Measles and Autism in Minnesota: False Prophets and Real Problems

Measles is in the news again.

As of this writing, 51 children and 3 adults in Minnesota have come down with measles in the past month, of which 3 had been vaccinated. So far, the scale of this outbreak falls within familiar patterns of recent years, including the much-hyped 2015 Disneyland outbreak – the U.S. has averaged about 125 cases per year over the past two decades. However this cluster is unique in that it began in the tightknit Somali-American community of Cedar-Riverside in Minneapolis.  Forty-seven of the 54 reported cases – 87% – are Somali-American.

Somali-Minnesotans share another distinction: the unusually high autism prevalence in their community. One in 32 children (3% of the population) is 1.5 times the statewide prevalence of 1 in 48, and more than double the national rate of 1 in 68.  Even more troubling, autistic Somali-Americans have 3 to 5 times greater risk for intellectual disabilities than their Minnesotan peers in other groups.  Public health officials have downplayed the significance of these findings, pointing to the statistically comparable rate of 1 in 36 among white Minnesotans. However, a similar 2010 Swedish study reinforced the distinction, reflecting autism prevalence 3 to 4 times higher among Somalis in Stockholm than that of other ethnic groups.

This striking autism prevalence among Somali-Americans mirrors the steep rise in prevalence across the U.S. and other industrialized nations, but defies the common explanation of “better diagnosis.” Somali-American parents have witnessed a first-generation shift from a culture in which there is no known autism, for which there is no word for autism in the spoken language, to a reality in which no family is untouched by this epidemic. As Somali-American parents have observed staggering rates of regressions and neurological impairments among their kids, vaccination uptake in their community has declined in recent years. Community leaders reached out to advocacy organizations for support in exercising their parental right to choose individualized vaccination plans appropriate for their children’s medical histories. This action has sparked unprecedented backlash from public health officials and media outlets.

Vaccine safety advocates recall the panicked and impugning tone of the 2015 Disney measles coverage, and this year’s reporting is tediously familiar. But coverage of the 2017 outbreak in Hennepin county has acquired new elements of condescension and paternalism: Lena Sun of the Washington Post declares “Anti-vaccine activists sparked the state’s worst measles outbreak in decades,” opening with the foreboding specter of a young mother “getting advice from friends,” who have apparently been fomenting “a discredited theory…fanned by meetings organized by anti-vaccine groups.” Sun proceeds to invoke the pharmaceutical industry’s most convenient and reviled villain, Dr. Andrew Wakefield, and misquotes him out of context. Other outlets followed suit, some with comedic hyperbole.

In fact, the work detailed in the 1998 Lancet paper co-authored by Wakefield and 12 others was fully exonerated during co-author Dr. John Walker-Smith’s trial in 2012, in a scathing decision which declared “the finding of serious professional misconduct and the sanction of erasure are both quashed.” The results of that paper have been replicated numerous times, and the causal association between thimerosal and aluminum adjuvants and the brain injuries which cause symptoms of autism are well established. Large court settlements have been awarded to victims of vaccine-induced brain injuries resulting in autism.

The frenzy reached a crescendo this past Monday when the Boston Herald called for the revival of public execution by hanging. It’s one thing, the Herald admonished, when elites in Hollywood don their “fashionable” anti-vaxism atop designer gowns at the Oscars – but “it’s another thing when anti-vaccine activists start preying on vulnerable people, particularly within immigrant communities.” Presumably “immigrant communities” are less capable than other parents of making sound evidence-based decisions, so the vile anti-vaccine interlopers must be dispatched via the hanging rope.

The Somali-American community of Cedar-Riverside sought out Dr. Wakefield to address the consistent pattern of their children’s regressions following the MMR vaccine, after their concerns had been categorically denied and ignored by public health institutions and care providers. The parents pursued comprehensive information to properly weigh the risks and benefits of wild measles infection against risks and benefits of strict compliance with the CDC vaccination schedule.

First-generation Muslim-Americans of color expose themselves to compounded bigotry and mistrust when they insist upon appropriately individualized care for their special-needs children, as evidenced by distorted representations in the press. So why would they take this risk? Perhaps they perceive a more ominous threat than pervasive prejudice or outright bullying. Somali-Minnesotan parents overwhelmingly, disproportionately belong to the larger community of autism parents, whose autistic children are 40 times more likely to die accidental deaths, with their deaths occurring at the mean age of 36 years – half that of their neurotypical peers. Somali-Minnesotan parents are no less likely than any other parents to base their medical decisions on the entire body of available scientific evidence, which reveals that concerns over vaccine safety are warranted, if not acknowledged by public health officials.

Various forms of this collective denial have evolved over time. As exponential growth rates in autism prevalence have negated the “better diagnosis” trope and its associated group exercises in retroactive lay-diagnoses, a new “better than an infectious disease” trend has emerged. Minnesota State Rep. Mike Freiberg instructs Star Tribune readers that there are “worse things than autism and better things than measles,” in describing his son’s recent autism diagnosis. “With proper treatment, we anticipate that he will be a thriving member of the community,” he writes. While that’s certainly true for the majority of high-functioning autistic people, the message sounds somewhat oblivious to the needs of constituents nine miles east of his in Cedar-Riverside, whose autistic population is five times more likely to be intellectually disabled. Will these children have ample access to “proper treatment?” The Minnesota State Health Commissioner has requested $5 million in emergency funding to manage the implications of 54 measles cases. If the state has $5 million in reserve for such predicaments, could any of these funds be routed to address the needs of Somali-Minnesotan autistic children? What rate of prevalence constitutes the tipping point at which the state of Minnesota will acknowledge autism as a crisis of public health?

And what of the measles crisis in Minnesota? The current cluster of 54 cases has thus far sparked a 0.001% statewide incidence rate this year, with a more impressive 0.004% rate of incidence in Hennepin County. However the hospitalization rate among this handful of patients is high, fluctuating between 25-33%. The CDC estimates that during the modern pre-vaccine era, the hospitalization rate of measles patients was around 1-2%, with 85% of cases being so mild as to go unreported. The average annual risk of death from measles complications between 1950 and 1963 was 0.0003%, or about 0.26 per 100,000. (The average annual risk of death by lightning during that period was 0.0001%, or 0.10 per 100,000.) There have been pockets of measles cases every year in the United States since the vaccine was licensed in 1963, including 6 reported deaths in the U.S. over the past decade, and one 2015 case in which an immunocompromised patient’s pneumonia was posthumously reclassified as a measles complication resulting from presumed exposure months prior to her death.

Such cases are confounding, as the MMR is a live-virus vaccine which can cause fever, rash, and viral shedding mimicking wild measles infection. One reported case in Stearns County, MN was later removed from the official 2017 count, described as “a borderline case” with “weak positive laboratory results.” Daily statistical updates on the MDH website reflect that this was a patient who had received one dose of MMR. These case histories fall within a gray area in which it is unclear how many measles infections among vaccinated patients are classified as reactions and how many go completely unreported.

What about the remote yet real possibility of serious measles complications? Dr. Michael Osterholm, Regents Professor and Director of the Center for Infectious Disease Research and Policy at the University of Minnesota, recently reflected on the 1990 international measles outbreak. Of 27,786 nationwide cases, 460 occurred in Minnesota which resulted in 3 deaths. “Three children died in that outbreak; I can remember each one of them and their family’s grief as if it were yesterday. Those tragic deaths didn’t have to happen,” he writes. “We had a highly effective and safe measles vaccine that could have saved those three lives had the children been vaccinated. But at that time officials didn’t have the means to identify children who lacked access to regular medical care.”

Surely those deaths were tragic, but Dr. Osterholm’s important history lesson distorts a few key details of those cases. Kate Awsomb, Deputy Director of Communications at the MDH, confirmed that the infants who died in 1990 were too young to be vaccinated: “At 10 months, 13 months and 14 months, they were younger than the 15 months recommended in the routine vaccination schedule; however, MDH had recommended that because of the outbreak, children in the area affected get vaccinated as early as 6 months.” The parents of those babies likely did access regular medical care and were fully compliant with standard recommendations, but the recommendation was changed while the outbreak was already in full force. Even if by some chance the infants had been reached during stepped-up vaccination efforts before they were exposed, the MMR package insert explains clearly that the “safety and effectiveness of the mumps and rubella vaccine in infants less than 12 months of age have not been established. The younger the infant, the lower the likelihood of seroconversion.”

Another unspoken tragedy of these deaths is that the infants represent a broad gap in the perceived protection of an artificial “herd.” They could not be safely or effectively protected by vaccination, and they were denied the opportunity to receive transplacental maternal antibody protection from mothers with naturally acquired lifelong measles immunity, as they would have been just a few decades earlier when everyone got the measles and 99.985% of people lived to tell the tale.

Certainly the fact that a death was unlikely to occur makes it no less tragic when it happens, whether by lightning strike, complications from an otherwise mild infectious illness, or adverse reaction to a drug or vaccine. There have been no measles deaths in Minnesota over the past several decades; however a one-year-old infant died the night after he received the MMR vaccine in 2011. VAERS is a passive reporting system which FDA Commissioner David Kessler estimated captures about 1-10% of adverse reactions and deaths. We can’t know for sure whether an additional 10 or 100 deaths were caused in Minnesota by the MMR in 2011, because no program exists to comprehensively acquire such data. What we do know is that if Kessler’s estimates are correct, the MMR-related reports in VAERS represent a real number of MMR-related deaths which could easily exceed pre-vaccine-era measles mortality.

Vaccine safety advocates seek to document and compare the real risks of infectious diseases with the real risks incurred by their means of prevention. Pointing out abysmal institutional failures to do so with scientific integrity does not imply indifference to children’s deaths. On the contrary, it demonstrates great care and investment in every child’s life and the quality of their future. Safety advocates will persist in their efforts to raise awareness of vaccine risks, effective approaches to disease management and prevention, and the exercise of medical informed consent. We are not going away.