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Fear and frustration dominated Somali community forum on measles, vaccines and autism

Health officials, physicians and leaders of the Somali community led a forum on the safety of the measles vaccine at the Brian Coyle Center on Saturday.
MinnPost photo by Susan Perry
Health officials, physicians and leaders of the Somali community led a forum on the safety of the measles vaccine at the Brian Coyle Center on Saturday.

Fear and frustration seemed to be the prevailing emotions at Saturday’s Somali community forum on Minnesota’s current measles outbreak.

The fear came from parents in the audience — some Somali, some not — who believe that the measles, mumps and rubella (MMR) vaccine causes autism. In the Somali community, this fear has escalated during the last two years, after a Minnesota Health Department study found that Somali children were disproportionately represented in Minneapolis school system’s autism programs.

The frustration at Saturday's forum came from public health officials and physicians who know the scientific evidence shows no link between MMR and autism and who are worried that if parents continue to refuse to have their children vaccinated, the measles outbreak will grow — and we’ll have more outbreaks in the future.

As Dr. Osman Harare, a Twin Cities pediatrician and one of two Somali doctors who spoke at Saturday’s forum, pointed out (through a Somali-to-English translator), “There are no facts to prove MMR causes autism. … We have to make sure that all our children are vaccinated against the measles.”

Not innocuous
As of Saturday, some 11 cases of measles had been confirmed in Hennepin County since February. The Minnesota Department of Health believes that all but one of those cases are connected to an unvaccinated boy who became infected with the measles while traveling in Africa. (The one unconnected case was in a 35-year-old man, who appears to have become infected in another state.)

Dr. Osman Harare
Dr. Osman Harare

Five Six children involved in the current epidemic have been hospitalized due to complications from the measles. All are recovering.

“Measles is not just an illness where you get a rash, a fever and a running nose,” Dr. Sheldon Berkowitz, a pediatrician at Children’s Hospital in Minneapolis, told parents at Saturday’s forum, which was attended by about 60 people. One in 20 children with measles develop pneumonia, he said, and 1 in 1,000 develop encephalitis, which can lead to permanent brain injury.

And one in every 500 to 600 children with measles dies from such complications, he added.

Dr. Abdirahman Mohamed, a family practitioner at the Axis Medical Center in Minneapolis, underlined that point. He spoke of six young unvaccinated Somali-American children, including two from Minnesota, who have died since 2008 after contracting the measles while visiting family in Africa.

“It’s a good thing [for children] to go back to their homeland,” he told the forum's audience, “… but they have to be safe.”

A mother changes her mind
Perhaps the most effective speaker at the forum was Hodan Hassan, a young mother who spoke passionately about how she had once believed that the MMR vaccine had caused her daughter, now 6, to develop autism. Hassan said she had been influenced by the work of Andrew Wakefield, the British doctor whose since-discredited 1998 paper was instrumental in suggesting a link between autism and the MMR vaccine — and in launching the now worldwide anti-vaccine movement.

Dr. Abdirahman Mohamed
Dr. Abdirahman Mohamed

Hassan went to hear Wakefield speak at a Somali community meeting when he was in Minneapolis last December. (Wakefield was stripped last year of his British medical license and appears to now live in the United States.) Her child’s physician, however, suggested that Hassan do her own research before coming to any conclusions. She did — and found, she said, “that there is no connection” between autism and MMR.

“If you need someone to give you details, see Somali doctors, rather than someone who has no license,” she told the other parents at Saturday’s forum.

After the event, Hassan told me that she believes that continuing to argue over whether or not MMR causes autism is a waste of time and resources. “That research has been done, and it’s foolproof,” she said. “It’s time to look at something else.”

Some remain unconvinced
Based on my conversations with several other Somali parents after the forum, which was held at the Brian Coyle Center in Minneapolis, many parents are reluctant to look elsewhere for causes of autism — or, at least, they’re reluctant to let go of the idea that vaccines are involved.

One Somali parent of a child with autism, Sophie Ali, told me that she hadn’t heard anything at the forum that would change her mind about the connection between the MMR vaccine and autism.

“Who do you believe?” she said.

And that seems to be the issue. Right now Ali and other parents continue to believe Wakefield and his ardent anti-vaccine supporters — supporters like Patti Carroll of Shoreview, who during the forum’s question-and-answer period charged Berkowitz and Mohamed with making “untrue” statements about MMR and autism.

Carroll was also an organizer of an event last Wednesday night that brought Wakefield yet again to Minneapolis to talk with Somali parents (reportedly, his third such visit since December). Members of the media, including me, were turned away from the event, as were public-health officials.

At that event, while she was screening people who wanted to enter, Carroll, who has a teenager with autism, told me that she wasn’t concerned about the current measles epidemic.

“At this time it doesn’t ravage the population like it did before,” she said.

Most of the Somali parents she has talked with, she added, are “thrilled” to have their children get the measles rather “than deal with the effects of the vaccine.”

Needless to say, that kind of attitude angers as well as frustrates health officials. Anyone who has studied the history of measles knows that it used to kill hundreds of children each year in the United States and left hundreds more with permanent brain injuries. Worldwide, measles still claims the lives of 200,000 people annually.

Still, some health officials see signs that attitudes toward childhood vaccines may be changing, at least in the Somali community — and the current measles epidemic may be serving as the catalyst. Mohamed told me of a Somali mother who recently said to him, “Autism is not going to kill my child, but measles will,” and consented for the first time to having her child vaccinated.

“We need a concerted effort to counter the misinformation,” Mohamed said.

If Saturday’s event is an indication, however, it’s going to take some time.

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Comments (18)

WE often hear that mercury is bad for you, except, of course for mercury in dental fillings and vaccines. The claim is probably true but why use a dangerous substance.

The last time I went to the dentist I asked how they are coping with 1400 per ounce gold prices. I was told you can still get gold if you want to pay but not it is epoxy composites and porcelain. I first suggested these gold replacements several decades back but high gold prices forced their adaption.

That said, mercury (and lead) should be removed from direct human usage. We can do without lead based ink on food packaging. Are their non mercury options for vaccines?

With the refugee immigrant autism it might be wise to "follow the money". If your child is diagnosed as autistic there is a potential for a substantial increase in total social service (welfare) benefits if the kid becomes eligible for Social Security disability benefits.

This does not mean that you coach the kid but
the diagnosis of autism is subjective so if sought for a "quiet" kid there is chance you will find.

My favorite Aldi stores are on Franklin Av. and Hi-Lake in Minneapolis. These have a lot of refugee immigrant, mostly Somali customers. Nice people, never trouble with them but I noticed that they buy huge quantities of bottled water.

The irony is that Minneapolis probably has the safest drinking water in the world. Minneapolis did the entire Homeland Security water system upgrade, our water is primo! (I buy maybe one 12 pack of bottled water per year basically to keep in my car in warm weather).

If our social service agencies can't convey the concept of "clean water" to refugee immigrants, we have problems!

For a bit of irony I recall a TV news piece a year or so ago where ST. Paul Mayor Rybak did an appearance on support for University Av. during light rail construction. It was in an immigrant business that offered "filtered clean water" at forty cents per gallon.

Hmm! Maybe I should get a 24 pack of water this year in case I have to venture east of the Mississippi!

Mercury was removed from most vaccines about 10 years ago. This was done not so much because of health concerns, but as an attempt to stop the decline in vaccination rates caused by the false claims of an vaccine-autism link. As expected, the removal of the mercury has had no effect whatsoever on autism rates. Sadly, it also had little effect on those who continue to claim that there is a link between vaccines and autism.

Several of those who have become ill in the current outbreak are infants--too young to be vaccinated, and vulnerable to infection from unvaccinated older children and adults. A good example of why it is so important for all kids to be vaccinated.

Vaccine opponent Patti Carroll says, “At this time it doesn’t ravage the population like it did before.” But of course the reason we don't have widespread infections is because of vaccinations. Mercury-free vaccines are generally available upon request.

//Pretty ridiculous notion that immmigrant parents are deceptively claiming their children have autism--that's prejudicial speculation with no basis in fact. I hope our Somali neighbors know that most of us don't share such views.

Eleven cases of measles, and MDH roars into action.
15,000 cases of autism, and MDH hides in the office.

Here are some unpopular facts:
- Vaccinated and unvaccinated people are transmitting measles.
- The CDC does not respond to vaccine injury reports, or help victims.
- MMR-induced autism has been quietly conceded
by the NVICP.
- The public wants their monovalent measles vaccine back.

So... who deserves to feel frustrated?
Vaccine consumers and autism families.

By the way, true anti-vaccine supporters do NOT support Dr. Andrew Wakefield -- because he supports continued vaccine use. It's hard to believe that reporters continue to perpetuate the pejorative "anti-vaccine" falsehood onto anyone who dares speak out with concerns about vaccine safety. Using that illogic, Ralph Nader is "anti-car" and Meryl Streep is "anti-apple."

Doctors would serve patients better if they'd stop looking at CDC PR and start scoping gastrointestinal tracts. Currently parents have to drive or fly out of state to get decent GI care for their children on the autism spectrum.

"Here are some unpopular facts:
- Vaccinated and unvaccinated people are transmitting measles.
- The CDC does not respond to vaccine injury reports, or help victims.
- MMR-induced autism has been quietly conceded
by the NVICP.
- The public wants their monovalent measles vaccine back."

Please cite your sources.

Who are parents believing? It's not that these parents are being swayed by Dr. Wakefield on the one hand, or by the MN Department of Health on the other hand. They are evaluating their own experience where their child or their friend's child had a seizure immediately following the MMR vaccine and have had neurological problems ever since. These parents are wisely being cautious about protecting their children from any more vaccinations until more research is done. We need to give these parents a lot of respect as they wrestle with the risks and benefits of vaccinating and not vaccinating. And we need to listen to their stories and take them seriously to prevent more people from being harmed.

Nancy, when someone abuses children and fakes research to make false claims about vaccines, I think its fair to label them as anti-vaccine. What a low-life con man like Andrew Wakefield claims to actually believe is pretty irrelevant.

Hodan Hassan is absolutely right. To continue to debate about the safety of vaccines is not only a waste of time; it does a huge disservice to the enormous population of people dealing with autism. At some point in the future, this debate is going to be looked upon the way the debate about whether the earth was round or flat is looked upon now--except that in this case, children are becoming seriously ill and dying. In the meantime, people like Patti Carroll need to be stopped. Her nonsensical statements betray her inability to grasp even the most basic epidemiological principles. She has leeched upon a vulnerable population to further her misinformation campaign. Incidentally, the people who debate about mercury in vaccines (thimeresol is only in the multi-vial dose version of the flu vaccine--no childhood vaccines contain it anymore), seem not to understand the difference between ethyl mercury and methyl mercury...

//Here are some unpopular facts:
- Vaccinated and unvaccinated people are transmitting measles.
- The CDC does not respond to vaccine injury reports, or help victims.
- MMR-induced autism has been quietly conceded
by the NVICP.
- The public wants their monovalent measles vaccine back.

Popularity one way or another doesn't determine a fact's accuracy.

Some older vaccinated people may get mildly ill and transmit the measles because they didn't get a booster shot. This doesn't mean the vaccine doesn't work or that it doesn't make any difference.

No, the CDC doesn't deal with vaccine issues, that would be the FDA. It's misleading to suggest that no investigation has taken place, several studies have been done. The failure to replicate Wakefield's results lead to revelation that he'd committed scientific fraud.

The fact that the National Vaccine Injury Compensation Program (NVICP) provided compensation for MMR and autism doesn't establish a link. There was a political and legal decision to ere on the side of caution for a period of time. Here's another fact, the number of some such compensated claims dropped from a high of 2,400 in 2003 to just 18 in 2010.

I don't know how one make a claim about public demand for an alternative vaccine when 90% of parents are using the existing vaccine.

Here's the thing, I used to work with Autistic kids back in the 80s, it was a much much narrower definition at the time, and didn't even exist in the DSM at the time. Autism was characterized by a severe disruption of self and the ability to differentiate between self, and not-self. Consequently autistic kids had severe developmental and learning issues. It was very difficult to connect and teach autistic kids because they recognize and prioritize social contact and or even animate and inanimate objects. Basically you couldn't get their attention. Self destructive behavior was also a huge problem, a lot of the training involved techniques to restrain a child that was banging a head or something without getting into a fight with them.

By the mid 90s for a variety of reasons the diagnostic criteria had expanded and continues to expand enormously. The vast majority of kids getting diagnosed now would never have qualified back in the early 80s. There was simply no such thing as high functioning autism. These kids existed before, they just didn't the autism diagnosis. Now whether or not the expanded criteria was a good idea or not, or why it happened, is a subject for another day, but one thing is clear- the expanded criteria led a huge increase in the diagnosis. This increase made it look like an epidemic was taken place, and that demanded and explanation. Part of the problem with the MMR and other explanations for the epidemic of autism is that they trying to explain a non-existing epidemic. I'm not saying autism isn't real, I'm simply pointing out that it was expanded criteria, not an actual increase in incidence that produced that spike of autism.

Oops! I wrote that the St. Paul mayor was Rybak. Thankfully, Minneapolis has not annexed St. Paul where the mayor is still Chris Coleman. I usually watch the KSTP news so if anyone is looking for Mayor Coleman is the four cent per gallon water store it probably there.

Another "oops", meant to says autistic kids "don't" recognize and prioritize...

"We need to give these parents a lot of respect as they wrestle with the risks and benefits of vaccinating and not vaccinating. And we need to listen to their stories and take them seriously to prevent more people from being harmed."

The problem is that these parents aren't weighing the risks and benefits. They are making medical decisions without evidence and based the lies of frauds like Wakefield. If these people were really weighting risks and benefits, you wouldn't see this in the original story:

"Members of the media, including me, were turned away from the event, as were public-health officials."

Public health officials are kept away so they can listen to a doctor who had his license taken away for fraud and abusing children. And you think these parents should be taken seriously? That they deserve respect? What they deserve is sympathy, not only because of the difficulties in raising autistic kids, but because they have been further victimized by people like Wakefield.

I agree it's hard to respect parents that make bad decisions, but I don't think disrespect is appropriate or constructive. A lot of Americans have been having a very difficult time sorting out reliable and unreliable information and making good choices with a variety of issues. There are a lot of reasons for various types of illiteracy, it's hard to pluck an individual out of this environment of confusion and misinformation and say they should have known better. Unfortunately we live in a world where a lie travels the world in milliseconds and the truth often times never catches up.

Paul, in an ideal situation the best approach would be to explain - using facts and logic - why these people are wrong. The problem is that doesn't work because they don't care about facts. No amount of evidence or lack of evidence is going to change their minds. They follow a doctor whose positions weren't just wrong, but completely fabricated, and who has been stripped of his medical license as a result. When he speaks to them, the media and other public health officials are kept away. This is basically a cult. Its desperate people being manipulated by a con artist.

As far as respect and disrespect, do the "birthers" deserve respect for their arguments? Should "intelligent design" be respected by biologists? Taking the argument to the extreme, should holocaust deniers be respected? 9-11 "truthers"? When arguments are not based on facts and logic, and are instead based on lies, I think its important to call that out and not to give any respect to those making those arguments. In the case of parents of autistic children (unlike my other examples) sympathy is certainly appropriate because, again, these are desperate people being victimized. But it is a huge mistake to give out any respect or to suggest that there is anything meaningful to debate. Doing so jut empowers the lies they tell.

"But it is a huge mistake to give out any respect or to suggest that there is anything meaningful to debate. Doing so jut empowers the lies they tell."

On the contrary. Disrespecting people with perspectives contrary to your own empowers and perpetuates their opinions. It reinforces the notion that people who oppose their side of the issue are irate, irrational, and disregarding those perspectives.

Mutual respect is a necessary factor for two sides to come to an agreement on any perspective. Without it sides will just attack one another and fail to make an effort to understand the perspective which opposes their view.

Disregarding the possibility that you might have something to learn from these people is just plain ignorant. We all have a lot to learn.

Aaron, did you even read my comment?

These people do not deserve respect not because they have "perspectives contrary to [my] own" but because their perspectives are based on falsehoods. When people are unwilling to take facts and logic into account in making their arguments, they don't have merit in my book.

Do racists deserve "mutal respect" with regard to their views? Do anti-semites? Does everyone, no matter how ignorant or offensive their views, have a valid perspective? Sorry, but its not ignorant to recognize that some people don't have anything to offer.

I respect beliefs that are based on facts and reason. Even if I disagree, I will respect your belief if there is a basis for it. But when your beliefs are based on lies and ignorance like those of the anti-vaxers, those views don't deserve respect. If you believe that facts and reason are not important, that all views are valid no matter what, that is true ignorance.

I have heard that the Somali autism epidemic might be due to vaccines, but in another setting. Somalis are required to take a multi-series of vaccines in order to enter this country. So women who are pregnant or of child-bearing age receive a heavy dose of vaccines.

If it is true that autism is associated with mercury, and if many, or at least some, of these vaccines contain mercury, then women could potentially have high levels of mercury in their bodies. This mercury could then be transferred to a baby in utero, or perhaps through breast milk. When such infants/young children are then exposed to additional mercury--perhaps through vaccination, perhaps through diet containing a large amount of fish, or perhaps through other sources--autistic symptoms could result.

In fact, it appears that some children don't experience autism symptoms until after the MRR vaccine.

We are not looking at this issue wholistically. The fact is that autism appears to be on the rise in this country. This is a very difficult situation for both families and schools.

It also appears to me that the government and vaccine manufacturers use fear-based tactics when promoting vaccines.

Babies now receive a hepatitis vaccine upon birth. If there are any long term effects from this, we won't find out for years down the line.

I don't believe we really know the answer to the question: do the increasing number and frequency of vaccines lead to an increasing number of cases of autism? If not, what is causing the increase in autism?

The Sunday Star-tribune premium starts a two part series on autism treatment.
http://www.startribune.com/local/119069124.html
Advocates say intensive therapy for autism helps kids recover, but skeptics ask whether it's really cost-effective. Part one of a two-part series.