a his & hers weblog of worlds apart
Parents have proven to be some of the best health advocates. The exponential expansion of newborn screening in the past few years is a prime example of the huge impact that parents can have on health policy. As with most other things, the internet and social media have served to exacerbate the impact of the parent advocate. The popularity and strength of the “mommy-blogger” is testament to this. But can a powerful parent advocate be dangerous?
There are a couple of examples that I have been thinking about lately. The juxtaposition between these two cases serve to highlight, in my opinion, the necessity and potential pitfalls of parent advocacy.
Addi and Cassi Hempel, Neimann-Pick C
I first heard about Addi and Cassi, the twins with “childhood alzheimer’s” (officially Neimann-Pick C or NPC), last Christmas. My sister forwarded me a link to addiandcassi.com after she’d heard about them through a friend of a friend. Addi and Cassi’s parents had set up the website so that friends, family and strangers could stay informed and share their thoughts, prayers and wishes for the twins. Since that time, it seems that Addi and Cassi are everywhere! Their parents, Chris and Hugh Hempel, have collaboarated with various groups, including the National Human Genome Research Institute (NHGRI), clinicians who specialze in NPC, international researchers and other parents. They have fought to push research, funding and awareness forward. Most recently, the twins were featured in the November issue of The Scientist magazine (registration required for viewing).
The Hempels message is one of hope and unity. They have managed to facilitate collaboration among an interdisciplinary group of researchers and scientists– quite a feat in the peer-reviewed world of academia. In learning about this family, you can’t help but feel that the NPC community would be at a huge loss without their work. And it has only been one year.
Jenny McCarthy and Autism
Jenny McCarthy and her son were featured on the cover of US Weekly a few months ago. The tagline read “Beating Autism: How I Saved My Son.” I found the accompanying article particularly disturbing.
As is widely known, Jenny McCarthy attributes her son Evan’s autism to his vaccinations:
“I don’t think autism is genetic. I have a family history of genetic vulnerability that my kid can’t detox vaccines…In 1983, when kids only got 10 shots, autism was 1 in 10,000. Now kids get 36 shots, and the odds are 1 in 150 they’re on the autism spectrum… When Evan went in, I was scared…They put the needle in his leg and he screamed. I felt a chill. It was like I was watching destiny happen, loss of eye contact, loss of language.”
There are several flaws in the above argument, the most obvious being that countless other things have changed for children between 1983 and today. Secondly, published studies do not support McCarthy’s vaccination hypothesis. But scrolling through the personal testimonials on generationrescue.org, a McCarthy endorsed website, I understand why parents of children with autism would find the information compelling. They cite scientific evidence and describe a study they conducted comparing the rates of autism in vaccinated and unvaccinated children. McCarthy criticizes the CDC for not conducting similar studies on a national level and encourages parents to see beyond the “rhetoric of public health officials.”
On more than one occasion I’ve heard physicians talk about treating children in hospital with diseases such as measles, which had become somewhat obsolete since the MMR vaccination became mainstream. When the message being delivered is not based on sound science and could potentially harm children, I think parent advocacy can be dangerous. It can also serve to alienate people. Who is advocating for those parents who tried the special vaccination detox diet and couldn’t “recover” their child from autism?
Social media, Social responsibility
Much in the same way that Jenny McCarthy has leveraged her “celebrity,” social media gives parents the opportuniy to amplify their voices and their cause. With this opportunity, however, comes a social responsibility to ensure that your message is comprehensive and based in truth. I believe that health-related advocacy work requires some collaboration with health proffessionals– even when their opinion differs from your own. I hope that parent advocates can take a page from the Hempels’ book, in order to make sure that their much needed work saves lives, rather than harms them.