written by Tara Haelle

Next week, the CDC’s Advisory Committee on Immunization Practices will decide whether to recommend the MenB vaccine, which protects against the B strain of meningococcal disease. Strains A, C, W and Y are already covered in current vaccines. Over at Forbes today, I wrote about some of the issues – mainly cost and the rarity of the disease – the CDC will consider. But I also wrote about the efforts of photographer Anne Geddes in raising awareness about meningococcal disease. Yes, THAT Anne Geddes – she of the adorable babies in flower petals and pea pods, “under the sea” and posing as acorns.

I admit I jumped at the opportunity to interview Anne Geddes. (You can watch the complete interview – and get a sense of how I interview folks – in the video below.) After all, I love photographing babies too! But there was another reason I was thrilled to interview her: we have shared a common photography subject, one of the amazing survivors she photographed for her awareness project Protecting Our Tomorrows: Protecting Against Meningoccoal Disease, which she describes here.

Jamie Schanbaum, whom I mention at the beginning of my Forbes piece, was a student at the University of Texas at Austin when she developed meningitis, which led to seven months in the hospital and loss of both legs and all her fingers. I met her while doing my graduate degree in photojournalism because I wanted to photograph her for my thesis, which, you’ll be completely unsurprised to find out, was a series of visual and written stories about families and individuals affected by vaccine-preventable diseases. One of those stories I’ve written about before on this blog, that of Nicolis Williams, who did not survive meningitis.

My photojournalistic, candid style is quite different from Anne’s gorgeously crafted portraiture, but both of us captured Jamie’s spunk, strength and intensity. She’s a hell of a survivor, having gone on to win paralympic events in cycling. You can see the images both Anne and I shot here, as well as some other survivors Anne photographed that she gave me permission to include. You can see the full series and some great behind-the-scenes images at this Tumblr.

In addition to interviewing her and Dr. Leonard Friedland from GSK (one of the pharma companies that manufactures a MenB vaccine and which supported Geddes’ photo series.), I wanted to hear what drew Anne to do the series and how she approached it. When I told her we had both photographed Jamie, she told me how her image of Jamie came to be:

“She came to Toronto for the image, and I was rummaging around in a warehouse in Toronto for props for this image. A lot of survivors in this series don’t have legs, so I had them on beautiful pillars to represent the sense of strength and stoicness. There I was in this warehouse, and I spotted a bust of Helen of Troy in the corner. To me, Helen of Troy in Greek mythology is the most beautiful woman and the warrior princess, and I thought, wouldn’t that be fantastic to have Jamie sitting on top of Helen of Troy. When Jamie was sitting up there on top of Helen of Troy, I thought two warrior princesses together, and I think it perfectly sums up everything that she stands for.”

Indeed, Jamie is a warrior. While both her pluck and her beauty come through in Anne’s image she she sits atop Helen, my images focus a bit more specifically on that warrior spirit and moxie. Ann

e told me that all 15 of the survivors were just as remarkable as Jamie, each with their own unique stories and families who suffered and fought with them. “It’s a really exciting time for me as a photographer to create a series that is so meaningful,” she said. “What a gift to me as a photographer to be able to share in these 15 young survivors’ lives and to speak to their families and hear their stories.”

Geddes also explained how this series actually relates to her better known subjects: babies, babies and more babies: “One of the wonderful things about children and young people is that they see things in a different way, they have this inner energy and inner spirit, which is what I love about new life. It’s why I’ve photographed babies in particular for more than 30 years. And these survivors ranged through all different ages, but one of the most interesting things I found was that nobody ever quit on me. When you’re photographing children, they have a sort of short attention span, but none of these 15 survivors ever did that. They all, even according to their age, knew why they were there in the studio and knew that they had a special message to deliver in their own way, and I think each and every one of those 15 delivered that message, which was very personal for them.”

She hopes that the series not only raises awareness of meningococcal disease but also provides an opening for parents to talk about the disease, its symptoms, and the vaccines available for their older teens and young adults. As Friedland pointed out, “These are stories that we wish we didn’t have to tell. If we took full advantage of modern science and modern vaccines that protect against meningococcal disease, we would hopefully not have these stories in the future.”

Strain B of meningococcal disease is not common in the U.S. – about 55 cases occur a year – and is far more common in the U.K., where over 1,000 cases occur annually despite the much smaller population. But the recent spate of college outbreaks of meningitis actually involved the B strain, which is what led the FDA to approve two vaccines – Pfizer’s Trumenba last October and GSK’s Bexsero in February. And it’s anyone’s guess where the disease will pop up: “We cannot predict who will come down with meningococcal disease, and the disease can come on very suddenly,” Friedland said. “Vaccination is our best tool for prevention.”

Friedland also shared his story, which I thought is worth including here since, as an employee of GSK, one of the much-maligned pharmaceutical companies that incurs great distrust from those uneasy about vaccines, he would qualify as one of those “evil minions shills” who just push vaccines. Except, lo and behold, he ended up there because of how much he believes in vaccines.

“I’m a pediatrician as well as a vaccine researcher at GSK,” he said. “I started out my training back in the late 80s before many of the modern vaccines that are commonly used were licensed, and I got to witness firsthand the miracle that vaccines impacted at the patient level and at the population level. And from then on, I said I had to work in the vaccine field because it’s just so critically important what can be done through modern science. And it’s an honor and a privilege to work and interact in the field with someone like Anne who can visually capture these stories.”

He pointed out that the CDC’s approach to MenB recommendations – first recommending it for high risk groups last February and now reconsidering it as a routinely recommended vaccine on the schedule – is an informed, cautious approach.

“The Centers for Disease Control are taking very thoughtful approach and prioritizing their approach because these vaccines were just recently licensed, one at the end of December and one in October,” he said. “The first thing the CDC wanted to address was the group at highest risk, so people who have underlying medical conditions that place them at high risk, and they also wanted to address what to do in these outbreaks.”

There is a good possibility that ACIP will make a broader recommendation, though the vaccine is already available to the general public ($160/dose, two to three doses). A recent survey conducted by GSK found that 83 percent of parents want their child vaccinated against all strains of meningitis, but fewer than half have discussed the symptoms of the disease or how it’s spread with their kids.

“I think that’s surprising but it’s also an opportunity to highlight how important it is to have these discussions and particularly this time of year,” Friedland said. “We always look to the summer to get everything ready for the fall, and on the list should be are our children up to date on their vaccinations.”

The nonspecific symptoms unfortunately resemble those of many other illnesses: nausea, vomiting, sensitivity to light, weakness and confusion. What’s different is how quickly the disease can take over – within hours. A former high school classmate of mine died his freshman year in college within 24 hours from the disease.

I hope readers will take the time to view all of Anne’s portraits of meningitis survivors. She told me that Life Magazine inspired her to become a photographer because of “the beautiful way that photographers were able to tell a story just through a single image.”

“I tried to touch on that in this particular story,” she explained. “A single image of young Jamie, for instance, sitting on top of Helen of Troy, with the loss of her legs and her fingers and everything that represents, the story is right there.”

See our full interview below.

