There is a swirl of fears and misinformation around the COVID-19 vaccines that has led to one of the largest instances of vaccine hesitancy in American history.
It is beyond the goals and intentions of Project Cargo to speak on the personal and political reasons why someone can refuse the vaccine, but there are groups of people who have delayed their vaccinations due to fears of the side effects stemming from their pre-existing conditions and sources of inequity in communities.
This is where Project Cargo sought to put its human outreach efforts to seek out people from these communities so they could specifically share their experiences on the vaccine fears and accessibility problems. We spoke to 7 Black individuals of age groups of 50 years and above with varying degrees of chronic illness or disease that were all connected through us generously through the aid of Glenn Ellis, a writer on equity and ethics of the healthcare system. The participants would primarily come from the states of Alabama and Pennsylvania.
Readers can look more closely at my colleague, Abby, on our report for the specific interview findings and interview methodology used to maintain ethical research practices. Here we will provide background information to explore the overarching trends of vaccine hesitancy and distrust of science in current and past times. As this will better frame the results we found in our phone interviews and lay the foundations for future research leads into vaccine equity for Black and disabled communities.
We believe that for the new technology of mRNA vaccines to be a reliable tool to fight future pandemics, people have to be willing and trusting of it. To achieve this, we continue to work to inform and listen to groups whose opinions can easily be disregarded.
A History of Faulty Ethics: The Tuskegee Syphilis Study
The Black community has historically distrusted the US medical system. In a survey conducted by the Kaiser Family Foundation [1], it found that Black adults were more likely to fall into the category of “wait and see” for getting the vaccine when asked about their vaccine status. The erosion of the trust between the Black community and doctors is founded on a series of events of exploitation, manipulation of information, and inequity. All these factors are best highlighted in the infamous Tuskegee Syphilis Study.
The Tuskegee Syphilis Study lasted between 1932 to 1972 that was carried out by the United States Public Health Service Commissioned Corps (USPHS) in Tuskegee, Alabama. It followed the lives of 600 Black, typically older, men to study the long term effects of untreated syphilis on the human body.
Syphilis is a sexually transmitted disease (STD) and that begins with a single ulcer on the genitals. This ulcer can easily go undetected and if left untreated progresses to secondary syphilis that results in rashes over the body. If left further untreated, the condition can progress into its latent stage where symptoms become more mild but a portion of cases can enter the tertiary stage that can lead to damage to the heart, brain, and joints [2]. Some cases have even been known to cause blindness.
Unfortunately, being able to report this information, one has to acknowledge the human cost in how it was collected.
In early stages of the study, there were no cures or effective treatments for syphilis and for these men, their condition was terminal. This study actually provided benefits to participants that were legitimately helpful. The men selected for the study came from lower economic backgrounds and thus the incentives of free medical exams, meals, and burial insurance was inviting as it helped relieve the financial burden of participant's disease on their lives and families.
In 1947 it was determined that penicillin was an effective treatment for syphilis. However, the participants of the study were withheld this information for the sake of completing the data collection. The researchers were later found to have actively withheld informing participants of the treatments available. If participants had access to penicillin treatments, it would have drastically reduced the severity of the tertiary stages of the disease and even saved lives.
Whistleblowers in the study helped bring this unethical practice to light and once the fact that researchers were keeping treatments and diagnosis options unknown to participants was exposed, the study was shut down in 1972. However after 40 years of having no treatment, many of the participants died from complications from the disease or developped the worst symptoms of syphilis.
In a study conducted by Marcella Alsan from Stanford Medical School and Marianne Wanamaker Department of Economics in University of Tennessee, looked into the wider implications of the syphilis study on the opinions of healthcare among Black people. What they found was that this incident rattled the trust of Black people far beyond the city limits of Tuskegee [3]. Using migration data from the General Social Survey census and the CDC’s data of morbidity and mortality, they found a direct correlation of distance from Tuskegee to life expectancy and medical trust in Black demographics. These variables dropped the closer Black people were closer to the site of the syphilis study.
This finding also led to another discovery, people migrating out of the area to escape racism and inequity of the South were likely to bring their concerns of the medical system to other states leading to a generational impact from the syphilis study.
Alsan and Wanamaker were even able to quantify the fallout of the Tuskegee Syphilis Study directly to a decrease in the life expectancies in Black men in the USA in 1980 [4] using the geographical and medical data previously mentioned. Alsan and Wanamaker found that the average life expectancy of Black men aged 45 decreased by 1.5 years. This accounts for 35% of the gap between the life expectancy for Black men and White men at the time.
Black men and women had become more cautious of visiting pediatricians as a whole. When doctor visits did occur, they would prefer to visit Black doctors over White doctors. According to an account from Aslan’s research, one Black woman prefered to drive an hour to visit a Black pediatrician rather than her usual White one in the wake of the syphilis study.
Operation Warp Speed
Science has moved at an unparalleled speed in the recent decades, but our ability to effectively communicate with the people this research can benefit has remained stagnant.
We can land rovers onto comets, design wooly mammoth hybrids to combat climate change, and create vaccines to fight a global pandemic in a fraction of the normal vaccine development time. Specifically, the COVID-19 vaccine is a demonstration of the amazing potential good bioengineering and synthetic biology can do for the world. It can take 5-10 years to develop a vaccine from scratch [5].
The COVID-19 vaccine took just a little under a year to develop.
Operation Warp Speed was a federal program that was a joint effort between the Departments of Health and Human Services (HHS) and Department of Defense (DOD). The objective was to accelerate the development of the COVID-19 vaccine through the collaboration of several biotechnology companies that would all explore possible vaccine methods. In the end, mRNA vaccine proved to be the most viable option.
The idea for mRNA vaccines is fairly new, only beginning its research a couple of decades ago and was previously used to treat for Dengue virus [6]. The advantage mRNA has over other vaccine types is how easily editable and simple in their mechanisms they are. The US government has expressed interest in the potential for mRNA vaccine and began the development for the facilities and licensing to research mRNA vaccines before the pandemic occurred.
Operation warp speed allowed for the expedited review of all the vaccine types by the FDA from 6-9 months to just a few weeks by having FDA employees and teams work in parallel for nights and weekends to review the safety of vaccine candidates [7].
Before the pandemic, many people were already hesitant to establish vaccines with weakened pathogens or only safe portions of pathogens. With the sudden introduction of a new vaccine amidst the chaotic buzz of a pandemic, the potential for mRNA to help populations reach herd immunity was hampered by previous vaccine concerns that were not fully addressed.
Modern Day Fears: Instant Information
One of the interviews we conducted brought up an interesting insight of Black youth in Participant #4’s community who do not want to get vaccinated. They shared that many Black youth are getting their information from social media sources such as Youtube. Participant #4 brought up the point of how easily people can reinforce pre-existing opinions. Unlike the days of the Tuskegee Syphilis Study where medical fears only spread as fast as people could travel, today information can be accessed instantaneously.
In a survey from Common Sense Media, teens were spending an average of 7 hours and 22 minutes daily consuming media from their devices [8]. With this much exposure to any type of content, regardless of quality or validity, young people are very likely to find themselves consuming media that might dissuade them from taking the vaccine. Any concern or question can be answered by content creators who may not necessarily be qualified to do so or by people with anti-vaccine agendas.
People are also influenced by the opinions and choices of celebrities. Kyrie Irivng is one of the most prominent figures in the circle on vaccine hesitancy as of recent times. He is the star player on the Brooklyn Nets basketball team. New York city has enforced a vaccine mandate where people must prove vaccine status before entering a gym setting.
Irving is part of a minority of NBA players without at least one dose of the vaccine where 95% of active NBA players are vaccinated. Kyrie has stated that there was not a concise reasoning for his choice.
“Once again, I’m going to repeat this. This is not about the Nets, this is not about the organization, it’s not about the NBA, it’s not politics, It’s not any one thing. It’s just about the freedom of what I want to do,” Kyrie stated [9].
Regardless of reasons, Irving has been cited as the face of anti-vaccination sentiments in the NBA and in the workplace. People stating that he is doing it to protest those who have lost their jobs due refusing the vaccine [10]. Leading to a movement coined as the “medical autonomy” revolution.
This movement is founded on the belief that it is unconstitutional to enforce vaccine mandates on people. With the ability for people to refuse vaccines in certain places, proponents of this movement are seeing these as victories to bolster typically right-wing efforts. Irving himself may not necessarily associate with these groups or agendas, but his influence has certainly been repurposed and reshaped to support and empower vaccine hesitancy.
Cases of Rare Side Effects
We were able to speak with someone who experienced one of the rarest and most severe side
effects of the mRNA vaccine. Participant #6 who received Guillain-Barre syndrome (GBS) after their second dose of the 2nd Pfizer-BioNTech vaccine.
GBS can lead to paralysis as a result of the body’s own immune system attacking the spinal cord after an infection [11]. There have been such few cases of GBS from mRNA vaccine that the correlation is still unclear. However, GBS has been monitored for the flu vaccine with a rate 1-2 cases per million flu vaccine doses administered. It is also possible to contract GBS from an actual infection of the flu.
“It happened while I was driving, I couldn’t feel my legs,” participant #6 recounts. They had developed their paralysis while behind the wheel. Thankfully they were able to pull over for emergency services, but as of writing this they are still recovering from GBS and learning how to walk again.
Most amazingly, they share that they do not regret getting vaccinated.
“My only regret was getting the Pfizer vaccine and for not waiting longer to get vaccinated,” they shared.
Participant #6 got the vaccine as soon as possible to protect their elderly mother. They had never received side effects from any of their previous vaccinations. They still firmly believed that getting vaccinated is essential for beating the pandemic and getting communities into the phase of recovery
The choice to not take a vaccine and potentially get one of its extremely rare unintended reactions seems to be adequate enough for people to take their chances and encounter the real disease. The risk assessment people who are declining the vaccine may be grounded in reason. Notable arguments typically fall in the lines of concerns of the long term effects of the vaccine and the lack of risk many young or healthy individuals perceive about themselves. Overall it is safer to be vaccinated than to be susceptible to COVID-19.
What Happens Next
Hopefully we were able to provide sufficient background information to better interpret the results of our phone interviews. We sought to address the issue of vaccine hesitancy in the elderly Black community with chronic illness or disabilities. In order to best understand their experiences and stories, one needs to be aware of the historical and current events that shape the needs of different communities. Hopefully we have garnered interest in looking further into this topic.
References [1] Liz Hamel Lunna Lopes, and Jun 2021. “KFF COVID-19 Vaccine Monitor: June 2021.” KFF, 30 June 2021, https://www.kff.org/coronavirus-covid-19/poll-finding/kff-covid-19-vaccine-monitor-june-2021/.
[2]“Syphilis.” Mayo Clinic, Mayo Foundation for Medical Education and Research, 25 Sept. 2021, https://www.mayoclinic.org/diseases-conditions/syphilis/symptoms-causes/syc-20351756.
[3] II, Vann R. Newkirk. “An Unethical Medical Study Took a Year off the Lives of Black Men.” The Atlantic, Atlantic Media Company, 13 July 2021, https://www.theatlantic.com/politics/archive/2016/06/tuskegee-study-medical-distrust-research/487439/.
[4] https://www.nber.org/system/files/working_papers/w22323/w22323.pdf
[5] Shipman, Matt, et al. “Vaccine Q&A: How Long Does It Take to Make Vaccines?” NC State News, 16 Dec. 2020, https://news.ncsu.edu/2020/12/vaccine-manufacturing-q-and-a/.
[6] Richner JM;Himansu S;Dowd KA;Butler SL;Salazar V;Fox JM;Julander JG;Tang WW;Shresta S;Pierson TC;Ciaramella G;Diamond MS; “Modified Mrna Vaccines Protect against Zika Virus Infection.” Cell, U.S. National Library of Medicine, https://pubmed.ncbi.nlm.nih.gov/28222903/.
[7] Burton, Thomas M. “FDA Head Defends Covid-19 Vaccine-Approval Process.” The Wall Street Journal, Dow Jones & Company, 3 Dec. 2020, https://www.wsj.com/articles/fda-head-defends-covid-19-vaccine-approval-process-11606954168.
[8] Siegel, Rachel. “Tweens, Teens and Screens: The Average Time Kids Spend Watching Online Videos Has Doubled in 4 Years.” The Washington Post, WP Company, 29 Oct. 2019, https://www.washingtonpost.com/technology/2019/10/29/survey-average-time-young-people-spend-watching-videos-mostly-youtube-has-doubled-since/.
[9] “Kyrie Irving: Refusal to Get Vaccinated about 'What's Best for Me'.” ABC News, ABC News Network, https://abcnews.go.com/Sports/wireStory/irving-refusal-vaccinated-whats-best-80572620.
[10] Ecarma, Caleb, et al. “Kyrie Irving's Anti-Vax Stance Has Earned Him a Cheering Section on the Right.” Vanity Fair, 13 Oct. 2021, https://www.vanityfair.com/news/2021/10/kyrie-irving-anti-vax-stance.
[11] “GBS (Guillain-Barré Syndrome) and Vaccines.” Centers for Disease Control and Prevention, Centers for Disease Control and Prevention, 25 Aug. 2021, https://www.cdc.gov/vaccinesafety/concerns/guillain-barre-syndrome.html.