Insulin access before incremental advancement

I've always wondered how a cure for diabetes might have any hope of actually being delivered broadly enough to make an impact in the lives of those who need it most. Today there are thousands of people who are grappling with the untenable reality of insulin access while paying the ever-escalating prices attached to 22 year-old insulins like Humalog. The idea that developing the biggest ticket item ever put forth by the pharmaceutical industry would somehow lead to accessibility without a prohibitive price tag is unrealistic under the current model. Driving people to support incremental advancements that are increasingly hard to afford with no meaningful check and balance to the industry is at best misguided.

What's a documentary project going to do to fix this? An absence of voices that express the position of the silent majority is largely why I'm discussing this issue and asking for support for the Banting's Ghost documentary project. If you haven't yet guessed, the majority of people with diabetes aren't on twitter or blogging or making movies about their condition. They're not invited to attend conferences that guide the future of research, technology or policy. They are not heard in those gatherings and it's no surprise that their best interest is not represented. They are working multiple jobs, sacrificing good nutrition and leisure time that could be spent exercising or not sitting at a desk. They are worrying about how they will pay their rent AND buy their insulin. Homeless or sick? Homeless or sick? 

This is the silent majority and they don't care about the fancy new insulins that are 5% better than the "old" insulins that they still can't afford. They've never had a CGM and wonder what it would be like to know what their blood sugar is all the time so that they could relax a bit more. If this narrative sounds exaggerated or unfamiliar-that's only due to the inherent difficulty of building a successful PR campaign around the access before advancement credo. I'm done waiting for a big "community" organization to act in a way that promotes the interest of all the community--and give a voice to those who are unheard.

I know that I've spent many years of my life as part of that silent majority. When I first peeked into the world of the vocal minority (read: Diabetes Online Community) I found it to be largely well intentioned but unmistakably tone-deaf and out of step with the reality faced by most people with diabetes. I don't say this to be critical but rather to explain why I'm sticking my neck out to execute this documentary project. If it seems like I'm stirring the pot--I absolutely am. Telling these stories will raise issues to the surface that tend to be ignored--and that's really all I'm after.

Better yet, the Banting's Ghost documentary project is not about my story or perspective. Sure you'll get some of my views when it's my turn to talk but I only want to use my platform to shine a light on the stories of others who are always swept under the rug. Not just one story, but every last one of them--until the presence of the silent majority becomes too uncomfortable to ignore at the galas and the conventions--and eventually the board meetings.

Insulin access isn't a problem that I can solve with my camera but media and stories are an important step along the path to a solution. I'd argue that we haven't had a solution up till this point because those who really experience the biggest problem aren't meaningfully included in the discussion. That's something I think I can solve with my camera.

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If any part of this writing resonates with you, please support the Banting's Ghost documentary project. I'm working to get it operationally funded by the end of June and we are just over half way to our goal. If we reach July and the funding isn't there then I can accept "no" as the collective answer without feeling any sense of failure. This isn't an easy thing to sell--if it was, I'd be competing with other artists for this job. Ranting is more cathartic, inspiration is more pleasant. Reality is utilitarian, plain--and in some cases, just plain ugly.

If no one names the problem and humanizes its impact--how can we ever expect to change it?

Stephen Richert is a photographer and filmmaker who happens to live with type 1 diabetes. You can see his professional portfolio here

To support this project and all the creative efforts of LivingVertical become a Patron and get prints, ebooks and early access to media as part of the group of insiders driving the creative efforts of LivingVertical also please know that non-monetary support is always greatly appreciated. If you can share our work or connect us with people who might want to share their story, it goes a long way!


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Banting's Ghost: an insulin access documentary project

It might not work. These are some of the scariest words in the vocabulary of any creative and they are responsible for stifling the launch of countless projects that might have changed the world if they'd only gotten out of the front yard. As much as I've tried to turn my creative focus away from diabetes and towards the things that inspire, I feel like there is unfinished business. Inspiration means nothing without insulin when it's literally keeping you alive. That's why I'm using the platform and the talent that I have to try to make a ruckus about insulin access through a documentary project called Banting's Ghost--that will amplify the humanity in this otherwise very data heavy issue.

Banting's Ghost is the working title for this project and it will document the people who are struggling with access to insulin--not in a far off land but right here in the United States. I named this project for Frederick Banting, one of the lead researchers who discovered insulin in 1923 and promptly sold his share of the patent for $1. He was quoted as saying "Insulin does not belong to me--it belongs to the world".

Our current situation has departed significantly from Banting's altruistic vision. The system has run amok. The pharmaceutical industry has escalated prices that are untenable for insurers--who have responded by covering fewer and lesser quality options which is untenable for people living with diabetes who would like to survive. Community organizations cry, 'research for a cure' over the wailing of those people suffering because they can't afford access to 20 year old drugs.

We are expected to believe that advancements will lead to access rather than the other way around.

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Who are these people suffering and struggling you might ask? Maybe you--like me and most of those who are vocal and have time and following to share our opinions online--are still able to bear the weight of the dysfunctional system and are struggling forward under the burden in hopes that the finish line is at hand. I've got news for you. It's not. People who are struggling are not represented in diabetes advocacy--which is funded by the industry--directly and indirectly swaying those who might otherwise stand up and provide a check and balance.

I don't have all the answers. I have the ability to tell stories. It's a start. It's a missing piece of the puzzle and I'd argue that it's a really important one. I don't think that homebrewing insulin is the answer or that the diabetes industry should be decimated. I think that productive conversations begin with some empathy--or at the very least the inability to ignore a public relations fecal hurricane of stories that amplify the value of people over the pursuit of the status quo. There are a lot of data, graphs and charts out there to show that this crisis is out of control. What's missing is the living, breathing human element and that's what I'd like to amplify through the Banting's Ghost documentary project.

It might not work. How will it get funded?

True, it might not even get enough funding to leave the station, let alone gain the momentum it needs to create impact down the line. It's a bigger task than I can execute on my own, I know that much. I'm asking that if you believe this project to be a worthy endeavor that you back it with a small financial contribution. That's the only way it will fly. With a family to support and limited resources at hand--addressing a topic that is inherently unfriendly to the industry it's not difficult to see that the "fly by the seat of my pants" approach won't work this time around.

Still, I want to unfurl the Banting's Ghost documentary project in stages, according to the financial support that is available as we progress rather than waiting until all the necessary funds are in place. The first stage is a photo documentary project (inspired by Humans of NY) which is the most time efficient manifestation. My goal is for that to lead into a series of mini documentaries in video format as well as podcast episodes.

It might not work. It's something I've always wanted to try to contribute to the conversation in the diabetes community and the public and I am not afraid to fail--at least not so afraid that I won't try. Will you help?

Stephen Richert is a photographer and filmmaker who happens to live with type 1 diabetes. You can see his professional portfolio here

To support this project and all the creative efforts of LivingVertical become a Patron and get prints, ebooks and early access to media as part of the group of insiders driving the creative efforts of LivingVertical also please know that non-monetary support is always greatly appreciated. If you can share our work or connect us with people who might want to share their story, it goes a long way!