Child pays price for anti-vaccine misinformation

This article is by Dorit Rubinstein Reiss, Professor of Law at the University of California Hastings College of the Law (San Francisco, CA). She is a frequent contributor to this and many other blogs, providing in-depth, and intellectually-stimulating, articles about vaccines (generally, but sometimes moving to other areas of medicine), social policy and the law. Her articles unwind the complexities of legal issues with vaccinations and legal policies, such as mandatory vaccination and exemptions.

Professor Reiss writes extensively in law journals about the social and legal policies of vaccination. Additionally, Reiss is also member of the Parent Advisory Board of Voices for Vaccines, a parent-led organization that supports and advocates for on-time vaccination and the reduction of vaccine-preventable disease.

On March 7, 2015 a four year old Italian girl dubbed “Clara” by the media (real name hidden to protect her privacy) died from subacute sclerosing panencephalitis (SSPE), a complication of measles, after prolonged suffering (the girl was in the hospital in which she died for over 4 months, and has been sick at least since last October, and hospitalized elsewhere).

Paying the price of anti-vaccine misinformation

Her parents accused her doctors of causing her death by failing to properly diagnose her illness early enough and provide proper treatment. The parents of the child are both doctors, the father the grandson of the physiatrist Vincenzo Saraceni, Professor of Medicine at the University La Sapienza of Rome. They said the child would still be alive if she received proper pharmacological treatment. Their personal lawyer filed a complaint with the public prosecutor. But the doctors, in response, pointed out that the child contracted measles because her parents failed to  vaccinate her – and then went on to develop SSPE, a generally fatal complication of measles. SSPE has become more common as measles rates increase.

The public prosecutor, Mr. Attilio Pisani, has ordered an autopsy and the acquisition of the medical records from the two hospitals where she was treated (see here, here and here).

 
 

So, what do we have here?

 

  1. At this point, no charges for manslaughter were filed against anyone. What we have is the start of an inquiry into the girl’s death, following a complaint by her parents. We do not know who, if anyone, will be charged with anything in connection to this.
  2. A four-year-old daughter of wealthy, well-educated parents – no doubt a well nourished child – was left unvaccinated against measles, a preventable disease. Vaccination rates against it in Italy are around 90%  for one dose of MMR and less than 85% for the second dose. As a result, cases are high in Italy: 3,943 reported cases in 2013 and 1,680 in 2014. MMR protects 95% of those that get one dose and 99% of those that get two doses (pdf). See the CDC information on MMR vaccine effectiveness. Those left unvaccinated – like little Clara was – are substantially more at risk of getting the disease. Clara did.
  3. Little Clara got a generally fatal, horrible complication of the disease described by anti-vaccine activists as benign, mild or “a common childhood illness”.

A pediatrician who regularly denies that he is anti-vaccine, though his claims suggest otherwise, Dr. Bob Sears, responded to the claim that measles is deadly by saying: “Not in the U.S., or any other developed country with a well-nourished population. The risk of fatality here isn’t zero, but it’s as close to zero as you can get without actually being zero. It’s 1 in many thousands.” He described encephalitis as “ extremely rare in well-nourished people.

The downplaying of the disease’s risks is part of the case built against vaccination by anti-vaccine activists, doctors and organizations. The other part is overstating the risks of MMR and attributing to it risks it does not have, like autism. As a result, parents don’t use the safe effective vaccine available – and little Clara, for one, paid the price of this misinformation.

Again: Clara – daughter of wealthy, well-educated parents, no doubt well nourished – died after months-long deterioration from a complication of measles. While no vaccine is 100% effective, MMR is very effective. If vaccinated, chances are she never would have gotten the disease in the first place. If misinformation about measles and MMR was not promoted by anti-vaccine groups, chances are her parents would have vaccinated her.

It’s understandable that distressed parents seek someone to blame, in this case by pointing the finger at the doctors. And the blame should be placed, first and foremost, elsewhere – but not on the doctors: on the providers of misinformation that misleads parents into this bad choice.

Will there be any charges? Frankly, I don’t think there should be. Even if the doctors could have diagnosed SSPE earlier, SSPE is generally fatal. And although the initial decision not to vaccinate was the parents’, I don’t think criminal penalties are the right way to deal with this type of error, given the large amount of misinformation out there.

If any good is to come out of this story, it is for other parents to realize that the risk from preventable diseases is real and they can protect their children from it. If the inquiry raises awareness enough to make that happen, Clara’s tragic, untimely, preventable death may save other children.

She, however, will never reach five, never play or smile again.

Dorit Rubinstein Reiss
This article is by Dorit Rubinstein Reiss, Professor of Law at the University of California Hastings College of the Law (San Francisco, CA), is a frequent contributor to this and many other blogs, providing in-depth, and intellectually stimulating, articles about vaccines, medical issues, social policy and the law. 

Professor Reiss writes extensively in law journals about the social and legal policies of vaccination. Additionally, Reiss is also member of the Parent Advisory Board of Voices for Vaccines, a parent-led organization that supports and advocates for on-time vaccination and the reduction of vaccine-preventable disease.
  • Mike Stewart

    Very impressive article. Not because it is factual, or because it will help people, it just sounds SO credible! And look at this page, we have impressive images of knowledge in the art of medicine!
    Vaccines! The magic word that makes so much money for so few people, but they are important people. People we should trust. The fact that vaccines are poison doesn’t concern you, so why should it concern anyone else, right?
    You don’t save lives. You know it. Some of us that aren’t quite as…what is the word…evil? Perhaps that is harsh. Accurate? Likely.
    Yes, we know.
    You should think about deeper things, at least occasionally. Like your soul.

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  • I’m enough of an asshole that if I were to meet the poor girl’s parents that I’d say, “Scommetto che vorresti aver ottenuto il tuo figlia vaccinare ora, non è vero?”

    • Looks like they’re still blaming the doctors, but eventually I’m sure it will dawn on them. They made a really poor choice.

      As I read elsewhere, why trust the government and pharmaceutical industry when it comes to vaccines? That skepticism doesn’t seem selfish, but smart. Until it isn’t.

      • Dorit Reiss

        Part of the problem is that the assumption there is that most of the information about vaccines comes from pharma or from one government – and it doesn’t. What protects us, among other things, is that there are so many diffuse sources for that information – and they reinforce each others, showing vaccines are safe and effective.

      • Bobbie Lee

        Pure denial. Sad really, but down playing a chance of death from measles, when it’s fatal for 2 in every 1000 children, is foolish. When taking about something that is fatal, that’s not a small number I’m comfortable with. If there was overwhelming evidence that vaccines were harmful/ fatal (for example : to 1 in every 100 kids) and the rate of death/severe illness for those inflicted with measles was more like 1/100,000 kids; maybe these types of people would make sense.
        Even if a child that isn’t vaccinated gets measles & doesn’t die, they are still up against a chance of blindness, brain swelling (also deadly & can cause retardation), & severe illness like diarrhea, etc. Obviously those aren’t the same as death, but pretty severe life altering consequences.
        It shocks me that in an age where information is easy to access, we are dealing with people who are acting/ behaving, in such an ignorant way.

  • Jeff Winkler

    I do NOT believe this story at ALL… secondly even if I did… it still does NOT make a case for any vaccines… just look at the history of vacicnes, look at the CDC lies and you will know that Vaccines were not really needed in most cases and vaccines have had cancer in them, AIDS, Ebola on and on… The nut jobs are the ones advocating for vaccines because 1 child dies from measles… more have died and been permanently damaged every years by vaccines than have died from the diseases they supposedly protect… This case in particular… just look at the measles rate when the vaccine was introduced… very low rate of measles at the time … as a matter of fact the lowest point in measles history was when the vaccine was implemented… Spanish Influenza was a made up name and was in the vaccine given to the troops and later the populous and it STARTED the epidemic…

    • Dorit Reiss

      What don’t you believe? That a child died from SSPE? That she was unvaccinated?

      Serious problems from vaccines are very, very rare, and deaths even more rare. In contrast, pre vaccine the diseases killed. I’m not sure why you think rates of measles were low pre vaccine – that’s not what the evidence shows. Look at tables 1 & 2. http://jama.jamanetwork.com/article.aspx?articleid=209448

    • Andrew Lazarus

      Flu vaccine didn’t even exist at the time of the 1918-19 Spanish flu pandemic. (Typical antivax historical inaccuracy.)

    • Mike Stevens

      “Vaccines have had cancer in them, AIDS, Ebola”

      Thanks for demonstrating the utter wingnuttery of the antivaccine activist, Jeff.
      You make our task of countering it just so much easier.

    • No one cares if you believe or don’t believe. Ignorance is something that you anti-science types keeps you warm and fuzzy.

      And the rest of your ignorance? Laughable. You should be in comedy. Or on a 72 hour hold. Not sure which.

      • The 72-hour hold. They pose a risk to themselves and others.

    • Bobbie Lee

      If you don’t believe this story, look up the 18 month old that just died in Germany. Before a vaccine, 500 children a year died in the US.
      You’re argument is terrible and ridiculous. Your position is basically saying it’s “not that many kinds who die, so why get vaccinated?” That’s fine cause it isn’t your kid, right? You don’t care that it is most fatal to children 0-5 years old?
      One person with measles, has the potential to infect 12-18 people. That’s one case! Do the math. If it doesn’t kill a child, they can be left with retardation or blindness.
      The health care system is over loaded & broken, yet people like you are going to let your ignorance, cause more of a problem. What about parents who are poor and can’t get to a Dr in time? F them, right?
      You’re a piece of work.

    • barcas

      Explain to me how did “we” made the troops contract Spanish Flu through vaccines when the first flu shot developed was 13 (or was it 18) years after the pandemic? Also, do explain to me how did we manage to make a disease when we didn’t even know it was a virus at the time? (Common assumption was that a bacteria was the cause of the Spanish Flu)

      Also, do tell me – are you actually capable of reading a graphic representation of the statistic data at all? Because all I see is you rambling about things you have no knowledge of.

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  • Sandy Perlmutter

    Similar stories from Germany:

    http://www.thelocal.de/20130614/50305

    referred from this one, which also has all the nut jobs responding to it:

    http://www.thelocal.de/20150223/measles-cancels-classes-at-berlin-school

  • Tel

    Has any vaccinated individuals ever contracted SSPE? Or just the unvaccinated?

    • Dorit Reiss

      There were cases where vaccinated individuals did get SSPE – very rarely. But it’s never been linked to the vaccine virus: always the wild virus.

      Since no vaccine is 100%, some vaccinated individual can catch the wild measles virus and get SSPE, if they’re in the 1% failure. But their chances are a lot smaller. I hope that helps.

      • Tel

        Thank you! Do they always test for what specific strain of measles an individual has? Or only when tested positive? I know you’re not a doctor but I appreciate you answering these questions. It’s a tangled web out there. Lol

        • Dorit Reiss

          Here is my best understanding – and I hope some of the more scientifically knowledgeable people chime in. I think today they always test the strain in cases of SSPE, though not for every case of measles, because during an outbreak it’s not always feasible to test everyone. Some reports of SSPE are from before they could test, of course.

          • Mike Stevens

            Correct.
            All cases of SSPE as part of their diagnostic work up would have measles genotype testing on cerebrospinal fluid samples.
            (Of course, before there was genotype testing, it was impossible to tell strains apart.)

            • Dorit Reiss

              Thank you!

            • lilady R.N.

              The “Just The Vax” science bloggers, Science Mom and Catherina, have written about these youngsters who contracted measles, and who, eventually died horrific deaths from SSPE.

              All of those recent cases of measles virus SSPE were tested during their terminal illnesses and underwent autopsies where the wild strains of measles virus was found in the brain parenchyma.

              http://justthevax.blogspot.com/2014/08/sadly-another-aliana-has-sspe.html

            • Jeff Winkler

              This comment along with the article IS NOT proof that all were wild… neither is some government testing… People need to wake up… A nurse telling anyone to vaccinate… IS NOT and authority on the subject but instead a brainwashed government salesperson.

            • Andrew Lazarus

              RIght, the lizard people are lying about the measles strains… they are coming in their black helicopters… they want my precious bodily fluids… I’m melting…

            • Jeff Winkler

              No one NEEDS a measles vaccine…. learn from history, for once..

            • Mike Stevens

              Well, no one “needs” an education either, something you have ably demonstrated.

            • Katia

              Rep X 10!

            • barcas

              I refuse to believe you actually exist as it will ruin the fundament of my belief in humanity and that all humans have IQ score.

      • Yes vaccines aren’t 100% effective, but if we had near 90-95% vaccine uptake EVERYWHERE (not just on average, but in every community), then the herd effect would make the risk of catching these wild diseases near 0, if not 0.

        Sometimes I wonder if the more educated anti-vaxxers figured this out, and don’t vaccinate to eliminate what small risk there is of the vaccine, knowing that the herd effect protects their child. Of course, that “theory” fails if the vaccination rate drops too low, as it has in many wealthy, well-educated, liberal communities.

        • Jeff Winkler

          The above comment is an absolute LIE. Chicken pox for example should never be vaccinated for….. anyone who knows immunology and herd immunity would know this and not make such an uneducated comment… Looking at the measles rate when the vaccine was first implemented would be smart… the emasles was at basically it’s lowest rate in history when the vaccine was implemented.

          • Dorit Reiss

            Why do you think we shouldn’t protect children from chicken pox?

            And you’re wrong about rates of disease. http://jama.jamanetwork.com/article.aspx?articleid=209448

            • Sandy Perlmutter

              Good reference! Not too hard to understand if you finished high school, Jeff Winkler.

          • Sandy Perlmutter

            WTF are you jabbering about? My generation did not have a chickenpox option. We got chickenpox. Now we have shingles, which is a horrible revisit from herpes simplex, indwelling chickenpox. In particular, people who have had organ transplants or have other conditions that impair their immune systems are getting shingles. There is a vaccine for shingles (I have had it) but these immune-compromised people are subject to shingles! I hope you realize that “chicken pox should never be vaccinated for” is a cruel, ignorant categorical lie. And you have no idea what you are talking about with regard to measles either.

          • Andrew Lazarus

            Measles was not at its lowest rate in history. We had 750,000 clinical cases of measles in 1958 (including me). You have almost certainly confused the number of cases with deaths, which were much reduced by better medical care, and indeed by good nutrition. Learning how to distinguish morbidity from mortality would be smart. I suggest you learn this, before doing more posting.

          • Please provide peer-reviewed articles published in a high impact journal. Or STFU you ignorant fool.

      • Jeff Winkler

        Vaccines are not even close to 100%… seriously anyone advocating FOR vaccines is the moron… willful ignorance.

        • Dorit Reiss

          Childhood vaccines range from 70-99% effectiveness. That’s very high.

      • Tel

        Why is the wild virus not in the vaccine?

        • Dorit Reiss

          Because the wild virus is what causes disease. It would mean injecting someone directly with the disease. Instead, the virus is attenuated – weakened – in a sense, “trained” so it cannot replicate properly in a human host, and our immune system can quickly overcome it. That way, we create an immune response, but without the risks of the disease.

          • Tel

            So the vaccines don’t actually have the wild virus because its been weakened so there fore it’s a different strain?

            • Dorit Reiss

              It’s one strain of the wild virus that has been weakened. If you’re worried about the vaccine covering different strains (and if you’re not, I’m sorry), it does cover the strains. Here are helpful resources on that:
              “All vaccine strains and their wild-type progenitors are assigned to genotype A. Experiments with monoclonal antibodies have defined antigenic differences between the H proteins of genotype A vaccines and the H proteins of wild-type viruses grouped in other genotypes. However, there is only 1 serotype for measles, and serum samples from vaccinees neutralize viruses from a wide range of genotypes, albeit with different neutralization titers. More importantly, despite the presence of different endemic genotypes, vaccination programs with standard measles vaccines have been successful in every country where they were performed adequately. Suboptimal seroconversion after vaccination is likely the result of inadequate coverage; improper administration, transport, or storage of vaccine; or age of the vaccine recipients”

              Bankamp, B., Takeda, M., Zhang, Y., Xu, W., & Rota, P. A. (2011). Genetic Characterization of Measles Vaccine Strains. Journal of Infectious Diseases, 204(suppl 1), S533-S548. doi: 10.1093/infdis/jir097

              “There is only one antigenic type of measles virus. Although studies have documented changes in the H glycoprotein, these changes do not appear to be epidemiologically important (i.e., no change in vaccine efficacy has been observed).”

              http://www.cdc.gov/vaccines/pubs/pinkbook/meas.html

              In Graphic form: https://www.facebook.com/VaccineNation/posts/1600436436857578

            • Another way of thinking about it is to imagine the wild virus is a blue crab and the vaccine virus as the blue crab without its shell. Did that help any, or did I just make it more confusing?

  • Kathy

    Is this article still on the blog? I cannot find it.

    • Dorit Reiss

      Should be – try refreshing. I just used the link. I think our host is still straightening out bugs in the new server.

      • Yeah, I was changing a setting, and did it to the wrong article. I’m such a klutz.

        • Dorit Reiss

          May these be your worst mistakes in life.

      • Kathy

        now it works. Strange that I could see the comments in disqus but could not find the article on the blog at all, by any means. Bugs.

  • Lawrence McNamara

    SSPE is a horrible complication of measles – not only because there are no treatments, but there are also no signs of it until years after the initial infection….so something that the anti-vax brigade claims, on the surface, is a benign illness that clears up in a few weeks (in the majority of people) can still be lurking inside the child’s body & ultimately killing them years after the fact.

    • Kathy

      it’s freaky, to, to think that your child survived measles but now you have to watch her for a decade for this. Horrifying.

      • Dorit Reiss

        Incredibly. SSPE and meningococcal are both rare and both extremely frightening. This alone is a powerful reason to get MMR.

        • Jeff Winkler

          MMR has damaged far more people …. that alone is reason to question all of it… as well as the knowledge that the CDC used junk science as their main science for decades… omitted information etc.

          • Dorit Reiss
          • Bobbie Lee

            Please name what “damage”

          • lilady R.N.

            And…you links to citations to prove any of your ignorant assertions are….?

            You do have those links, don’t you?

            Too bad your education in basic science is non existent and too bad you parrot the “stuff” you’ve read on anti-vaccine and conspiracy blogs.

      • And SSPE is a slow progressive disease until it kills. I couldn’t even imagine being a parent in that situation. Watching a healthy normal child degenerate like that is horrific.

        And SSPE alone should end any argument that measles isn’t dangerous. Sure the risk is low, but it is significant and it is incurable.

        • Jeff Winkler

          The risk is higher to be damaged by the useless vaccine. you are a sharer of disinfo Skeptical raptor… absolute

          • Kathy

            Please cite your evidence

            • Sandy Perlmutter

              He doesn’t have evidence. He just has time on his hands while waiting for his social worker.

          • Andrew Lazarus

            Your argument that MMR is dangerous is wrong, but at least worth looking at. Given the 99.99% drop in measles incidence from pre-vaccine days (and the drop was sudden, too), your claim that it is “useless” is absurd, innumerate, and silly.

      • Jeff Winkler

        This is COMPLETE nonsense and that is what they are trying to accomplish… you being freaked out… It’s just not true… The vaccine has killed more than the measles has… the vaccine has damaged FAR MORE than the measles has. Research for yourself instead of listening to Dr.’s and RN’s who don’t know the truth and have been trained with absolute lies for decades.

        • Kathy

          I don’t have the means to run my own lab and do research studies so I will trust the thousands of studies done all over the world already.

        • Dorit Reiss

          Actually, MMR is a very safe vaccine. Measles, in contrast, has high rates of complications.

        • Andrew Lazarus

          What’s hilarious is that even antivax cranks can’t come up with as many MMR vaccine deaths in a decade as measles killed in one year.

    • Sandy Perlmutter

      Similarly for chickenpox, which used to be very common before we got a vaccine. Herpes zoster hides in the nervous system. My generation, 65+, are beginning to suffer from shingles, unless they take the shingles vaccine. Shingles is something you don’t want. I have a friend who had a kidney transplant and is thus immunosuppressed. Shingles hit him particularly hard, around the eyes.

      I definitely had the shingles vaccination!

  • Sandy Perlmutter

    The parents are both doctors? What kind?

    • Dorit Reiss

      I don’t really know. The articles didn’t say. Sorry.

    • Jeff Winkler

      The parents knew that the vaccine was more damaging at a higher rate than the disease. itself… Doctors (many of them) do NOT vaccinate their children…. others don’t realize the lies they believe about vaccines… they are ALL CONTAMINATED.

      • Dorit Reiss

        All doctors I know vaccinate their children. And I don’t think these parents’ example is a good one to follow. After all, they paid the ultimate price – as did their child, who had no choice.

      • Sandy Perlmutter

        Did you miss your meds today? Watch out, the spiders are going to crawl down the wall and EAT YOU!