Raquel Gonzalez hasn’t left her condo for nine months because of the coronavirus. Her only outings have been doctor visits and the 30-minute walking routine she does around the parking garage to her condo.
Gonzalez, a 78-year-old Cuban-American, says the initial pressure President Trump put on pharmaceutical companies to quickly develop vaccines to fight COVID-19 made her question their efficacy.
“I always said I wasn’t going to get the vaccine because Trump was pushing the doctors and scientist to finish it before the election. I didn’t think that was good,” she says.
But on hearing the messages from trusted health officials and other public leaders on the affect the vaccines could make on curbing the virus, Gonzalez says she has since changed her mind.
“Seeing that Dr. Fauci, Biden, Obama and Bush are going to take the vaccine, I believe that it is good now and you can trust it,” she says.
The U.S. Food and Drug Administration approved Pfizer’s coronavirus vaccine for emergency use on Dec. 11 and a week later approved the Moderna COVID-19 vaccine. The first doses of the Pfizer vaccine were administered at UCLA Health on Dec. 16 – a light at the end of a long dark tunnel for many citizens.
For others, fears around vaccine risks are outweighing their hope to return to normalcy.
The pandemic has been “mentally alienating” for Ernestina Paramo.
A 67-year-old Mexican-American mother of six, Paramo is unable to work due to a medical condition. “I’m worried about my kids and I’m stuck at home. I want to leave, I want to cry, I’m frustrated. I have a lot of feelings about it.”
Yet Paramo also has concerns about the coronavirus vaccine. “I wouldn’t get it,” she says. “I don’t know what it has inside it.”
Gonzales and Paramo are not alone in their concerns. A survey from the Public Policy Institute of California shows that just half of the Latinx population said they would “definitely or probably take vaccine.”
Nationally, those percentages are even lower. Black and Latinx communities are especially concerned about vaccine safety and effectiveness, according to a survey from the COVID Collaborative.
“You've got folks that are actually really excited that the vaccine is finally here and you have some that want nothing to do with it,” says Yohualli Balderas-Medina Anaya, MD, assistant clinical professor in the Department of Family Medicine at the David Geffen School of Medicine at UCLA. “No one wants to feel like a guinea pig or like they’re being experimented on.”
The roots of vaccine hesitancy
For those in communities of color who remain unconvinced that they should get the vaccine, “their anxieties are completely justified,” says Alejandra Casillas, MD, MSHS, assistant professor of medicine in residence, in the Division of General Internal Medicine and Health Services Research at the David Geffen School of Medicine at UCLA
“I think we have to be transparent and up front about that as a medical community,” she says. “It is evidence of what not only has happened in the past, but is still happening today.”
Dr. Casillas says that some patients who grew up in the era of the Tuskegee Syphilis Study remember the gross injustices and experiments of that time.
In 1932, 600 Black men were enrolled in a study on the progression of syphilis under the guise of receiving free medical care for their condition. Even as some men began to die, go blind or develop other severe health conditions due to their untreated syphilis, researchers continued the experiment for 40 more years. The exploitation of these patients has become known as one of the most infamous displays of medical racism in history.
During the same period, teaching hospitals across the country conducted involuntary hysterectomies and sterilization on women of color, cruelly known as the “Mississippi appendectomy.” The forced sterilizations weren’t limited to the South – they happened in Los Angeles as well.
Then there was Henrietta Lacks, a Black mother of five who died in 1951 from an aggressive cervical cancer at the age of 31. Lacks’ cancer cells were taken without her knowledge or consent and have been involved in numerous medical advancements in cancer, immunology and infectious disease ever since. Companies that profited from her cells failed to inform or compensate her family for decades.
Recent allegations of unwanted hysterectomies reported by women detained in U.S. Immigration and Customs Enforcement facilities are a reminder that historical mistreatment continues even today.
Dr. Casillas says medical mistrust has even shaped the way she has approached care for her family.
“When I advocate for my parents who are Latino and don't speak English very well, I'm pretty up front to make sure their doctors know that I’m a doctor too,” says Dr. Casillas. “Because I'm afraid that if I don't, my family won’t get the care that maybe other patients – who are richer, who are not ethnic minorities and who just have not been schooled in the way of how you advocate for yourself – are able to get.”
The devastating toll of COVID-19
In California, 38% of the population is Latinx. As of Dec. 11, they account for nearly 60% of COVID-19 cases and 47.7% of related deaths.
While Black residents are just 6% of the state’s population, they make up 7.2% of all COVID-19-related deaths.
Latinx and Black Californians are being hospitalized and dying at 2-4 times the rate of white residents.
Dr. Balderas-Medina Anaya says the devastating data reflect how people of color are more likely to be in at-risk environments. “Racial and ethnic minority groups are disproportionately over-represented in low-wage, essential work,” she says.
A lack of paid sick leave, dependency on regular day-to-day income, lack of appropriate protection at work, and a greater tendency to live in multi-generational homes add to the risk of infection.
“These groups can’t choose to miss work because they depend on that regular income,” Dr. Balderas-Medina Anaya says. “They often don't have the ability to take time off and if they are part-time workers, then they likely hold multiple jobs.”
Bita Amani, PhD, MHS, co-chair of the COVID-19 Task Force on Racism and Equity and associate professor at Charles R. Drew University of Medicine and Science, Department of Urban Public Health, says the intersecting pandemics – structural racism and COVID-19 – have revealed what’s working, what’s not and what is still needed to achieve health equity.
“This is not only a commentary on where the U.S. health care system is today when it comes to investments in public health,” Dr. Amani says. “It's also a commentary on the deep-penetrating social injustices within this country. When you look at the disparities by race, you see how structural racism is playing a role.”
Along with misinformation shared on social media and from the White House and the impact of the anti-vaccine movement, medical mistrust continues to heighten fear, according to Keith Norris, MD, MPH, professor of medicine and vice chair of the department of medicine’s Office of Equity, Diversity and Inclusion at the David Geffen School of Medicine at UCLA.
That mistrust “may lead to a lower vaccine uptake rate in communities that need it most – communities of color with increased rates of COVID-19 hospitalization and deaths,” Dr. Norris says. “It is easy to understand why people would not want to take a vaccine for a virus they have been told is not dangerous or does not exist and is a hoax.”
Why trust matters in vaccine development
Early on, drugmakers had difficulty attracting Black, Indigenous, people of color (BIPOC) to participate in COVID-19 vaccine trials – necessary for understanding whether the vaccine would differently impact various groups.
In September, Pfizer expanded its trial from 30,000 to 44,000 participants in order to increase enrollment from new populations. At the same time, Moderna slowed its enrollment to ensure representation from communities of color.
The UCLA Vine Street Clinic is a multidisciplinary site for clinical trials, behavioral research, and direct services at the intersection of treating addiction and the prevention of the spread of HIV.
The clinic partnered with Moderna to conduct a phase 3 trial of the company’s mRNA vaccine – and were able to enroll a large turnout of African American and Latinx participants. In more than 90 trial sites across the country, the Vine Street Clinic led in diversity recruitment for two weeks, with 80% of participants identifying as BIPOC.
The reason for that, clinic workers say, is the long-standing relationships the clinic has built in the community. These are key to mitigating fears about the vaccine, says Jesse Clark, MD, medical director of the UCLA Vine Street Clinic.
“I think it's greatly important to address that you're not simply dropping in when you have a vaccine, an experimental medication or therapy that needs to be tested,” Dr. Clark says.
One of the volunteers for the trial was 57-year-old Shawn Griffin, of the Hollywood area. In mid-August, Griffin became one of the first participants to receive the Moderna COVID-19 vaccine at the UCLA Vine Street Clinic.
“I was feeling really anxious and frustrated with everything that was going on,” he says, “and I thought one of the best ways to deal with that anxiety and frustration was to get involved in a solution.”
Chatter about misinformation such as doctors injecting the virus into patients had him apprehensive about enrolling at first.
“One of the things that they told me was that they would not be injecting the virus into me. I wanted to be sure, so I asked the doctor again,” Griffin says. “Even though he had to repeat himself, he wasn't short with me or anything. He made sure my fears were driven away and that was a good feeling.”
Christopher Blades, community education program manager at the UCLA Vine Street Clinic, says it was important for his team to reach populations that are typically underrepresented in research but “experienced the heavy burdens of this pandemic.”
“With that comes another level of work that has to be done,” he says.
Blades and his team spent several weeks educating interested participants on vaccine development, going over benefits, drawbacks and allowing them to digest the information on their own.
“There was quite a bit of phone tag and talking to them multiple times before setting up an appointment,” Blades says. “There was a level of anxiety that needed to be addressed prior to them providing consent.”
A challenge Blades’ team faced was making sure participants didn’t fall through the cracks.
“Regardless of what we had going on, any time someone would call us, we always responded within an hour or two, because we know people's interest changes over time,” he says.
Overcoming mistrust to fight misinformation
Dr. Balderas-Medina Anaya says honest conversations with patients are part of the “trench work” she and other physicians, nurses and health care personnel are doing to mitigate concerns, build trust and correct some of the misinformation being circulated.
“Sometimes I feel like with some of my patients, the ‘comadres’ have more clout with them than I do as their doctor,” she says.
Since 2019, training physicians on understanding medical mistrust has been an essential role for Nina Harawa, PhD, MPH, policy core director of CHIPTS, professor at the David Geffen School of Medicine at UCLA and Charles R. Drew University of Medicine and Science and member of the COVID-19 Health Equity Research and Advisory Committee at UCLA.
Early this summer, Dr. Harawa provided physician trainings on gaining patient trust in the age of COVID-19. In panel discussions with experts across disciplines and organizations, she and other speakers unpacked medical mistrust as it relates to patient-provider relationships, messaging, telehealth, contact tracing, surveillance, treatment and prevention.
“I never anticipated that a global pandemic would complicate and undermine these efforts as it has,” Dr. Harawa said on Twitter. “Patients didn’t go to the hospital when they should have because of mistrust. Because of fear. Patients that DID go to the hospital when they should have and were turned away one, two, three times only to die at home.”
She notes that the lack of diversity in medicine, biomedical research and public health contributes to mistrust, further increasing harm.
“We trust those we know and care about because they are family and friends, and feel reassured if someone knowledgeable and close to us can explain a diagnosis or confirm an MD recommendation,” Dr. Harawa said on Twitter. “The underrepresentation of Black people in all biomedical fields means an underrepresentation of such individuals in patients' social networks.”
Like with Raquel Gonzalez, Dr. Casillas says it’s important for patients to see health care workers and influencers who are members of communities of color get the vaccine in order to slow excess rates of hospitalization and death.
“We are going to get the shots first and patients can see that we're going to be OK and that we're excited to get the vaccines,” Dr. Casillas says.
Though important, overcoming vaccine hesitancy is still only a small piece of the work that has to be done to build trust in medical institutions. Disparities in health care existed long before the pandemic and were magnified because of it, says Dr. Amani. A vaccine may end the pandemic, but it won’t end medical mistrust or fix historic and contemporary systemic societal gaps.
“It’s no coincidence we’re having conversations about policing, surveillance, housing and vaccine hesitancy at the same time,” Dr. Amani says. “All of these issues are deeply connected and solving them is a continuation of the work we’re already doing.”
Learn more about COVID-19 research, clinical trials, operations and multi-disciplinary efforts at UCLA Health.