When Emma Wilson was first diagnosed with neuromyelitis optica 30 years ago, her doctor gave her a stern warning. “Never get any vaccine,” the doctor said without elaborating. “Absolutely never, ever get a live or dead vaccine injected into your body.”
The warning stuck. That's why Wilson, now 68 and dealing with impaired vision and mobility due to her disease, was surprised when her neurologist asked during a virtual checkup if she'd been vaccinated for the flu, shingles, and COVID-19.
Recalling her former physician's words, Wilson, a retired nurse, replied that she was not supposed to get vaccinated for anything. Her neurologist, Dina Jacobs, MD, clinical director of Penn Medicine's MS and Related Disorders Center in Philadelphia, assured her it was fine to get vaccinated, especially against COVID-19.
Wilson was stunned and asked for time to think about it. Still skeptical, she decided to do a little research. She found an article on Penn Medicine's website that said the same thing: People with her condition, and just about any other neurologic disorder, can and should get vaccinated against COVID-19 as soon as possible.
“I weighed it in my mind,” Wilson says. “Did I want to get this disease, or did I want to get a shot and try to prevent it? I'm not ready to take a chance on dying.” She has since been fully vaccinated and persuaded her three adult children to get immunized too. “They didn't want to, but I talked them into it,” she says. “I told them I wouldn't mind having been in lockdown for all this time—no Christmas get-together, no hugs—so long as we all still have a lifetime ahead of us.”
As the COVID-19 vaccine has become widely available, more and more people have been amenable to getting it. In December 2020—the month the vaccine was introduced, though largely limited to medical personnel and older adults—almost three-quarters of adults told pollsters they were either unwilling to get vaccinated or undecided. By March 2021, when eligibility for and availability of the vaccine were expanding significantly, only one-third of adults felt that way, according to a national poll by the Kaiser Family Foundation. By mid-April, more than 125 million Americans had received at least one dose of a COVID-19 vaccine, according to the US Centers for Disease Control and Prevention (CDC).
Unfortunately, vaccination rates have lagged among people of color—who are at greater risk than White people of getting severely ill or dying due to COVID-19. About 55 percent of Black adults and 61 percent of Hispanic adults in the Kaiser survey said they had been vaccinated or plan to be soon, compared with 64 percent of White respondents.
People have various reasons for avoiding the COVID-19 vaccine: They may not personally know anyone who has been very sick or died from the virus; they don't think they're at risk of exposure to the virus if they don't work in a hospital or live in a group setting; they're making a political statement; they are worried by reports of blood clots in people who received the Johnson & Johnson vaccine. But the benefits are overwhelming, according to Walter J. Koroshetz, MD, FAAN, director of the National Institute of Neurological Disorders and Stroke in Bethesda, MD.
“The risk of being hurt by COVID-19 is so much higher than any risk from the vaccine that there is hardly anything that should prevent you from getting vaccinated,” Dr. Koroshetz says. “Any risk from the vaccine is minuscule compared to the risk of getting COVID-19.”
Statistics from the CDC bear this out. Once you have been vaccinated, your risk of dying from COVID-19 is less than one in a million. By comparison, the overall risk of dying from COVID-19 among people who haven't been vaccinated is one in 589. And the risk is even higher for older adults (the older you are, the higher your risk) or those who have serious medical conditions, including many neurologic disorders.
Safe and Effective
The COVID-19 vaccines offered in the United States—which are made by Pfizer, Moderna, and Johnson & Johnson—do not use live or dead virus, so people cannot catch the disease from them. As the CDC has explained in addressing possible concerns, the vaccines cannot alter DNA or enter the cell nucleus where DNA resides. And they do not cause cancer.
Another concern is that the vaccines were developed too quickly. “Scientists have been working on vaccines like this since the SARS outbreak in 2002,” says Nina Harawa, PhD, an epidemiologist at UCLA's Fielding School of Public Health, who has been talking to groups around Los Angeles about the vaccines. “People think it took less than a year to develop and test the COVID-19 vaccines, but it was actually based on work over 18 years.”
Dr. Harawa also points out that tens of thousands of people participated in the clinical trials of the vaccines' safety and effectiveness. Much of the bureaucratic red tape typically involved in bringing vaccines to market was suspended because of the urgency of the situation, she adds.
No life-threatening reactions or deaths were known to be directly caused by any of the vaccines until the CDC and the US Food and Drug Administration learned on April 12 that six women who'd received the Johnson & Johnson vaccine had developed cerebral venous sinus thrombosis, a blood clot in the brain.
Distribution of the Johnson & Johnson vaccine was paused for two weeks as researchers investigated the problem. They reported that a total of 17 people—mostly women between the ages of 18 and 59—had developed the rare clotting disorder, and three of them had died. Most of the people were in their thirties, and a majority were found to have low levels of blood platelets—which meant that the standard treatment, the blood-thinning drug heparin, worsened the condition. (Other safe treatments are available.)
In lifting the suspension of Johnson & Johnson's vaccine, the CDC noted that nearly 8 million people had received the vaccine without incident and that developing a blood clot due to low platelets is extremely unlikely. The agency recommended that people be alert to possible side effects within three weeks of receiving the vaccine, including severe headache or backache, blurred vision, fainting, seizures, or intense pain in the abdomen or chest.
Countering Fears
In a December 2020 survey by the Kaiser Family Foundation, many Black respondents said they wanted to “wait and see” before getting vaccinated. Reasons for that hesitancy can vary, says Jeffrey C. McClean II, MD, FAAN, associate professor of neurology at San Antonio Military Medical Center in Texas. In his experience, they include concerns about side effects and missing work, not being able to get the vaccine from a place they trust, and not having transportation to a site.
Reluctance in the Black community is not irrational, says Dr. Harawa. She cites historical precedents, including the US government's infamous Tuskegee study, conducted from 1932 to 1972, that observed Black men who had syphilis without telling them they had the disease or offering treatment.
“The mistrust is pretty well-earned when you look at the way the medical systems have neglected people who needed care and experimented on them instead,” Dr. Harawa says. “Often there aren't health care providers who are culturally sensitive to dealing with [diverse] populations. They might not even have interpreters for people who don't speak English.”
Nonetheless, Dr. Harawa says getting vaccinated is especially important for Blacks and Hispanics because those groups have suffered disproportionately from COVID-19. According to a Stanford University study published in Circulation in 2020, Black and Hispanic people accounted for 58 percent of COVID-19 hospitalizations and 53 percent of COVID-19 deaths during the first six months of 2020, even though they make up only about 32 percent of the general population.
Since March, the number of Black and Hispanic adults getting vaccinated has steadily increased, according to the Kaiser survey, which suggests that wariness can be overcome, says Dr. McClean.
With the racial disparity in mind, Jose H. Posas, MD, FAAN, a neurologist at the Ochsner Medical Center in New Orleans, makes a personal appeal to his Latino patients. “I tell them I've had the vaccine, it's helped me, it's not a government plot to affect our ethnic group,” Dr. Posas says.
Many neurologists are hearing politically based objections. “One patient told me he's never taking the vaccine, because he doesn't trust the government,” Dr. Posas says.
Victoria Pelak, MD, FAAN, a neuro-ophthalmologist at the University of Colorado School of Medicine, says a patient told her, “With all the politics that have been involved, I am having a hard time believing what I hear about safety.”
A focus group conducted by Gallup suggested that the most persuasive messages may be those that come from patients' doctors and are personal and apolitical. Doctors can communicate that the vaccines are the best way to protect friends, family, and community against COVID-19.
Some doctors find they have to correct rumors about the vaccines that are spread on social media. Dr. Jacobs, for instance, had a patient who said she thought the vaccine would prevent her from getting pregnant after her sister saw something about it on Facebook. Dr. Jacobs explained that the vaccines have had no ill effect on fertility or pregnancy among participants in the clinical trials or in the millions of people who have already been vaccinated. “There is so much misinformation out there,” she says. “It's critical that patients share their concerns with their doctors, so we can understand them and address them in a nonjudgmental and respectful manner.”
Dr. Posas agrees. One of his patients was worried the vaccine would worsen her migraine attacks. Jennifer Membreno has about three migraines a month on her current medication, though she's had as many as 25 per month in the past, and she wondered if the vaccine would increase her headache frequency or severity. With the doctor's encouragement and assurance that he would tend to any problem she might have after the vaccine, Membreno, 25, decided to get vaccinated. “I haven't noticed any increase with my migraines,” she says. “I'm happy I spoke with Dr. Posas and that he reassured me.”
Read More
