5 min read March 21, 2019 at 10:45am
It is with some embarrassment I reveal that the pile of shame on my bedside has really not changed over the last several months. When I was high-school, I would devour books in a single sitting, leading to the need for regular trips to savour the fusty smell of the second-hand bookshop (remember that smell?). It would be nice to be able to point to a long list of achievements I've made in place of reading for pleasure, sadly, these, too have been few and far between, although I'm making more of an effort to self-care.
On top of the pile for some time has been the semi-autobiography of Peter Hotez, Dean of the US National School of Tropical Medicine, and head of the Vaccine Research Institute at the Baylor School of Medicine. I feel some connection to Peter's work; when I began my advanced training in infectious diseases, my first major presentation to my peers was on his work on the neglected tropical diseases and this was a major contributor to my desire to pursue training in public health (which, at present, also remains on my list of unfinished jobs).
Prof Hotez also gave an excellent keynote at the first conference I was "invited" to speak at (I was on the organising committee, there was a free slot, and I had something to say about HIV and syphilis in Queensland) in Brisbane in 2013 and I remember being energised by the concept of Blue Marble Health, and his passionate and charismatic speaking style. As well as being struck by the fact he was quite a bit shorter in real life than I'd pictured him (sorry!).
As my early career in infection progressed, I saw patients with measles, patients who were suspected of having tetanus (although I'm yet to be convinced I've seen a real one), and even a case of diphtheria, as well as hearing of another in the hospital I'd left only days before. With a couple of exceptions, I've steered away from engaging with the anti-vaccine groups.
In fact, I'm notorious for annoying some of my more vocal anti-anti-vaccine colleagues. I usually hastily point out that while conscious choice against vaccines is a problem, a far greater number of the under-vaccinated have missed their vaccinations because of social factors - lack of access to healthcare, poor health-literacy, or being from a marginalised community - than those stridently anti-science vaccine-objectors that come to mind whenever people say "anti-vaxx".
It was probably during this talk at ICTMM that I discovered that Peter was, as the subtitle of his book says, an "autism dad" as well as a vaccine scientist and paediatrician. Vaccines did not cause Rachel's autism is pretty much a three-way split between Peter's career as one of the giants of global vaccinology and neglected diseases; and the not-science (it's not pseudo-science, it's not science at all) of vaccination's non-link to autism. And the story of his daughter, Rachel.
The professional career of a titan in the field is always worth reading, although the details are a little light-on compared with Frank Bowden's most excellent autobiography "Gone Viral". The science is solid and heavily referenced to Peter's work, and those of his colleagues. I wonder if in places it's a little technical for a general audience, but I'd still recommend it unreservedly to anyone who is at all uncertain (or even interested) in the epidemiology of vaccine association with autism (spoiler; there is none. Zero. Zip. Zilch. Nada. It has been comprehensively disproven in multiple studies). Peter also describes some of the other research on the causes of autism, although the science here is much less detailed than the vaccinology, as you'd expect.
And the story of Rachel, and the Hotez family's life coming to terms with a daughter on the autistic spectrum broke my heart.
The dissonance of a child who seems different in some nebulous way. The feelings of coming to terms that your life is never quite going to be the same; changing the gear of your career plans to adjust to your beautiful child who just doesn't quite fit into the nicely ordered box of the modern educational system. Peter's guilt that so much of this work had fallen to his wife, Ann. And their not-quite-completely-described feelings of looming dread of what the future will hold.
Because I'm an autism dad, too. And so much of the Hotez tale, so eloquently and personally told in this book had me nodding in agreement and understanding.
The book finishes not with a tale of happy, neurotypical family ever-after (although it is somewhat upbeat about the future), but with Peter's realisation that science is not just about discovery and programs and implementation, but also what he calls "tikkun olam" - the Jewish obligation to "repair the world through good deeds and actions". Meaning taking our work and using it to help people; but also as science advocacy to raise the profile of important issues.
I feel like this year I'm starting to find my strides in the public health management of drug-resistance. I'm proud of the work of the team I'm part of - bringing this to remote Queensland (and hopefully beyond). Maybe I need to work on being a bit less shouty and strident; more of a science diplomat and less of a squeaky wheel doctor, but I'll put that on the pile with all the books. It feels like I've got a million ideas on where to go with work. Shaking them down and focusing on some specific goals is next.
Peter's story spoke to me; not because I'm obviously interested in his areas of work (I am). Not because he's a great scientist (although he is) or because while doing his work, he's cemented openscience through his work with PLoS (which he has). He's done it, while being an awesome dad under challenging circumstances.
Thank you, Peter, for sharing not only your life's work, but also your family with us. It's truly inspiring, for so many reasons.
Featured Image: Dust jacket from the book, believed fair use.