agencies that need to shift their thinking. Most racial justice–focused philanthropy in the U.S. has largely focused on racial disparities in the criminal justice system, almost to the exclusion of everything else. So despite the numbers of Black people who die prematurely due to political and social forces that put us at very high risk of illness and disease, and the persisting racism in health systems that mean we often receive low-quality health care, there are very few funders who are willing to fund the kind of organizing, base building, and political-education campaigns to empower Black communities to fight on these fronts. In other words, Black Lives Matter—but not just when we die at the end of a police revolver.
Many racial-justice funders have been generous in moving money to organizations in need of COVID-19 relief for their workers or staff, but many of these funders have been totally absent from funding grassroots, community-based organizing efforts urging more accountability from health care systems, public health, and biomedical research. This work has mostly been left to the most underfunded, scrappy conglomeration of Black activists doing work around drug policy and harm reduction, HIV, disability, and reproductive justice—activists who rely on a small handful of dedicated funders. Funders should be looking in the mirror and asking themselves why the anti-mask/anti-vaxxer white nationalist groups have out-mobilized the Left on public health to the extent that governments are curbing smart public health strategies in order to appease these groups.
Start Making Changes in the Public Health Sector
Lastly, public health is due for its own reckoning. Like most institutions in the U.S., it still suffers from white paternalism, is obsessed with behavior-change strategies (over and above systemic forces that shape the health-related decisions people are actually empowered to make), and still operates in a way that resembles aspects of our policing and carceral systems. For example, epidemiology still refers to its efforts to track health conditions as “surveillance.” HIV and disability-justice activists have probably been the most vocal about pushing public health authorities to use “people first” language and to stop referring to people as “infected,” “spreaders,” “defaulters,” or “noncompliant.”
We have to not only reinvent the language we use, but be willing to reimagine strategies around contact tracing and partner notification. The current strategies have resulted in people being fearful of engaging public health entities, especially when biometric companies are already positioning themselves to be the solution to getting out of lockdown—offering many more ways for people’s human rights to be violated and data collected by unaccountable profiteers.
Instead, we should more readily bring the kind of bioethics frameworks and protocols that exist in biomedical research into public health practice. Doing so would be a useful tool to help shift public health institutions into thinking more critically about how their practices do or do not align with a human-rights approach.
As a public health community, we have a lot of work to do. We will roll out vaccines, and I think most people will eventually come along to take them. And while COVID may become a disease of the past, we can’t rest on our laurels. We’ve got to do the ongoing work to transform the role of public health—make it visible and relatable to people—and Black public health practitioners have to play a leading role, especially where our communities are impacted.
I’m hoping new leadership in the federal agencies will make this possible. I am also hoping my fellow social-justice warriors who have long ignored HIV and other public health issues will continue to see us as allies in the work of building the world and society that we all want to, and can, live and thrive in.