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How a Muslim community overcame disinformation linking vaccines to autism

When health officials in Minnesota were confronted by the biggest outbreak of measles in decades, they knew that earning the community’s trust would be crucial.

The section of the community most affected by the outbreak that eventually infected 79 people, the same as for the whole of the US in any average year, were Somali Americans. The vast majority were children under 10 who had not been vaccinated.

The state’s Somali Americans used to vaccinate their children more than other Minnesotans, but the rate fell, between 2004 and 2014, from 92 per cent to 40 per cent. Officials have linked this to visits paid to the community by anti-vaccine activist Andrew Wakefield and other campaigners, whose influence still reverberates.

“The biggest impact is connecting a condition that is one that challenges any parent who has a child with autism, and connecting that to immunisations, and specifically MMR,” Lynn Bahta, the immunisation clinical consultant with the Minnesota Department of Health (MDOH), told The Independent last summer as it fought to tackle the outbreak.

“Among our Somali American community we have their rates go from 92 per cent, which was higher than non-Somali rates, down to 42 per cent. And that puts them in a very, very vulnerable position.”

To help the state get its message delivered most effectively, officials asked for help from community leaders, in particular imams, who lead prayers at neighbourhood mosques.

Bahta said they told them that the MDOH does not believe that the information being given to them by Wakefield and others was true. She said the community was particularly vulnerable as it already believed there was a higher rate of autism among Somali American boys, something officials in the state say is not supported by data. In the end, more than 30 agreed to help.

“The imams are very concerned about their community and they are very willing to work with us in whatever way they can. They have appreciated the information that we have been able to give them about the outbreak and what they can do as spiritual leaders of the community,” Bahta said.

She said the imams provided officials with direct access to the community. In addition, she said the imams could “bring disease and prevention of disease within the context of their faith. That is something that we don’t have the words for, but they do”.

The outbreak of measles in the Twin Cities (Minneapolis-Saint Paul) was the worst the Midwest conurbation had witnessed for years. But it was not alone in having to confront the problem.

In 2015, around 150 people were infected, the vast majority of them residents of California, after they visited one of two Disney theme parks located in Orange County. The vast majority of those infected were believed to have not received the MMR vaccine, or to have only had one injection (the recommendation is two).

Earlier this year, at least six people in Ellis County, Texas, were infected with the disease, all of them people who had not been vaccinated. Texas is one of the 19 states in the US that does not have a law that requires people to get vaccinations, and since 2003, parents have been able to opt out of public school vaccine requirements if it goes against their “conscientious” beliefs.

In addition to being the home of Wakefield, the state is the base of Texans for Vaccine Choice, a political action committee that supports political candidates who promote doubts about vaccine safety.

After moving to Texas in the early 2000s, Wakefield headed up the Thoughtful House Centre for Children, in Austin, between 2005 and 2010, when he resigned ahead of losing his UK medical license. The group subsequently changed its name to the Johnson Centre for Child Health and Development.

Reports say he then established the Strategic Autism Initiative, which he ran with Polly Tommey, a British mother whose son has autism. Tommey helped produce Wakefield’s film, Vaxxed, which seeks to claim there is a link between autism and vaccinations. Dr Peter Hotez, dean of the National School of Tropical Medicine at the Baylor College of Medicine in Houston, told the Huffington Post that since 2003, the number of parents conscientiously objecting to having their children vaccinated rose from 2,314 to 52,756 for the 2016-2017 school year. That did not include data about children who are schooled at home.

“Texas has seen a 20-fold increase in non-medical vaccine exemptions since 2003,” said Dr Hotez. “That means we have some schools with 20 to 40 per cent of the children not being vaccinated.”

Underscoring the danger that unvaccinated children pose to the wider community, a study published last October in the Journal of the American Medical Association (JAMA) concluded that people who did not get vaccinated were “the most likely reason” for the steady increase in the rate of measles and major outbreaks in the US.

In Minneapolis, among those who ignored the experts was Suaado Salah, a young mother whose three-year-old son and 18-month-old girl were not vaccinated and who subsequently contracted measles. She said her daughter, who had a rash, high fever and cough, had to spend four nights in hospital where she was treated with oxygen and intravenous drips.

“I thought, ‘I’m in America.’ I thought, ‘I’m in a safe place and my kids will never get sick in that disease,’” the 26-year-old told the Washington Post. She said growing up in Somalia, she had measles as a child, and her sister died of it.

But since her children fell ill, she and her husband have become advocates for vaccines.

“When the kids get sick, it’s going to affect everybody. It’s not going to affect only the family who have the sick kid,” she said. “They make everybody sick. That’s when you wake up and say, ‘Okay, what happened’. ”

One of the imams who was central to the state’s response to the outbreak was Sharif Abdirahman, the Muslim leader at the Dar al Hijrah mosque in the Cedar-Riverside neighbourhood of Minneapolis. He said he was able to appeal to people using both religion and science. He could also appeal as a parent.

“Islam is a religion of expertise,” he said, sat in the second-floor office of the community centre that also contains a mosque.

“Verses in the Quran say ... if you don’t a know subject ask the advice of people who know the subject very well.”

He said that several years ago, Wakefield had come and spoken to members of the community.

“I think the impact was very, very, very severe because he linked MMR and autism and because of that the Somali community feared the MMR,” he said.

“I think that before Andrew visited the Two Cities, Somali parents vaccinated their kids at around 90 per cent. But right now it’s 40, and that shows the fear’s impact and because of that you see a measles outbreak in the state of Minnesota.”

Abdirahman said the public response had varied mosque to mosque. But in his, people had reacted mostly positively to the message he was trying to spread.

Andrew Wakefield stuck off the UK medical register (Andrew Buncombe)
Andrew Wakefield stuck off the UK medical register (Andrew Buncombe)

“They are receptive and they ask more questions,” he said. “They have the right to ask these questions because there is a lot of fear, even though they know me.”

Officials said Wakefield’s film, Vaxxed, was screened by anti-vaccine campaigners on a number of occasions.

Wakefield, 61, was in 2010 found guilty by the UK’s General Medical Council of three-dozen charges including dishonesty and abuse of children, shortly after The Lancet medical journal retracted the 1998 study on which his claims about the MMR (measles, mumps, and rubella) vaccine were based. The magazine’s editor said at the time that statements in the article “were utterly false”.

Ten years earlier, he had moved to the US where he has become a leading figure within the anti-vaccine movement, and had a 45-minute meeting with in the summer of 2016 with Donald Trump, who has claimed there is a link between vaccines and autism, despite such a link being denied by the US’s top national health body and more than a dozen research papers.

Speaking to The Independent in Kansas City, Wakefield, who is believed to have visited Minneapolis at least three times between 2010 and 2011, said he had gone there to speak to parents who were worried about their “exquisite risk” at contracting autism from vaccines – something health officials in the state say is not borne out by data. He said: “They had a problem and they asked me to help.

“We have been showing the film to anyone who wants to watch it. We’ve not been specifically showing it to people of colour. So the implication that you’ve put forward is wholly unjustified. The film was shown to any who chose to show up. We did not target any particular audience. Let me make that clear,” he said.

“Secondly. I didn’t go to Minnesota to show it to any Somali population. As far as I’m aware, it was not shown to the Somali population at all, unless they chose to go and see it. So they were not targeted either.

“I’ve been to Minnesota to talk to the Somali population twice. I was asked go there to help set up a study to try and answer the question of why it appears that Somali children are at an exquisitely high risk of an adverse reaction, developing severe autism from vaccines ... That was the question I was asked to go and help solve by the Somalis … The data shows these children are at high risk.”

A year on from the outbreak, health officials in Minnesota said they were still conducting a formal evaluation of the incident and its response. They said they remained convinced Wakefield’s visit to the state and his interaction with the Somali community was a factor in the failure of many to get their children vaccinated.

“Perceptions about the prevalence of autism, coupled with misinformation by Andrew Wakefield about a purported link between the MMR vaccine and autism, compounded by continuous efforts by vaccine opponents, contributed to a steep drop in vaccination rates in the Somali community, from more than 90 per cent in 2005 to nearly 40 per cent in 2017,” said Doug Schultz, a spokesperson for the Minnesota Department of Health.

“We know that Wakefield had interactions with the community on at least two occasions.”

He added: “We were aware of Somali community concerns about the MMR vaccine and autism as early as 2008, and had been increasing efforts to engage with the community to address those concerns and improve vaccination rates for several years prior to the outbreak. We are continuing to amplify previous activities by improving and strengthening our relationships with the community and seeking the community’s counsel on ways we can improve the health of everyone.”