The first days of the COVID-19 vaccination in Lithuania were tense but full of enthusiasm. Yet this will not last forever. A significant part of the population is suspicious of vaccines or refuses them outright. Where does their mistrust come from?
The World Health Organization is adamant that vaccinations should not be mandatory and the authorities should “present people with data” to make up their own minds. But doctors and experts working with childhood vaccinations know from experience – people read data in wildly different ways. Various websites and groups opposing vaccination do refer to science but interpret it against the scientific consensus.
The pandemic has expanded our scientific vocabulary. Many of us can now discuss the R number and antibodies at the dinner table. But the way scientists speak can confuse people who search for clear and direct answers. When research does not find evidence of a link between two phenomena, does it mean the link is absent? And what does the lack of statistical significance mean when individuals see – or say they see – clear cause and effect in their own and their children’s bodies? To interpret science, most individuals need someone to help them make sense of it – a doctor, a community leader, or, increasingly, an online influencer. In the latter case, they can become vulnerable to misinformation.
According to Jonathan Kennedy, senior lecturer on global public health at Queen Mary University of London, there is one group – in between proponents and opponents – that may be particularly vulnerable. “It's useful to think of attitudes to vaccines as a kind of spectrum. You have this big group in the middle of ‘fence sitters’ [or ] ‘persuadables,’” Kennedy said.
This group in the middle might be the most vulnerable to disinformation because they are trying to find out what information is right for them. Kennedy says, “(They) have got information from both sides, and they're trying to work out what's the best for them.”
“Dr. Google is very good. A lot of good science-based information can be found there. However, there is ample misleading information, too. Especially about vaccinations,” says Sigita Burokienė, a doctor at the Children's Admission Emergency Department of Santara Hospital. In her work, she makes urgent decisions on the treatment of seriously ill children and passes these skills on to Vilnius University students – future medics. If a child with a meningococcal infection enters the ward, the team may need to amputate the child’s fingers, hands, or feet, and not a year goes by without deaths In Lithuania (five in 2018 and six in 2019). However, even in the face of such a threat, some parents believe that the vaccine against the disease, included in the vaccination calendar since 2018, is more dangerous than the disease itself. “One would think, why risk your child’s health? About one-fifth of parents think that their child will not get a meningococcal infection, and in fact it is very easily spread,” Burokienė says.
About one-fifth of parents think that their child will not get a meningococcal infection, and in fact it is very easily spread.
In addition to her work in the treatment of serious pediatric diseases, Burokienė also participates in the Pediatric Committee of the European Medicines Agency (EMA). This agency approved the first vaccine against COVID-19 in the last days of December and two more in January. "The pandemic has shown why vaccinations are important," she says. When examining plans for the development of new drugs in the EMA Committee, she is well aware of ingredients with names that frighten some parents. "Naturally, the human body contains a certain amount of formaldehyde, many times higher than can be found in vaccines. People are also afraid of aluminum, so efforts are being made to produce new vaccines without the use of aluminum, but […] its content [in vaccines] is many times lower than what is obtained with food. Only safe so-called additives can be included in the vaccines,” she says. However, her scientific arguments are not convincing to everyone.
There are currently 10 vaccines in the preventive vaccination calendar for children under 16 years of age (full calendar here). The 2019 measles outbreak showed that the coverage of one of them – the measles, rubella, and mumps (MMR) vaccine – was insufficient. As many as 297 cases per million occurred in Lithuania, the worst figure in the EU. The majority of patients were adults (638), including 105 health care workers. Most adults were unaware of their vaccination status. According to a report by the Center for Communicable Diseases and AIDS, nearly a third of the patients had complications and had to be hospitalized.
According to the WHO, children under five are the most vulnerable to measles complications and may experience pneumonia, encephalitis, permanent brain damage, and death. The virus also harms the body’s immune defenses. In 2019, 59 children under four years of age were hospitalized with measles in Lithuania (out of 131 who caught measles). Fearing the virus, over 23 thousand adults got the vaccine – many using their own funds, as the MMR vaccine is covered by the state only for adults who have had contact with a measles case. Across the EU, two babies and a child under four died from the virus.
Among those suffering from measles was the daughter of a friend of Aliona from Vilnius, who has not had three of her four children vaccinated. “Then I realized: wow, [measles] is close, it could happen. But that I would think about myself that way, or about my family? It didn’t seem and still doesn’t seem to me that measles is a very serious disease for children. If my children got sick, I think they would get over it. I was not afraid for my own or my family’s sake,” she said in an interview at the end of May.
According to researchers, as many as 95% of children need to be vaccinated to protect the whole of society, including babies who cannot yet be vaccinated. Lithuania achieved this level (according to EU Health data) in 1996 and retained it until 2010. Vaccination rates then dropped below what is known as the herd immunity level. According to a survey by the State of Vaccine Confidence in the EU 2018, 78% of Lithuanians trust the safety of this vaccine.
In order to protect society from measles, 95% of children need to be vaccinated. Lithuania achieved this level in 1996. But since 2010, the vaccination rates have dropped.
Aliona followed the vaccination calendar during her first child’s first months. However, her child started experiencing recurring allergies, which began to raise questions for her. “I’m not one of those moms who would say that vaccinations promote autism or are directly related to allergies, but I think allergies, like cancer, are an autoimmune disease, and since vaccinations are such an invasion of, say, the human immune system, it’s the kind of connection that could possibly be there. I’m not saying that was the case with our child, but that was one of the things that made me wonder: what would it have been like if we hadn’t vaccinated? Maybe everything would have been easier? And when the second child was born, I, too, had such a suspicion that he might be allergic, judging by his digestive development. Instead, that previous experience signaled to me that maybe this child shouldn’t be vaccinated after all. That was one of the reasons."
It may be terrible to watch your own child suffer, but on a global scale, severe side effects are rare and temporary, Paul Offit, a pediatrics professor in Philadelphia, told Scientific American, pointing out that his own daughter had a seizure following vaccination. Vaccine trust expert Heidi Larson says that scandals related to health care etch themselves into people’s memory for a long time, as happened with pandemic flu vaccines in France over a decade ago, and erode trust. Research shows that trust issues are not addressed by more information and health literacy.
In 2019, according to a Eurobarometer survey, only 30% of respondents in Lithuania stated that in the last five years they or their family members have been vaccinated against something – this is one of the lowest indicators in the European Union. Among those whose families were vaccinated, more than half responded that family doctors advised them to do so. According to various experts, a warm and trusting relationship with the family doctor is crucial for the population's confidence in vaccinations.
Raising her first child who suffered from allergies, Aliona lacked a warm and trusting relationship with the family doctor she was using then. “Interacting with him, I always felt like such a silly mommy, until I was pregnant again and got ridiculed about something vaccine-related, and I left [the doctor]. I shifted to another."
To help her make a decision about vaccination, Aliona went to a lecture given by her new family doctor. “That was by no means a lecture for or against vaccinations, [but] from that lecture, it seems to me, everyone who attended came out confirming their predispositions. I realized that there would be no single answer about this, that there will always be pros and cons, and I have to put together arguments for myself and decide just like that. For me, maybe that lecture was a turning point when I decided that there are more arguments against [vaccination],” Aliona recalls.
“Children are not identical. Not all have the same health or the same illnesses. Even if we consider the flu, some will experience it more severely, others more mildly, even if they are family members. It is very risky to draw conclusions from one case,” says Burokienė, who treats children experiencing severe illnesses. “Indeed, someone may have some negative experience or a worse than usual reaction and say, I’m not going to give them any more vaccines. But that wouldn’t be right.”
According to Erica Weintraub Austin and Porismita Borah, misinformation that targets worried parents shapes their decisions by appealing to their emotions: confidence, perceived threat, empathy, and worry. To enter into dialogue with vaccine-hesitant people, they suggest avoiding scare tactics and building empathy. Members of vaccination discussion groups on Facebook and Telegram already know Vainius Volungevičius, creator of the Ar tikrai (“Is that so?”) YouTube channel, who patiently, but without giving ground, engages with anti-scientific statements. "This topic has reared its head elsewhere too, in vegan/vegetarian and similar groups. What gives me comfort is that not only [committed antivaxxers] are reading it online. There are also the doubters and the like," he says. In one of his videos he says that we do not stop relying on ambulances because they sometimes cause accidents.
Aliona says she believes in a hierarchy of disease threats and would vaccinate her family against some diseases, including possibly COVID-19. Meanwhile, Dalia from Vilnius (name changed at the request of the interviewee) holds the view that Western medicine is generally ineffective and medical interventions should be avoided as much as possible: “I only buy band-aids or peroxide at the pharmacy. I don’t need drugs. I don’t need any medication or doctors. Maybe we do a blood test once a year, but in reality, it costs nothing to have strong immunity. You just need your willpower to maintain a healthy, balanced life and diet, to balance your work and rest regime, to enjoy active leisure,” she said in an interview in June. "And now we hear that a vaccine or a drug will save us from the coronavirus, but I don't hear about how to boost immunity, no information on what to do, how to protect ourselves."
A number of health-related norms is indeed subject to debate, and most health advice suggests that the immune system is strengthened by long-term habits like exercising, getting fresh air, and maintaining a healthy diet. Still, infections routinely break through the body’s defenses, and in the case of COVID-19, there is no cure, only treatments that can relieve symptoms, according to the WHO. Currently, three vaccines have been approved by the European Medicines Agency, which indicates that, based on available data, they are safe and effective for public use.
The high rates of immunization during the Soviet era were due to politically driven immunization programs, according to a 1997 paper on Soviet immunization policies, in which Steven L. Hoch analyzed how the Soviet leadership used mass immunization programs in the 1950s to strengthen state authority. Vaccination campaigns were “labor intensive and thus highly visible state coercive pressure” as trained nurses visited each baby at home. With many therapeutic facilities underfunded, the USSR gave very high priority to preventive medicine. A significant share of physicians’ working hours was dedicated to visiting and educating parents. Hoch predicted that post-Soviet successor states will not be able to afford such labor-intensive campaigns and will have to rely on a more individualized and voluntary approach.
Only 30% of respondents in Lithuania stated that in the last five years they or their family members had been vaccinated – one of the lowest indicators in the EU.
In Lithuania, Hoch’s predictions currently ring true. “It is likely that the routine historic system does not meet new challenges like increasingly negative attitudes towards vaccination in society and the increasing mobility of the population,” Liubovė Murauskienė wrote in a 2018 report for the European Observatory on Health Systems and Policies. She also pointed out that when general practitioners replaced pediatricians, a strong knowledge base on childhood diseases and vaccinations was compromised.
Klaipėda University’s survey of Tauragė district residents, released in the journal Public Health, shows that only a quarter of the rural population had their children vaccinated according to the calendar (in contrast to two-thirds of town residents), and 43 percent did not vaccinate children at all. One-third were vaccinated with only some vaccines. When researchers asked about the reasons for children not being taken to get vaccinated, half of the respondents in the rural population said they were advised by friends or relatives not to. But the opinions of other non-specialists were decisive only for every hundredth town resident – most of them (15%) said that they wanted their children to naturally develop immunity against the diseases that vaccines protect against.
Dalia is convinced that a vegan diet, an active lifestyle, compresses, and essential oils will be enough to protect her children from illness. She calls herself a proponent of Antoine Bechamp's theory on life surrounded by microorganisms and the idea of natural immunity derived from it. She discovered this theory after conversations with classmates at a course for expectant mothers. Several of the participants as well as her employer and a neighbor admitted to not getting their children vaccinated. "These are people who are role models to me – educated, enlightened, well-read people. I was wondering why they choose not to vaccinate their children and why they don’t talk that much about it, express it, or share it with me, say it, and share it with me. Well, I became naturally curious,” Dalia recalls. She is raising two unvaccinated children.
“We certainly see in the media in the UK that the kind of people who are skeptical towards vaccines [are seen] as crazy or ignorant cavemen or cavewomen, but a lot of people are just in the center. They got information from both sides, and they’re trying to work out what’s best,” says Kennedy, who researches links between anti-vaccination sentiments and populist politics. In his book on perceptions of risk, Dan Gardner noted that humans have an instinctive fear of contamination (of water sources in early societies) – even when today science can tell us what is, rationally, safe for us. This concern prompts some people to seek any information that confirms their worries.
As more parents find figures of authority online, the state has recently attempted to exercise its muscle: after the 2013 measles outbreak, the scale of which did not match the larger one in 2019, Vytenis Andriukaitis, who was Lithuania’s minister of health at that time, issued an order requiring the presentation of a vaccination certificate when admitting children to educational institutions. This order would have entered into force only in 2016, giving the Seimas (Parliament) time to adopt the relevant legal acts. However, the new order outraged both opponents of vaccination as well as those who believe that the state should not regulate such things in principle.
At first the Office of the Equal Opportunities Ombudsman (LGKT) received more than 20 complaints that the new policy violated the religious beliefs of vaccine opponents. LGKT rejected all complaints and successfully defended its position in court. After a year the number of complaints to LGKT rose to 64. The Seimas did not dare to pass a law that would provide a basis for the minister's order.
Then, four members of the Seimas appealed to the Supreme Administrative Court of Lithuania. Dangutė Mikutienė and Gintaras Tamošiūnas were from the Labor Party. The other two were Aurelija Stancikienė (the Way of Courage Party) and liberal Vitalijus Gailius. In 2016 the court ruled that the order violated the principle of the rule of law. The election was won by the Lithuanian Peasants and Greens Union, divided on vaccines. The party promised to educate, not to oblige.
During that time, measles vaccination rates decreased. They reached their lowest levels in 2018. Asked how he felt about blocking the order, Gailius, a (neo)liberal politician, said he was all for vaccination, but as a lawyer, he was convinced that it cannot be an obligation. “We would need to change the constitution to have it otherwise,” he said in a phone interview.
Soviet leadership used mass immunization programs to strengthen state authority.
The previously mentioned Klaipėda University’s 2016 survey in Tauragė district showed that the requirement to submit a vaccination certificate in education institutions was favored by two thirds of urban residents. Rural residents were more likely to support parental choice, to believe that pharmacists demanded such a policy, or not to have an opinion on the issue at all. Only one in nine supported the obligation.
As the 2020 elections approached, public broadcaster LRT asked electoral candidates to declare their position on compulsory vaccination in educational institutions. Ingrida Šimonytė, the current prime minister of Lithuania, stated in the TV debate that vaccinations are not just a matter of personal freedom and whether or not people get them should be based on what scientists advise.
Aliona and Dalia, Vilnius residents who did not get their children vaccinated, said that they mostly avoided public discussions. But if mandatory vaccination is again on the table, they said they would sign petitions and take part in protests. Aliona says she does not strongly identify with other people who actively appear in circles of vaccine opponents. "Even if we have the same approach to vaccines, I don't necessarily agree with their arguments. My argument for not getting vaccinated may be different from what they say there. I decided some would always be for and some would be against this. I had already done that work once, delved into it as much as the circumstances, my intelligence, and sources I had at the time allowed me, and decided this way. Maybe something will happen in life that will make me reconsider [my position].”
Though many voices say that education is better than obligation, few have a clear idea of how people respond to attempts to educate them. “I conducted a survey of scientists in 2016-17, which measured how Lithuanian researchers understand science communication. One of the main goals [they pointed out] was the transfer of information, not establishing dialogue, not, so to say, taking the temperature of public opinion, but the transfer of information,” warns science communication researcher Austė Valinčiūtė, whose PhD thesis tackled vaccine coverage.
“Providing dry facts can have a boomerang effect. What we need in Lithuania, speaking of science communication and vaccines, is an understanding of the parents who are against vaccination, an understanding of their opinion and arguments, and an understanding of those on the edge. I think this group is very, very important.”
Data from a survey by the Lithuanian Social Research Centre show that, as of December, around a quarter of residents did not plan to take the COVID-19 vaccine. This number is approximately the same as in July, when safety data of the vaccines in development were not yet released. Some respondents said they do not trust vaccines in general or feared their side effects. As many as one in ten doubted the existence of the virus altogether. There is still a dearth of social research on this topic, but it looks like the doubts that began in parents’ groups and social networks will influence the way Lithuania manages to control this deeply transformative pandemic.
Daiva Repečkaitė and Eva von Schaper are jointly investigating anti-vaccination trends in Europe. Their findings can be found in articles in various languages, as well as their podcast, The Inoculation.