When her turn comes to take the COVID-19 vaccine, Sue is taking a pass.
“I’ve researched this so much for so long, I wouldn’t even consider this vaccine,” said the Madison woman.
“Probably the No. 1 reason I won’t get it is I have no fear of COVID whatsoever,” she said. “I’m very healthy, and I stay healthy through natural means like good nutrition, hydration and things like that.”
Sue, a white woman, was among those interviewed for this story who asked that their real names not be published for fear of reprisals.
“It’s not the time to be an anti-vaxxer,” said one.
Edward, a Black Madison man who works with youth, isn’t taking the shot either. Neither are his wife and daughter. He said the speed and urgency with which the vaccine was developed recalls the days of slavery when “doctors wanted to get us back and running and didn’t worry about our pain threshold as much as just getting us out there to make that money.”
Despite losing a cousin to the pandemic, Catherine is opting out as well.
“How do you know who to trust?” said the Dane County small business owner. “These drug manufacturers are the ones putting all the information out there that most journalists just take as truth. They say it’s science-based, but who’s paying the scientists?”
Public health officials, from top U.S. infectious disease specialist Anthony Fauci to local health departments and medical groups, say the vaccines have undergone rigorous clinical trials that prove that they’re safe and effective. And they’re pushing back against what they deem a flood of misinformation that could cause significant numbers to shun the needle.
Despite the scourge that has killed 400,000 Americans and infected more than 24 million, there are many who want no part of a vaccine that offers a possible path to normality, or are holding out until they can be convinced it’s safe.
Nearly 40% of Americans say they won’t take the vaccine or haven’t yet decided. That’s down from a high point of 50% in September, but still a looming concern for health officials who say immunization rates of 70% to 85% will be necessary to stamp out the disease.
“We really need to come together to combat this,” said Dr. Jasmine Zapata, pediatrician and public health strategist with the UW School of Medicine and Public Health. “And just like masks, social distancing and good handwashing are part of the solution, getting as many people vaccinated as possible is part of the solution.”
Holdouts worried about quick rollout
With no national or statewide strategy to deal with a level of vaccine skepticism that threatens to prolong the pandemic, a growing number of community groups, medical organizations and advocates, both nationwide and in Dane County, are springing up to fill the void, especially among communities of color where mistrust of the vaccine is especially entrenched. And that’s despite the fact that those communities have been hit disproportionately hard by COVID-19 in terms of case numbers and deaths.
“It’s a really deep-seated distrust,” said J.C. Dawkins, a former Wisconsin Badgers football standout who serves as outreach coordinator for the Black wellness group Rebalanced-Life Wellness Association. “As Black influencers our biggest job is to help educate and get people the actual information. Rather than just going on history, what they’re being told or what the common perception is, we need to get them the actual information where they can read through it and see that it’s actually safe.”
The reticence extends into the population of front-line health care workers, which was targeted for the first wave of vaccines and began receiving shots last month. Despite months of pleas to the public to practice mitigation strategies to alleviate the strain on beleaguered health care workers, health system managers are now contending with the disconcerting fact that nearly 30% of those workers are hesitant to take the vaccine.
“We certainly have some people who are declining or hesitant,” said Dr. Matt Anderson, medical director of UW Health primary care, though he added that vaccine-shy employees are a “very small percentage.”
Holdouts point to concerns over the unprecedented speed with which the vaccine was developed, fears that new technology will alter their genetics, what they see as misinformation from profit-hungry pharmaceutical companies, and a belief that the severity of the pandemic has been wildly overblown.
“There would be a lot less hesitancy out there if the manufacturers had liability. There is none at all,” said Catherine, referring to liability protections for drug makers for adverse effects caused by the vaccines.
She believes the severity of the pandemic has been overblown.
“I’m not sure that it’s this huge crisis anymore that it was made out to be,” she said.
But most commonly, skeptics are concerned about the safety of a drug that was developed and approved so quickly. On average, it takes about 12 years for a drug to make its way through the development and regulatory process. The first two vaccines took about nine months.
“It’s not only the racial aspect, but also the quickness with how they came up with it,” said Edward, the Black man from Madison who doesn’t intend to get the shot. “From my research, vaccines take years to be tested. It seems like it was very rushed. I get it, we’re in a pandemic and it’s very bad and getting worse. But there’s still a level of distrust.”
Even among health care workers, worries that the vaccines were not property vetted abound, UW Health’s Anderson said.
“We’re continuing to work through some of the questions that our employees have about the vaccine,” he said. “We’re certainly seeing people who have declined now, after having further conversations, have been educating themselves and decided to go ahead and get the vaccine.”
But some people won’t even consider it.
Anti-vaxxers on the right and left
Wisconsin United for Freedom was founded two years ago to fight a legislative proposal to curtail parents’ right to exempt their kids from required vaccinations. In 2020, the group’s numbers swelled to include more than 10,000 members, partners and affiliates, according to a representative of the group, who spoke on the condition of anonymity because of “negative feedback” she’s received in the past.
“We’ve seen rapid growth in recent months as people become more and more concerned with government overreach into health decisions in the home, and particularly vaccine choice,” she said.
The group is an amalgam of anti-vaccine activists from both the left and the right, including “very conservative people and very religious people that don’t like government interference, and very liberal people who are very into herbal medicine,” the representative said.
“We were founded two years ago under the premise that every individual and every family should be able to pick and choose for themselves based on their unique circumstances which vaccines to take,” she said. “We maintain that same stance with this one, but even more strongly now that this is a fast-tracked vaccine lacking long-term safety data.”
The vaccine has known side effects: fatigue, headaches, dizziness and nausea. But sometimes more serious medical issues emerge. After some 12 million doses administered so far, more than 6,700 people have reported symptoms to the CDC, and more than 200 people have been hospitalized.
Dr. William Hartman, the principal investigator for a UW Health clinical trial for a vaccine by AstraZeneca, said that while data is lacking, clinical trial participants are monitored closely. Volunteers are instructed to call a hotline to report symptoms or concerns, and they’re contacted regularly for evaluation.
“That gives us two months of pretty solid safety data,” Hartman said.
The AstraZeneca vaccine has been approved in the United Kingdom and is expected to win FDA approval in coming months.
Hartman maintained that no corners were cut in the development of the vaccines. The speed with which they were developed is largely due to the worldwide focus on ending the pandemic.
“Never before has there been a worldwide effort to stop one virus, one disease, like the effort to rid the world of COVID-19,” he said. “The money, the people power, the company focus, we’ve never seen anything even close to this effort.”
While the U.S. and other nations cut vast amounts of red tape to gain approval of the drugs, the clinical trial standards were rigorously adhered to, he said. In addition, those conducting the trials made a special effort to include people of color, who have traditionally been underrepresented.
“All of these trials have between 30,000 and 40,000 participants,” he said. “The Pfizer one has 44,000 participants. That’s no different than any other vaccine trial.”
What is different is the speed of the recruitment process that rounded up tens of thousands of volunteers for the trials, which would normally take two or three years. The COVID-19 vaccine trials, he said, have drawn volunteers motivated to help end the pandemic.
“No corners were cut there,” he said. “We do it the same way, it’s just been done on an accelerated timeline.”
As an example of the focus on safety, he pointed to the more than month-long suspension of the AstraZeneca vaccine trial in September after a participant in the U.K. suffered a rare spinal inflammatory disorder. Investigations were inconclusive as to whether the condition was related to the vaccine and the trials resumed in October.
After the illness was reported, Hartman said, the FDA reviewed each AstraZeneca participant in the world, as well as 10 years of data on the virus vector — a modified chimpanzee cold virus — used in the vaccine to trigger an immune response, before allowing the trials to continue.
“I think that all those together should show the public that the government and the FDA takes safety very seriously,” he said. “It would have been a lot easier to just restart the trial and get as many vaccines available as possible, but we didn’t do that.”
The Pfizer and Moderna vaccines have come under scrutiny because they use a new technology, messenger RNA (mRNA), instead of the typical virus vector used in the AstraZeneca vaccine.
The timing was right to get those vaccines developed quickly, Hartman said. The mRNA vaccines have been in development since 2003, when scientists were developing a vaccine against the more deadly SARS-CoV-1 outbreak that spread from China to other countries before it was stamped out in 2004.
“The wheel was not reinvented with any of these vaccines,” he said. “While these are new vaccines for (COVID-19), they’ve been built on technology that‘s been around for 17 years,” he said. “It’s using technology and platforms that were already available, and we were able to build on those.”
Health experts answer concerns
Some COVID-19 vaccine skeptics fear that the new technology could alter DNA, the building blocks of our genetic code, in the nucleus.
“It’s experimental vaccine technology,” said Sue. “It literally changes our DNA, and there’s no way I would change my DNA with a vaccine.”
Health experts say that argument is incorrect.
According to Dr. James Conway, medical director for immunization programs at UW Health, the mRNA in the vaccine instructs people’s protein-making machinery to produce “spike proteins.” The spike proteins trigger an immune response specific to the virus that causes COVID-19. And then the mRNA disappears.
“The mRNA break down really quickly once they arrive, and it’s a one-way process,” he said. “The mRNA molecules in the vaccines can’t go backwards into the cell nucleus and don’t interact with DNA at all.”
Some who said they don’t intend to take the vaccine acknowledged the potential backlash for putting others at risk. But they say there’s no proof that the vaccine will be effective enough to quash the virus.
“It’s dangerous to go down this path saying that every person must do this in order to protect another person, and we don’t even know if that’s the case yet,” said the Wisconsin United for Freedom representative. “There’s so many unknowns yet with this vaccine. We don’t know the duration of protection yet beyond a two-month trial. We don’t know its effectiveness.”
In fact, the companies producing the vaccines have released data on their efficacy. The rate for preventing illness for the vaccines range from about 70% for the AstraZeneca vaccine to 95% for the mRNA versions from Pfizer and Moderna. But while that means that some who receive a vaccine will become ill, Hartman said, they won’t be as severely afflicted as they could be if they had no vaccine at all.
“It’s 100% effective against severe disease and hospitalization,” he said. “And that’s a very important endpoint.”
Health officials and advocates say they’re confronting the wave of skepticism with unvarnished information to help those on the fence make up their minds.
“My personal approach is to not try to guilt people or scare people into getting the vaccine,” said Zapata, the UW Health physician.
Instead, she talks with her patients, community members and participants in online forums, listens to their concerns and offers them information based on those concerns. She also plans to appear on statewide public service announcements to help nudge people along.
“My goal is to get them to the next base,” she said. “Maybe after my conversation they’ll see a TV commercial that will help get them to second base. Then next they’ll talk to a friend and go to the next base. If I can move them closer to that ultimate goal, then I’m happy with that.”
Getting them to the next base is particularly difficult in the Black community, in which medical outrages like the Tuskegee syphilis study are etched into the collective psyche. The unethical 40-year research study that ended in 1972 involved hundreds of Black men with syphilis who were told they were being treated, but who were unknowingly denied medication so doctors could observe the progression of the disease.
“Black people, we’re very good at forgiving, but we’re even better at not forgetting,” said Will Turner, a 46-year-old Black man from Sun Prairie who hasn’t decided whether to get the shot. “When it comes to the histories of medicine and the treatment of Black people in this country, I think it makes it difficult for a lot of people to trust a vaccine that’s being pushed through so quickly.”
Hopes for a ‘ripple effect’
Shiva Bidar, UW Health’s chief diversity officer, stressed that the vaccine has only been around for a few weeks, and it won’t even be available to the general public for several months.
“I think how people feel about the vaccine is going to be looking very different in six months,” she said. “The amount of information, the number of people you know that are getting the vaccine, over time the conversation is going to look different.”
Bidar said she’s developing a plan to open lines of communication with leaders in Black, Latinx, Hmong and Native American communities. She recently joined medical representatives at Mt. Zion Church, one of the state’s oldest predominantly Black congregations, to talk about the vaccine, and she’s working with Public Health Madison & Dane County to produce “culturally and linguistically relevant” materials to distribute to targeted populations.
She’s hoping that winning over a few will cause a ripple effect, with friends and families following the lead of people who have decided to get vaccinated.
“We all know that one of the most trusted sources of information and decision-making for people are people within their own social circles,” she said.
That’s something Aaron Perry knows a lot about. The founder of Rebalanced-Life Wellness Association, which he runs out of the city’s largest Black barbershop, JP Hair Design on the west side, is talking a lot about the vaccine.
“We were hoping that the medical community would not wait until the vaccine was here then try to figure out how to get people vaccinated, but that’s exactly what happened,” Perry said. “So we decided as an organization to get more proactive and get out there and put the message out ourselves.”
He already had a forum. In March, when the state first issued a stay-at-home order, the barbershop closed, taking away his venue. Like many others, he turned to the internet, creating the virtual support group Black Male Mental Health and Well-Being. Through that group he kept his members informed about the disparate numbers of Black men suffering severe illness and death from COVID-19.
Within a few months he had thousands of viewers from 32 states and countries that include Switzerland, Haiti and Canada. He’s also organized groups in which Black men can exercise in a socially distanced atmosphere, maintaining bonds that might otherwise have withered during the pandemic.
“Doing those support groups, we were able to really establish trust,” he said. “And now we’re just tapping into that with a positive message to encourage people to take advantage of the vaccination.”
His group also is enlisting the help of “elders,” mentors and mainstays in the community, to sign onto a campaign to encourage vaccinating.
“Once the elders sign off on this it is highly likely that the majority will follow,” he said.
He thinks his efforts are already paying off.
“We’re still hearing guys say that they are not interested, they’re not going to take it, but we’re hearing more of our men stating that as soon as they can get more information they intend to take the vaccine,” he said. “It’s progress because we’re tapping into the relationships that we have with one another.”