Understanding and acknowledging history as we support people in their vaccine choices

Lamont D. Simmons, M.S.W., Ed.D. and Elspeth M. Slayter, M.S.W., Ph.D.

The following essay is the written accompaniment to a workshop to be given by the authors on February 26th, 2021 at the Justice Resource Institute (JRI).

Today, we are talking about vaccine choice for a range of communities, the disability community as well as a range of communities we will refer to as people who are Black, Indigenous, and other People of Color or BIPOC communities. And it’s important to remember that these communities have significant overlap too. Our approach to discussing the historical context around vaccine choice is intersectional, and we want to be intentional about that.

Image credit: Today illustrations/Getty images

Specifically, we are here to talk about how to understand and acknowledge history as we support the people and communities we serve in their choices around whether or not to receive the COVID-19 vaccine. To contextualize our conversation, we have to address the racial, ethnic, and disability disparities that exist in the current health care landscape. Let’s start by looking at race and ethnicity. According to the Centers for Disease Control and Prevention, Black and African American people, Latinx and Hispanic people, and American Indians and Alaskan Natives die of COVID-19 about two times as often as whites. Black and African American people have suffered one of the highest death rates from COVID-19.

COVID-19, with 1 out of 735 Black and African Americans dying from the disease, according to the latest data. For White Americans, that figure is 1 in 1,030. Yet White Americans are being vaccinated at rates of up to three times higher than Black and African Americans, as early data from the 23 states that are reporting racial and ethnic data on vaccinations show. In fact, across the U.S. there are reports of majority-Black and African American areas struggling to deal with nonresident White people traveling to their communities to be vaccinated (Blackstock, 2021). 

And then we have the disability community – which constitutes 26 percent of the U.S. population (CDC, 2021). Let’s remember that this community is more likely to be institutionalized – in congregate care like nursing homes, assisted living, and group homes – making it impossible for them to isolate themselves as a preventative measure that others can take advantage of while waiting for the vaccine. We know that COVID-19 has hit this community harder than the non-institutionalized community. Others require care at home, which while less risky than say a nursing home, still exposes people to the vectors of infection that disabled people can’t do much to avoid because health care workers are coming in on a daily basis (Pulrang, 2021). One fear affecting the disability community from the start of the pandemic is that the government and fellow citizens just don’t care if we die. This idea is rooted in over a century of on and off encouragement for what is known as “Eugenics” – or the concept that society is better off without disabled people, and that they are “better off dead.” (Pulrang, 2021). And let’s not forget that communities of color and the disability community are not separate – there are overlaps and intersections between them! 

And then we have to add some more context to our discussion, specifically context about conspiracy theories related to the vaccine for COVID-19. Romer (2020) says “Conspiracy beliefs regarding the coronavirus pandemic in the US were widespread and persistent over four months, more likely to be held by either persons with conservative political ideology or in disadvantaged racial-ethnic groups and more likely to be associated with the use of conservative media outlets. Additionally, persons with non-White racial-ethnic identity and those using social media were more likely to believe that the MMR vaccine is harmful. Conspiracy beliefs and their associations with perceptions of vaccine harm present continuing challenges to the control of the coronavirus pandemic because of their persistence and association with non-acceptance of recommended action, especially mask-wearing, and increasing unwillingness to receive a vaccine when it becomes available. Confronting these conspiracy beliefs will require action by journalists and commentators, especially those with politically conservative audiences, to increase acceptance of medically recommended actions to control the pandemic.” This is important information to pay attention to in listening to the people and communities we serve.

People may feel hesitant about taking the COVID-19 vaccine and we must explore the reasons for this before we engage in discussions with our clients on this topic. We want to reference noted medical historian Harriet Washington who points out that trying to understand a problem without history is like trying to treat a medical patient without taking a medical history – and that’s really why we are here today – to give you some historical context that will assist you in your work with supporting the people and communities you work with in making decisions about their lives. Let’s remember that our perceptions of vaccines reflect the seriousness of the diseases they are related to as well as popular values, culture, human risk assessment, and politics. But acceptance of a vaccine is never totally determined through a rational balancing of risks and benefits because that differs from person to person (Allen, 2020).

The truth is, vaccines may often be a hard sell since they prevent rather than cure disease and may seem scary even though they are generally quite safe. Successful vaccination campaigns rely a lot on trust in the people that administer them. And trust in science, as well as government is not always high in the communities we serve – especially in communities of color and in the disability community. Existing knowledge tells us that people’s willingness to be vaccinated links and connects to either their access to vaccines or trust issues related to vaccines (Wallis, 2021). Our talk today is heavily related to the trust factor.

Let’s start by looking back 120 or so years ago to use history as our guide. In the late 1800s and early 1900s, government workers fighting smallpox epidemics sent vaccinators out with police to enforce people getting a vaccination shot. For example, they’d enter factories where smallpox cases had been reported, lock the doors and force all workers to get vaccinated in what was known as a “vaccination line.” That vaccine sometimes caused swollen arms, fever, and bacterial infections. Vaccination could, therefore, cost people up to a week’s worth of missed wages. Of course, there was resistance to getting vaccinated, right? Imagine the tone that this set in the community.

So, what’s different nowadays? We have a politically divided nation, even after the recent political election. There’s lots of evidence that trust in science is low and experts, including politicians, are often distrusted. If we look at views about vaccinations for children, we see lots of hesitant parents. And of course, efforts to fight COVID-19 in the United States have been clumsy and chaotic at best, leaving Americans to doubt the competence of their governments and institutions at addressing the disease. This does not bode well for people to embrace the idea of a vaccine campaign.

The coronavirus vaccine is now being introduced and is currently being marketed as personal protection for health care workers and people at high risk during this phase of the roll-out. Over the coming months, more and more people in wider categories will have access to the shot. An effective vaccination campaign may try to instill a sense of solidarity, or altruism, as well as a more general sense that without vaccination, the economy can’t get back on its feet. But will people take advantage of this opportunity? We will have to see. How that plays out. We are here to talk about some important socio-historical factors that may be present in the minds and hearts of the people you support – things you need to know about in order to both understand and acknowledge how history may be a factor in any given individual’s choice to vaccinate or not.

But let’s start with some basic information about the vaccine. We are not medical experts, but we wanted to share some good resources and basic knowledge about the vaccine with you. The Centers for Disease Control and Prevention (known colloquially as “the CDC”) is recommending that all who can get a COVID-19 vaccine do so, also that you wear two masks, stay at least 6 feet apart, avoid crowds, and thoroughly wash your hands with soap and water for at least 20 seconds to protect against COVID-19. This CDC website has all sorts of helpful questions and answers you can check out. Some of the basic things you should know about COVID-19 taken from that website are as follows:

  • COVID-19 can have serious, life-threatening complications, and there is no way to know how COVID-19 will affect you. And if you get sick, you could spread the disease to friends, family, and others around you!
  • Clinical trials or studies of all vaccines must first show they are safe and effective before any vaccine can be authorized or approved for use, including COVID-19 vaccines. The known and potential benefits of a COVID-19 vaccine must outweigh the known and potential risks of the vaccine for use under what is known as an Emergency Use Authorization (EUA) and that’s what we have for this vaccine.
  • Getting COVID-19 may offer some natural protection, known as immunity. Current evidence suggests that reinfection with the virus that causes COVID-19 is uncommon in the 90 days after initial infection. However, experts don’t know for sure how long this protection lasts, and the risk of severe illness and death from COVID-19 far outweighs any benefits of natural immunity. COVID-19 vaccination will help protect you by creating an antibody (immune system) response without having to experience sickness.
  • None of the COVID-19 vaccines contain the live virus that causes COVID-19 so a COVID-19 vaccine cannot make you sick with COVID-19.
  • All COVID-19 vaccines currently available in the United States have been shown to be highly effective at preventing COVID-19
  • All COVID-19 vaccines that are in development are being carefully evaluated in clinical trials and will be authorized or approved only if they make it substantially less likely you’ll get COVID-19
  • Based on what we know about vaccines for other diseases and early data from clinical trials for this vaccine, experts believe that getting a COVID-19 vaccine may also help keep you from getting seriously ill even if you do get COVID-19
  • Getting vaccinated yourself may also protect people around you, particularly people at increased risk for severe illness from COVID-19.
  • Immunization also protects others. The target audience should be familiarized with the concept of herd immunity, which is defined as the proportion of immune individuals in a given population against a specific pathogen. The idea that vaccines protect not just an individual, but enable us to protect others that cannot be vaccinated, could improve willingness to vaccinate.  

It’s important to know that the CDC also has a lot of more detailed information about questions that people ask, such as information about how they make recommendations for who gets the vaccine at what point. You may find this information helpful to read before meeting with people on your caseload – or you may share these links with them.

CDC questions from patients about vaccine

How CDC is making COVID-19 vaccine recommendations

We’d also like to talk about how the vaccine is starting to be shared with people here in Massachusetts. Here are a few important things to know. First of all, the vaccine is free. Anyone who lives, works, or studies in Massachusetts can get a vaccine. You can get vaccinated even if you are an undocumented immigrant. Getting a vaccine will not impact you or your family’s immigration status. The so-called “public charge rule” does not apply to getting the vaccine. We presume this is important information as part of JRI’s community might include undocumented persons.

Here is a link to the MA state vaccination timeline

So we have just shared some of the most basic information about both COVID-19 and the vaccine. Now we’d like to introduce you to information from the field of “vaccine hesitancy” studies. This is an entire area of study in public health and medicine that we feel social service workers should be familiar with in these times. “Vaccine hesitancy” refers to the delay in acceptance or refusal of vaccines despite availability of vaccine services in the face of contagious diseases (World Health Organization, 2021). Vaccine hesitancy is about access as well as affordability and availability of the vaccine – and the value of the vaccine to the intended audience. How well people trust the idea of vaccination is a factor here too. Trust in vaccination is related to the factors of effectiveness, safety, reliability, the competence of healthcare systems in general, and people’s beliefs about the motivations of policymakers who are addressing vaccination. Vaccine hesitancy is a complex as well as a context-specific phenomenon which varies across time, place, and specific type of vaccine (such as MMR vs. COVID-19). Vaccine hesitancy is additionally influenced by factors which can include complacency, convenience, and also confidence. Although vaccine hesitancy is a well-studied phenomenon, to date, very little effort has been made to spend COVID-19 funding on preparing people to be willing to take the vaccine. Rather, a majority of funds have been focused on creating and manufacturing the vaccine in record time. We have a little bit of data from the Kaiser Family Foundation that tells us about vaccine hesitancy in the U.S. population by a few racial and ethnic groups. We know, for example, that Black and African American and Latinx and Hispanic adults are more likely to want to “wait and see” what happens with other people’s vaccinations before making a decision about their own shot. You can see where other groups fall on the list on this chart as well.

Now we also want to talk about what the literature says about how to address vaccine hesitancy. Standard responses by medical professionals to vaccine hesitancy in the non-COVID-19 specific literature include the following practical tips, which have some application to social service professionals as well (Shen, 2019). It’s important to note that this list is presented from a medical provider’s perspective, and may differ somewhat from how people in social services might approach discussions with the people they serve, using a more self-determination-oriented perspective.

  1. Start early with encouraging people to get the vaccine/consider getting it,
  2. Present vaccination as the default approach, 
  3. Build trust with the provider, 
  4. Be honest about side effects, 
  5. Provide reassurance about the robust vaccine safety system, 
  6. Focus on protection of the person and community via the vaccine, 
  7. Address the reality of limited pain experienced with the shot 

We also wanted to share two more resources on vaccine hesitancy:

On vaccine hesitancy in the Somali community

Myths and misconceptions about vaccines from the World Health Organization (WHO)

Understanding and acknowledging history

Now that we’ve gone over the basics of the vaccine, and the field of vaccine hesitancy, we want to get into the core of our workshop, which gets at the history of science and medicine that people don’t often talk about. History often strikes people as a boring topic, but the truth is, it lives on in people’s hearts and minds and that’s why we have to pay attention to it. So we are talking about the COVID-19 vaccine today, and vaccines are an aspect of science. And science is something people associate with experiments and research. And the fact is, numerous unethical scientific experiments have been conducted on people in the United States and beyond – especially people from oppressed communities. These experiments were either conducted without the knowledge or consent of the people involved or they were illegally conducted. Sometimes, the U.S. public health service sought to conduct experiments in other countries as they would be illegal in the U.S., such as when they sought to inject sex workers and prisoners with sexually transmitted diseases in Guatemala, in order to track the progression of the disease, a bombshell discovery that just came out within the last decade (Rodriguez & Garcia, 2013). We’ll talk about that case in a little bit. Much of the experimentation we are talking about took place in the 19th – 20th centuries, the latter of which is well within the recent memory of many of the people you serve and support in JRI practice.

Now when we talk about scientific experiments, let’s talk about what we mean, what we are specifically referring to. These experiments included exposure to chemicals and biological agents – some might even view these as weapons. By that, we are referring in some instances to infection with deadly or debilitating diseases as well as human radiation, injection of toxic chemicals, torture experiments, surgical experiments (sometimes without anesthesia), tests involving mind-altering substances, and many other atrocities. Children were not left out of this treatment, nor were members of the disability community. BIPOC communities and prisoners were especially impacted by these experiments. Sometimes this experimentation was framed as “medical treatment.” And this is part of why this history creates such a problematic and challenging foundation for vaccine hesitancy and even vaccine fear among the populations we all work with today.

We need to reiterate that many of these experiments violated U.S. law. While others were sponsored by elements of the U.S. government purportedly set up to protect and serve our population, such as the CDC and the U.S. military (Government Accounting Office, (GAO), 1994). It has more recently become known that these activities were often secretive and took place without the awareness or approval of the government. While there has been a lot of ethical, professional, and legal fallout around these instances, leading to changes in how experiments are conducted, the harm in the memory of the communities that were impacted remains. And it is that memory that we have to honor and address in our work. Getting up to speed on some of the details of what led to that collective memory leading to fear and distrust of the medical establishment is the next order of business for us today.

Case studies:

We are going to present to you four examples of historical cases that we argue inform the collective experience of our clients’ potential reluctance to accept a COVID-19 vaccine despite their potential higher risk for suffering from the virus (Diament, 2020; MacDonald & Ostroff, 2020). All four of these cases have implications for the current experiences that people have with the medical system today, yesterday ,and tomorrow. One example relates to the disability communities, one relates specifically to the Guatemalan community and two relate to Black and African American communities. We also want to take a moment to highlight that the communities JRI serves are often multiply marginalized, owning or experiencing more than one social identity at a time, such as race, ethnicity, and disability. We believe in taking an intersectional approach in our work. We know, for example, that the disability community is often multiply marginalized, and there are many disability community members of color, for example, so while our case examples may at first sound discrete or siloed, they may very well be not like that at all.

Let’s start our case studies by talking about the disability community. The United States Centers for Disease Control’s current non-binding recommendation is to offer vaccines to disabled and chronically ill people – “aged 16—64 years with underlying medical conditions which increase the risk of serious, life-threatening complications from COVID-19” – in Phase 1c of the vaccine rollout. But then there is the fear that some in the disability community may have due to a history of medical experimentation on their community. Let’s talk about that.

Case 1: Hepatitis injection with children with intellectual disabilities

In this case, we are talking about children with intellectual and developmental disabilities (IDD) who lived at the Willowbrook State School in Staten Island, New York. This was a large institution with hundreds and hundreds of students who were intentionally given live hepatitis injections in an attempt to track the development of the viral infection. This scientific study began in 1956 and lasted for 14 years until 1970. Parents were unduly induced to give their consent. For example, when the main school was closed to new admissions in 1964 due to overcrowding, parents were told there were openings in the hepatitis unit for children who could participate in the study. The researcher also wanted to determine the effectiveness of gamma globulin injections as protection against hepatitis. He justified the deliberate infection of children with IDD by claiming that due to the high rate of hepatitis infection in the school it was practically inevitable that these children would become infected anyway. This became a huge scandal after the fact, and parents and disability advocates were horrified (Rothman & Rothman, 1984).

Let’s focus on talking about what’s wrong with this scientific experiment scenario. Children in a mental health facility can’t fully understand the risks of participating in a study. Parents were coerced into having their children participate. The public outcry over the Willowbrook case was largely due to the impression that parents had little choice over whether or not to participate in the research. Parents who wanted care for their children may not have had other options for placement. And in the end, it is not appropriate to use a vulnerable, institutionalized population for medical experimentation. Injecting the hepatitis virus into children with IDD to deliberately infect them does not respect them as persons – a basic tenet of research ethics. There is no compelling reason to study viral hepatitis in children before studying it in adults for example. It has been pointed out that although there were approximately one thousand adults working at the school at the time, none of them were enlisted for the same study. The bottom line is that hepatitis was widely prevalent among the children with IDD due to overcrowding and lack of good sanitation, something the staff should have been responsible for addressing in the first place, but instead, someone in power focused on conducting this experiment. This episode has created a lasting distrust among elements of the disability community – and in the families of disability community members. Can you see why a person might question taking an injection with a history like this?

Case 2: Injection of Guatemalan people with syphilis

Our next case is actually an international case from Central America, specifically Guatemala. You may wonder why we are drawing on an international case. However, this case has been felt deeply here in Massachusetts, home to many people with Guatemalan roots. The U.S. Public Health Service – a government agency – led experiments on humans in Guatemala because they could not run them legally in the U.S. Medical doctors and nurses deliberately infected Guatemalan soldiers, sex workers, prisoners, mental patients, and even orphans with syphilis without giving them informed consent, resulting in at least 83 people dying that we know of between 1946 and 1948. On October 1, 2010, U.S. President Barack Obama, Secretary of State Hilary Clinton, and Secretary of Health and Human Services Kathleen Sebelius formally apologized to Guatemala for the ethical violations that took place. Guatemala condemned the experiment as a crime against humanity with a paired lawsuit. This made national news within this past decade and has reverberated in Central American communities. This three minute video gives you a sense of the atrocities associated with this case, which has only just come to light in the last few years and has been all over the news in Massachusetts, where the story broke.

The woman in the photo presented above is one of the orphans who was deliberately infected with syphilis as a young girl. She tells of being called to the medical office of her orphanage as a young girl, being told to spread her legs, and being shot with a needle, infected with syphilis, with no consent process whatsoever, no choice whatsoever. Her story is recorded in an article by The Guardian newspaper (Carroll, 2011).

While many Americans of Central American origin are citizens, for undocumented immigrants, there may be other concerns about getting vaccinated as well. These might include having their personal information shared with the U.S. Immigration and Customs Enforcement, also known as ICE. We know that this has been a prominent factor in the delivery of social services in recent years (Križ, Slayter et al. 2016). Undocumented immigrants might not show up for vaccination unless authorities are really open about what information is being collected as people get the vaccine, what that information will be used for, what it cannot be used for, and where it is going to be shared. This may be especially challenging after reports last December from President Trump’s administration asking for personal data including names, birth dates, and addresses after the vaccination (Stolberg, 2020).

While we are talking about Central American immigrants, here are some Spanish language resources for you:

CDC Spanish vaccine website

MIRA Coalition: Recursos en español

Case 3: Medical experimentation on Black and African American Women

Our next case relates to the legacy of medical experimentation on Black and African American people that has existed in this country since the slavery era. For an extremely detailed history of this experimentation, watch this podcast from the New York Times. And while some may say that those times are long gone, we may need to revisit that statement when we listen to the Black and African American community about their experiences. We raise this case because the Black and African American community has been hard hit by COVID-19 on top of experiencing discrimination in health care settings.

Let’s take a look at some context as a precursor to the short film we will show. Some 70% of Black and African Americans believe that people are treated unfairly based on race or ethnicity when they seek medical care (Kums, 2020). This experience comes from a history of unequal access to health care which is intensified by the COVID-19 pandemic – this is known as medical racism. In its 2018 annual report, the Agency for Healthcare Research and Quality, part of the U.S. Department of Health and Human Services, found that 40% of the measures of healthcare quality the agency assessed were worse for Black and African American people as compared to White people (Kums, 2020). This, of course, is disproportionately hurting Black and African American lives both physically and economically (Kums, 2020). For example, A November 2020 study by the American Heart Association showed that Black and African American people have made up nearly 60% of COVID-19 hospitalizations in the U.S. This is a disproportionate number that researchers relate to societal structures reinforcing health disparities due to socioeconomic status, lack of access to health care, and to Black and African Americans being more likely to work in essential jobs that put them at risk (Kums, 2020). All BIPOC communities continue to experience racism in health care, including barriers to COVID-19 testing and treatment. And the disease has killed nearly three times as many Black and African American, Latinx and Hispanic and American Indian and Alaskan Native people as White people. The death of Dr. Susan Moore is emblematic of this. She was a Black or African American doctor in Indiana who publicly decried bias in her medical treatment for COVID-19. She succumbed to her infection in late December 2020 (Wallis, 2021). None of this builds the medical establishment a lot of trust when the vaccine comes around.

Let’s see what we can learn about why the Black and African American people we work with might exhibit iatrophobia or the fear of doctors when confronted with the medical necessity to see a physician or get vaccinated, for example. We are now going to show this short film on the history of medical experimentation in this community. So, after seeing that film, I think it is fair to say one can’t assume that we can expect people to line up willingly for the vaccine. Saying ‘It’s time for the vaccine now; believe in us,’ leaves aside the entire atmosphere of negligence, haphazardness, and inequity surrounding caring for people with COVID-19 and preventing COVID-19, as Zackary Berger says. He’s a bioethicist and associate professor of medicine at the Johns Hopkins School of Medicine. Berger goes on to say that to help people trust the vaccines, it is important that “sources of authority” from within their own communities need to speak out in favor of the vaccine – and those sources of authority may in some cases be you folks from JRI!

Linking this back to the vaccine, we do have some data on what Black and African American people are thinking about the vaccine. According to some studies, there are a lot of concerns about side effects. In a recent Kaiser Family Foundation survey, 71% of vaccine-hesitant Black and African American people surveyed reported this was their number-one concern, whereas 59% of all other people disinclined to get the shot did so. Black and African American people surveyed were also two times as likely to worry they might get COVID-19 from the vaccine. Given high levels of medical mistrust, for which there is good reason, there is extra need for medical professionals to be upfront and transparent about vaccine information both the good and the bad. And you have that information from us, so you are now armed with information!

But we can’t end our presentation without talking about one final case that you need to be aware of.

Case 4: Tuskegee experiment

Finally, we want to share the case of the Tuskegee Experiment because it has had such an incredibly negative impact on the Black and African American communities in the U.S. and we believe this may relate to vaccine hesitancy as well.

For about 40 years between 1932-1972, the U.S. Public Health Service, working alongside the Tuskegee Institute, began to research the natural history of syphilis in 600 Black or African American men – 399 with syphilis, 201 who did not have the disease. They did not gather what is known as informed consent. Researchers told these men they were being treated for what was known as “bad blood.” That was a local term used to describe syphilis as well as anemia, and even fatigue. People who participated in the research did not get any treatment for syphilis once it became available, but they did receive free medical exams, free meals, and burial insurance. In 1972, a news story caused a public fury resulting in an investigation determining that participants had been misled. Even when penicillin became the treatment of choice for syphilis in 1947, researchers did not offer it to the participants in the study. The participants were never given the option of leaving the study, even when this treatment was widely available to others (Centers for Disease Control and Prevention, 2021).

The Tuskegee Experiment has become a national outrage that is well known in Black and African American communities. How do you imagine this has impacted the people and communities we support and serve? This short video tells the story of this scandal.

Summary of lessons from case studies

So we’ve just walked through four case studies that document a series of ways in which BIPOC communities and/or the disability community has been oppressed in medical experimentation – and the ways in which this might impact their willingness to be vaccinated for COVID-19. In reflecting generally on the history of the medical treatment of the BIPOC communities in the U.S., Dr. Samuel Roberts, a public health historian talks about how our current debates about COVID-19 reflect similar patterns to how these communities have been treated historically. He summed this up by saying that history often “rhymes” with the present. His recent talk at Salem State University is recorded here.

All of the focus we have been reading about on access to hospital treatment for COVID-19 mirrors the historical lack of access to hospital treatment for BIPOC communities. With respect to the calls for social distancing, this reflects the historical recognition that people in BIPOC communities can’t follow these guidelines due to higher likelihoods of living in overcrowded situations. On stay-at-home orders, historically and presently, this has not been a possibility for people in the BIPOC communities who are working and do not have the benefits of a welfare state that pays them to stay at home. And with respect to all the focus on preparedness vis-a-vis ventilators and PPE – there hasn’t been the thought about attention to long-term data surveillance or other preparations for pandemic responses in BIPOC communities. Finally, there is the “moon shot” vaccine which has not addressed historically informed issues of equitable distribution that beg questions about what is our infrastructure for vaccine delivery? And what bioethical discussions were held in advance about vaccine access for BIPOC communities?

We can sum it up by saying that structural ableism and racism has led to a lack of trustworthiness of health care institutions, government, academia, and industry which has led to mistrust. Disparities related to these structural problems have been noted for a long time but have not been addressed.

Inequities in access to the COVID-19 vaccine

So now there’s one more piece we need to share with you that relates to the conversations you will be having with the persons and communities you serve – and that relates to the racial, ethnic,  and disability inequities in access to COVID-19 vaccination. We know, for example, that members of the disability community are enraged that they have not been prioritized for vaccine access despite what are often higher risk statuses. We see this in California, where this population was reduced from a higher to a lower phase, causing waves of protest and angst linked to the history of disregard for the lives of this population due to Eugenic beliefs that disabled lives were not worth living. Check out disability justice activist Alice Wong’s Twitter feed for more on that. With respect to the IDD community specifically, about 6.5 million people, we know that the CDC failed to prioritize this population for the vaccine, leaving each state to make its own decision despite this group being at high risk. This often led states to either not make a decision about this group or to prioritize people with IDD in congregate care settings even though people with IDD in the community were equally at risk. We now have a disability vaccine access data tracker showing what each state is doing regarding decisions about people with disabilities. However, concerns about access for the disability community remain.

Now let’s shift and talk about racial disparities in access to the vaccine. In speaking about President Biden’s administration’s approach to addressing the pandemic, Dr. Marcella Nunez-Smith has said “Equity is our North Star here,” however, the federal government has gathered race and ethnicity data for just 52 percent of all vaccine recipients, according to a report issued recently by the Centers for Disease Control and Prevention (Stolberg, 2021). We know that White people are being vaccinated at three times the rate that Black and African American people are, per data from the 23 states that are reporting early racial and ethnic data on vaccinations. We also know that there are reports of majority-Black and African American areas struggling to deal with non-resident White people who are coming into their communities to be vaccinated, namely jumping lines (Blackstock, 2021). In the past few weeks, many states have opened their qualifications to a wider group of seniors and more frontline workers. This can further reduce the relative proportion of Black and African American people who are getting vaccinated. The fact is that the country’s population over the age of 65 is significantly whiter than other age groups. Therefore, a color-blind approach to vaccine distribution will likely prove to be problematic to the BIPOC communities.

So what does vaccine distribution look like around the country? Let’s start by looking at two cities as examples: In Philadelphia, Blacks and African Americans make up 40% of the population, but so far only 14% have been vaccinated in the city.  Latinx and Hispanic people make up 15% of the population but only 4% of vaccinated people. In Chicago, Black and African American People make up 30% of the population, but only 15% of vaccinated people. For Latinx and Hispanic people, that number is 29% of the whole population compared to 17% of the vaccinated population (Johnson, 2021).

Now let’s take a look at how that compares to what’s happening in Massachusetts. These data come from a combination of the U.S. Census, a Boston Globe article, and a vaccination tracker run by the Kaiser Family Foundation. Looking at race data, White people make up 81% of the whole population and have made up the same proportion of the vaccinated population. Black and African American people make up 9% of the population, but only 6% of the vaccinated population, representing a slight disproportionality. Asian people and Pacific Islanders make up 7.2% of the population but only 5% of the vaccinated population, another slight disproportionality. And finally, while American Indians and Alaskan Natives only make up 0.5% of the population, they make up 1% of the vaccinated population, which is good news, because the disproportionality is in the right direction. Looking at ethnicity, which is separate from race, Latinx and Hispanic people make up 12.4% of the whole population, but only 5% of the vaccinated population, this, unfortunately, does also represent disproportionality.

Given these data points, let’s move on to some suggestions about how we can address these problems on a more macro level. We have four suggestions from Dr. Uché Blackstock we can draw on for structural changes we can advocate for to address these disparities. First, she advocates that BIPOC communities must be prioritized for the vaccine. Strategies prioritizing “essential workers” and “people with underlying medical conditions” to include BIPOC communities are not enough, she argues. Access to the vaccine is a major issue and the logistics of access have not been worked out well enough for these communities, she feels. Second, the vaccine needs to come to the people “where they are at,” and in their communities – especially given the lack of Internet access and/or digital literacy on top of the history of medical mistrust, she says. Third, broad-based, thoughtful and culturally responsive public health campaigns that provide education about the vaccine are vital to the communities. She argues that we need community health workers, and trained volunteers from the communities to do door-to-door community organizing and outreach about the COVID-19 vaccine. Finally, she argues that the government must mandate the collection of racial and ethnic demographic data of those who are vaccinated, to help target public health efforts toward Black and African American communities so we can track our progress with this disease and our vaccination efforts. All of these things are tangible steps you can act on in partnership with other community agencies.

In order to help make these things a reality, there are political things you can consider as well. For example, you can take a macro-level approach and look into whether you support the Anti-Racism in Public Health Act, which lawmakers originally introduced in September 2020. It would require the federal government to begin developing race-conscious public health approaches through two programs within the Centers for Disease Control and Prevention – including infusing an anti-racist approach to the COVID-19 response. This bill would tackle glaring disparities in racial equity while declaring structural racism a public health crisis.  Click the links for more information. This bill is co-sponsored by Massachusetts Representative Ayanna Pressley, Massachusetts Senator Elizabeth Warren, and Congresswoman Barbara Lee (from California who is also a social worker!)

Suggested guidance on supporting people who are making the vaccine choice:

So how should you actually go about supporting the people you work with in their vaccine decision-making? We recommend considering the following framework for your conversations. This framework was developed by thinking about guidance from Dr. Bisola Ojikutu from Massachusetts General Hospital as well as advice from the organization Mental Health Nation. Dr. Ojikutu is an expert in racial and ethnic disparities in infectious disease. Mental Health America is an organization that recognizes the ways in which racism undermines mental health. We think this also extends to thinking about how ableism undermines mental health as well. Their wisdom, together, informs this guidance:

  1. Acknowledge root causes of vaccine hesitancy
  2. Help people think about social responsibility to family & community
  3. Consider reframing vaccination as a form of empowerment
  4. Emphasize the right to choice and self-determination
  5. Do your research. As Mental Health America notes “Fear is often based in the unknown, so learn as much as you can. Consider what is worrying you, whether it’s the side effects, how recommendation decisions are being made, or uncertainty about how the vaccine works, and make sure you’re informed.”
  6. Engage in critical thinking. As Mental Health America notes “Distinguish facts from opinions and consider relative risk.”
  7. Stay up to date. As Mental Health America notes “Keep yourself in the loop as progress is made with the vaccines and further decisions are being made about distribution. Be careful to not get sucked into consuming too much news or social media – stick to a vetted vaccine tracker.”
  8. Look towards officials you trust. As Mental Health America notes “American voters say they trust their personal physician, Dr. Anthony Fauci (Director of the National Institute of Allergy and Infectious Diseases), and the Food and Drug Administration regarding vaccine safety. The Centers for Disease Control and Prevention and World Health Organization are also reputable sources.”
  9. Think about the benefits compared to the risks. As Mental Health America notes “We don’t know everything, but so far leading trials have been safe. Under an Emergency Use Authorization (EUA), known and potential benefits must outweigh the known and potential risks before a vaccine will be approved for use. The vaccine will help you develop immunity to the virus that causes COVID-19 so that you’re able to naturally fight it if exposed in the future as well as build up herd immunity.”
  10. Make decisions in your best interest. As Mental Health America notes “If the anxiety surrounding vaccination is too much to cope with, it’s okay to step away from it all for a bit.”

We hope you have found this workshop helpful and we look forward to discussing this with you in person!