When I was a second year resident in pediatrics, I saw an 8-year-old girl in the emergency department for a cold. In many ways she was typical of many kids I saw at that time. The ED was full of non-emergency cases, and access to medical care was a challenge for these families. The emergency room was convenient, and we had the best graham crackers and popsicles.
But if she had really been typical, I probably would not remember her. She had severe developmental delay that her mother shared was from measles encephalitis. Prior to contracting measles, she was a normal healthy kid. She just had the poor fortune of being poor. Her mom said she was “just a little” behind on her immunizations when the measles outbreak in Chicago hit in the late ’80s.
In my mind, this was an immunization tragedy with an n=1 and the cause was access disparity.
For most of my time in an affluent pediatrics practice, I had a lot of immunization conversations. There was a lot in the news about vaccine safety. Some parents requested mercury free vaccines. Some wanted to spread vaccines out over a few visits instead of doing them all at one time. Some parents preferred to have the single component instead of combination vaccines. Some parents delayed brand-new vaccines. I supported all of this. I just could not support complete immunization refusal. There were a few patients who left the practice.
In my mind, this was an immunization tragedy with an n of about 10 and the cause was misplaced but genuine parent concern.
Of course, what I saw in my practice was representative of peds practices all over the world. On February 28, 1998, the Lancet published an article on the link between immunization against Measles-Mumps-Rubella (MMR), gastrointestinal disease, and autism. While we now know that the data was fraudulent, the article outlined case studies of 12 children who received the MMR vaccine and then developed autistic behaviors. This article appropriately caused parents to become interested in vaccine safety, but it did more to increase parental fear than any other single piece of information. On February 2, 2010, the Lancet officially retracted the article.
This week we have learned more about this fraudulent study and how it came to be published despite questionable methodology. It seems clear that Andrew Wakefield and other researchers falsified data to create a link between immunization and autism. Wakefield had plans for a lawsuit against vaccine manufactures and a number of businesses all lined up to profit from parental fear of vaccines, including testing services.
In my mind, this is an immunization tragedy with the n in the millions and the cause was greed.
You may be asking what the heck this all has to do with information technology? It is just the ranting of a really angry pediatrician? (answer: yes, a little…) Millions of kids are immunized every year. Why do we still struggle with immunization registries? Why is it done on a state by state basis? Why is it optional for meaningful use? Could population research help us identify a subset of kids that perhaps should not receive a particular vaccine or combination of vaccines? More and more questions…
It took 12 years for this study to be discredited and that is probably the biggest immunization tragedy of all.