COMMENTARY POINT OF VIEW Measles, autism and vaccination in the Minnesota Somali community Public health education campaigns must recognize and respect cultural experiences if they are to be successful BY FAIZA AZIZ AND STEVEN H. MILES, MD n March 2011, Minnesota experienced a been largely eliminated in the United large refugee camps in Kenya and Ethio- measles outbreak that arose within, and States, except for occasional imported pia. Poor sanitation, overcrowding, mal- Iwas largely confined to, the Somali com- cases from developing regions still experi- nutrition and violence present challenges munity. Twenty-one cases in Hennepin encing outbreaks. to United Nations vaccination programs in County were linked to a U.S.-born child In Somalia, measles is prevalent and the camps. of Somali descent who had developed leads to high mortality for children Somalis who are accepted for immigra- symptoms after travel to Kenya. Sixteen of younger than 5 years (200 per 1,000 live tion to the United States go through a the 21 individuals had not been fully vac- births). In Somalia and in regional refugee medical examination and receive manda- cinated. Of those, nine were old enough to camps, overcrowding, high rates of lung tory immunizations. Refugees are medi- have received MMR vaccination. Six of the seven infected Somali children were too young to have received vaccinations. Public health officials and news media How can you help someone focused on how the Somali community “ was receptive to Andrew Wakefield’s spuri- you cannot communicate with? ous claim that the measles, mumps and It was hell what I went through with my son. I had to drive him rubella (MMR) vaccine increased the risk around in my car almost every night when he was little because he of autism, but did not explain why many in the Somali community were susceptible to would not sleep or calm down…Your life stops when you have an these claims. autistic child…You cannot leave them alone, because they might Somalis’ unique experience with illness, harm themselves. Thank God he is able to care somewhat for himself health care and disease prevention as they now, but he still cannot talk after years of therapy. left their homeland, sojourned through refugee camps and came to Minnesota “I have had measles before, and it was not as bad as autism. You shaped the response to the false claim that are sick for a couple of days, then you get better. Autism damages vaccines cause autism. Many in the Somali for life…it is irreversible.” community were receptive to false argu- – Minnesota Somali father of an autistic child ments and avoided vaccinations because of: • Vaccination experiences in Somalia and disease, malnutrition and limited medical cally examined and vaccination status is during immigration. care increase the risk of transmission of confirmed on arrival in the United States. • Cultural beliefs and expectations affect- measles and of ensuing outbreaks. Despite ing Somalis’ use of medical care. extreme logistical problems, for many Changing perceptions about • Somalis’ perception of autism. years, Somalis had welcomed vaccina- vaccinations • The media’s influence on the communi- tion in Somalia, where more than half the Although Somalia is desperately poor and ty’s response to a perceived health crisis. children are vaccinated. In 1991, the fall disrupted, rising immunization rates and of the Somali government and the ensuing falling measles rates show broad interest Measles and vaccinations collapse of the public health infrastructure in vaccination to prevent acute disease. Measles is a highly contagious, vaccine- damaged national disease surveillance and In Somalia, clinical care is scarce and is preventable disease. It is a leading cause vaccination programs. Since then, clan used for treatment of infections, traumas of death and disability in young children rivalries have prevented the formation of or disabilities, rather than for prevention. around the world. By 2000, measles had national institutions. Many Somalis fled to Outreach programs through donor orga- 30 | MINNESOTA MEDICINE | JANUARY/FEBRUARY 2018 POINT OF VIEW COMMENTARY nizations provide supplementary vaccina- tions. In Somalia, measles is common and FIGURE 1 vaccinations are valued because clinics for Minnesota Measles Cases, January-August 2017 treating illness are scarce and costly. When they arrive in the United States, Somalis find clinics to be readily avail- able and measles to be rare, and they have high expectations of the efficacy of disease treatment, so they tend to place less value on preventive health care. As Somalis in the United States do their risk-benefit analysis, the idea that a chronic complication such as autism might arise from the vaccine can lead them to be highly vaccine-averse. Reported Measles cases in Minnesota from January-August 2017 as the outbreak was winding down Perceptions of autism (Source: Minnesota Department of Health) Autism spectrum disorders (ASD) are global neuro-developmental disorders affecting all races and socio-economic Autism, vaccine hesitancy and the cation tends to be oral and many Somalis, groups. ASDs are characterized by a wide 2011 measles outbreak especially mothers, are not fluent in Eng- range of symptoms, including cognitive Three years before the 2011 measles out- lish. Rumors about the fallacious associa- and functional disabilities. According to break, a Minnesota Somali parent saw tion between measles vaccination and an the Centers for Disease Control (CDC), media reports that an unusually high increased risk of autism rapidly spread. As the increasing number of cases of ASD in number of Somali school children were Somalis heard that the MMR vaccine in- the United States may be because more are being referred to autism-assessment pro- creased the risk of autism, immunization identified through school-based screening grams. She raised alarms in the Somali rates for Somalis dropped rapidly. And in and special education programs. It was the community. In 2009, in response to So- 2011, there was a first measles outbreak. results of school-based screening for pos- mali concerns, the Minnesota Department Few Minnesota Somalis knew of autism sible learning disabilities that ignited fears of Health (MDH) collaborated with Min- before the 2011 launch of the Minneapolis of excess autism in the Somali community. neapolis Public schools (MPS) to measure Somali Autism Spectrum Disorder Preva- Autism is known in East Africa; there are the proportion of Somali preschoolers lence Project (MSASDPP), which was autism treatment centers in Ethiopia and receiving ASD services and found it to be funded by the CDC, the National Insti- Kenya. However, many African clinics are elevated, consistent with the community tutes of Health (NIH) and Autism Speaks. not capable of diagnosing ASDs. Some perception. Vaccine opponents quickly It was designed to assess whether Somali West Africans who care for children at- spread information from a 1998 paper by children in Minneapolis, 7 to 9 years of tribute ASD symptoms to supernatural Andrew Wakefield that posited a causal age, had a higher prevalence of autism causes such as angered ancestral spirits, link between ASD and the MMR vaccine. than non-Somali children. Its 2013 report sinful wrongdoing (most often by the In 2010, The Lancet, the journal that had noted that Somali and Caucasian children mother) or by action of the devil. In gen- published Wakefield’s paper, retracted it had the same incidence of ASD but that eral, the stigma of mental health disorders and Wakefield’s medical license was re- Somali children suffered more severe cog- is a barrier to seeking care. Symptomatic voked, but vaccine opponents kept Wake- nitive defects, possibly because of other children often are taken to traditional field’s debunked view and celebrity alive. experiential or environmental factors. healers before they are seen in medical By March 2011, vaccination opponents It is an oversimplification to conclude clinics. had organized at least three meetings be- that Somali parents who rejected measles The lack of recognition and identifica- tween Andrew Wakefield and Somali par- vaccination for their children are anti- tion of ASD in Somalia, contrasted with ents in a Minneapolis Somali restaurant. vaxxers, anti-science or homeopaths. A cases identified through routine school- Media coverage engendered by his celeb- 2014 study examined challenges facing based screening in the United States, at rity and the idea of covering “all sides of the Somali, Hmong and Latino communi- least partially set the stage for Somalis in the issue” fueled the myth that there was a ties. It found that Somali parents were not the United States believing that ASD was a scientific controversy. anti-Western medicine or passive about new health risk for them, incurred during The Somali community is built on ex- seeking care. Indeed, they actively sought immigration. tended kinship relationships. Communi- out services and alternatives for their JANUARY/FEBRUARY 2018 | MINNESOTA MEDICINE | 31 COMMENTARY POINT OF VIEW children from schools, ASD centers and ners who attended were well prepared with Going forward expert medical advisers and advocated for facts. But the public forum was conducted Health risks in children engender high insurance coverage to provide family, edu- in English without bilateral simultaneous emotions. Anxious parents will interpret cational and supportive care service. translation (speaker to audience and audi- information in light of science, experience, ence questioner to speaker), as is standard anecdotes, love and fear. Some criticized The 2017 Measles Outbreak practice for cross-cultural health presenta- parents who did not vaccinate their chil- In 2017, Minnesota’s Somali community tions in refugee camps. The lack of simul- dren because of unwarranted fears. They experienced another outbreak of measles. taneous translation deterred attendance even argued that such parents were negli- Sixty-four of the 79 Somali cases lived in and participation by less enculturated gent, unconcerned about their child’s in- Hennepin County.