If insulin co-discoverer Dr. Frederick Banting were still alive, he’d likely be weeping over how unaffordable and inaccessible his life-saving diabetes medication has become in recent years. Seriously, almost a century later, Banting must be turning over in his grave over how many people are now struggling, even dying, because they can’t get the insulin they need to survive.
With that imagery and outrage burned into his heart, longtime T1 and rock-climbing inspiration Steve Richert has launched a grassroots project to tackle this issue head-on. The 30-something father in Boston sees himself as an independent and necessary voice in the Diabetes Community, one who isn’t a “professional diabetes advocate” but someone without conflicts who possesses the photography and documentary skills to capture real stories of people experiencing this Insulin Affordability and Access Crisis across the U.S.
His photojournalism project was launched on June 2, 2017 with the clever working title of “Banting’s Ghost.”
“Inspiration is important, but I can’t offer any inspiration or value through my story to people who don’t have access, first and foremost, to affordable insulin,” he says. “My goal is to amplify the voices and share the stories of people that you’ve most likely never heard of, those who are marginalized and are making life and death decisions, to their own detriment, because they cannot afford insulin.”
His vision is to create a series of photo-vignettes that can be shared online and even compiled into an e-book of sorts, and eventually used to compile documentary film to tell the story of how insulin pricing and access is so incredibly messed up. And from there, Steve sees this as a potential tool that PWDs and organizations could use in their own advocacy efforts.
Whoa, quite the project! And honestly, we think if anyone can make an impact with this, it’s Steve — who has certainly made a name for himself in rock-climbing, adventure photography and documentary film making, and is never shy about telling it like it is with raw honesty.
Living Vertical to Insulin Pricing Photojournalism
For those who don’t know him, the New York native was diagnosed with T1D in 1999 at age 16. He’s most well known to those in the D-Community as the founder of LivingVertical, which uses rock climbing as an inspiration to show people that you don’t have to be limited by diabetes. His high school diagnosis motivated him to become an “outdoors guy,” and for that first decade everything revolved around having the freedom to travel and spend as much time outside as possible — hiking the Appalachian Trail, climbing and not letting diabetes stop him.
It was only in 2011 that he recalls Googling to find peer support, and finding the Diabetes Online Community. At that point, Steve recalls feeling like he had something to offer in sharing his experience to inspire others.
We first met Steve when he came to the 2012 Roche Diabetes Social Media Summit and partnered with Accu-Chek on his Project 365 adventure, a diabetes empowerment effort that involved he and his wife Stefanie selling everything they owned and living out of their rusty 1987 station wagon for a year, in order to travel North America and rock-climb every one of those 365 days. He eventually funneled that experience into an incredible Project 365 documentary, and then in the following years he climbed Mt. Kilimanjaro and Wyoming’s Wind River Range mountains.
“At that point, my daughter had just been born and I realized it was difficult to support myself and my family focusing on diabetes media. If I took a very industry-friendly position and made promotion and PR my focus, that’s where the money is and it’s the only way I could do this. Money talks, and I tried… but I guess I’m not good at the business side of things. At the end of the day, my diabetes is a very personal thing and I have a hard time working in a professional context where they have corporate agendas that are impacting diabetes. It wasn’t OK and just didn’t jibe for me.”
He adds that it was also D-burnout that pushed him to the sidelines, saying it felt like he was “giving my diabetes diabetes.” So since 2014, Steve says, “I’ve gone back to my own roots to find inspiration in creativity without putting diabetes at the forefront. Less is more sometimes, but you go through cycles, and that’s why I am back and talking about some of these issues again.”
The Grassroots Banting’s Ghost Project
Over the past year, Steve says he’s watched news coverage and stories being shared more often on Twitter and social media about insulin unaffordability and access, and it’s led him to start taking more interest — particularly with what he describes as a “tone-deaf” response from industry and patient advocacy orgs like the ADA and JDRF, which he sees as only providing lip service on this topic. He started “ranting” on social media, closely following the #insulin4all hashtag and becoming increasingly frustrated by the lack of real advocacy and action on addressing this crisis.
Clearly, Steve has strong views on advocacy efforts to date; he says they’ve been inadequate, and he firmly believes much of it’s tainted by industry ties and sponsorships, leading advocates and organizations to pull punches with PR instead of “rocking the boat” with industry sponsors. Whether one agrees with him or not, that’s a growing sentiment in the DOC and is gaining more steam as it appears in mainstream media reports, state legislative efforts and class action lawsuits focused on insulin price gouging.
All of that led him to this point. While the online ranting feels good and is cathartic, he says, it comes down to using his LivingVertical experience in photography, film and storytelling to do something that hasn’t been done before.
Steve views this as a media collective, something that can color and spice up advocacy efforts certain groups or individuals may be a part of. He envisions it not only including PWDs who are struggling with access and affordability, but industry insiders who may want to remain anonymous and share their conflicts, or D-parents who work within organizations and feel handcuffed, and even healthcare providers who don’t know how to navigate this issue that their patients are facing.
“It’s going to require different things from different people, and everyone can use and leverage that media as a springboard,” he says.
For those who have an hour or so to spare, Steve actually took to Facebook Live in May to talk about his idea and what inspired him to start this project. He refers to it as “a rant,” but it’s 100% worth checking out if you have the time. He also created a brief 2.5-minute synopsis video more recently for the official launch of the Banting’s Ghost project.
One inspiration for this is a similar, non-health documentary project called Humans of New York. It began in a small way much like this, but exploded and went viral across the globe. While Steve doesn’t see this as being on the same scale , he recognizes it could have a big impact if done right.
“It’s not that this will save the world and solve all the problems, but at same time you look at documentaries that have changed the way people look at social issues,” he says, pointing to Food Inc. and Forks Over Knives as two films that have moved the needle on the fast food industry and healthy eating issues. “There’s a big opportunity here, but it’s also a big risk because it might not work.”
So far, he has set up a specific page on his Patreon crowdfunding site devoted to his projects. For Banting’s Ghost, he has about 20 people who’ve collectively contributed about $220 a month to get this launched and started up. His goal: $250 a month to get started, to buy some necessary hard drives for photos and the Adobe photo and film-editing software needed to compile this project. From there, it’ll be a work in progress as far as travel and other related expenses.
“If it’s something the community sees value in and is willing to support, then I am willing to show up and do this work and put content out there so advocates can use it for their work,” Steve says. “But, at the end of the day, I am prepared for the fact that it may get funding for the next month, but then people may get tired and would rather rant and be angry instead of putting their back into a documentary effort like this.”
He insists that important to keep Pharma money away from this project, to give it the credibility it needs. Part of his idea is possibly interviewing former Pharma reps or execs, or those within Pharmacy Benefit Manager (PBM) orgs or insurance companies who might be willing to talk about this issue, even anonymously. With industry money on the line, Steve doesn’t think he’d be able to maintain the same kind of journalistic integrity — even if it’s just perceived, based on sponsorships.
At the same time, he says he’d be open to discussing potential collaborations that might help make this project succeed.
“People and companies can discount rants on Twitter, but when you’re faced with an in-depth connection with someone whose life is being negatively impacted by your actions, I think that gives some pause that you wouldn’t get from an angry tweet or ranting online. Hopefully, (this project) can provide some depth and context.”
He knows it will take a lot of research and time to document all of this, and he hopes to know by the end of June whether there’s enough community support to move forward.
“This is a shot in the dark, frankly. It’s part of a very large and complex puzzle, and this is something I can’t hope to accomplish by myself. This is an opportunity to impact change, in a way that I haven’t seen done before. It’s still a small stone, but hopefully it’s one that could trigger an avalanche.”