Share your story about insulin access

Banting's Ghost has gotten enough funding to begin the documentary process thanks to 36 amazing Patreon supporters (and we still have room for more)! Without stories to document however, there is no documentary. That's where I need your help. Do you have a story-or have you heard someone tell their story and feel like it needs to be heard? Insulin access stories seem to be everywhere until you pull out a camera and notepad; then everyone sort of puts their hands in their pockets and start kicking rocks. There is a bit of a time constraint for capturing the first round of stories as I am enrolling in a nursing program this fall and will have additional responsibilities which will limit my ability to travel freely this fall.

If you're wondering what kind of stories I'm looking for, let me clarify: stories of people impacted or involved in issues which relate to insulin access. This could mean anyone from the CEO of Lilly and JDRF who are on one end of the access pipeline to someone on the complete opposite end, living in rural Utah and unable to qualify for medicaid AND unable to afford insurance premiums. Maybe you've lived off of samples from your doctor--or maybe you're the doctor. Maybe you're the pharmaceutical rep who delivers the samples to the doctor and you see all this very differently than those of us who are outside the industry.

This is a complex story with many perspectives. All of them are important to understand. I realize that people sharing their stories are putting themselves at risk and I am willing to be discreet and conceal identities if need be in order for my subjects to feel comfortable about opening up. I am committed to an honest representation of what my subjects share; I am not creating a hit piece against the industry nor a puff piece for it. I want to capture the struggle of people all along the chain of this issue.

Providing a platform and inviting you--that's all I can do. Now it's your turn:

  • Visit our contact page linked HERE or email me directly: steve@livingvertical.org
  • Share your name and relative location (I won't share this information publicly)
  • Give a brief summary of your story (doesn't have to be in depth, just bullet points about the main conflict you're experiencing
  • Let me know how you prefer to be contacted if we can work together.
  • Please note: I'm not looking to promote other blogs or personalities within the diabetes community through Banting's Ghost. This project isn't about sharing your workout and diet program or promoting your speaking tour or book.
  • If you have a blog or a book or whatever but you also have a story that relates to insulin access--then by all means reach out and get in touch. I'm not trying to exclude anyone--just trying to focus on stories about insulin access.
  • THEN SHARE THIS POST!

I'm excited to see how far this can go and what we can create together. It won't be easy and it may not even be successful. Documentaries are lots of work and sometimes they fizzle out. Still, the only way to know is to try hard.

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 your friends, it would be greatly appreciated!


Crowdfunding with Patreon: why it's right for "Banting's Ghost"

There are 5 days left to see if crowdfunding with Patreon will successfully launch the Banting's Ghost documentary project. My Patreon is at $391/month pledged by 29 backers. We need to reach $500/month in order to launch. I have gotten some questions about the way I am attempting to fund this project--specifically if it wouldn't be more beneficial to use a platform like Kickstarter which would allow one-time contributions of a larger amount rather than seeking the smaller, monthly pledges by crowdfunding with Patreon. Here are some facts about this project that you may not have known--and that I hope will clarify the choices I've made in funding it.

  • Banting's Ghost Documentary Project is an ongoing effort; a series. This isn't a one time production of one piece of media or even a predetermined number of pieces. It's an ongoing effort to document the lives of real people who are wrestling with the challenges of access to insulin. I believe that the greatest impact this project can have is if it's responsive. Light and fast. Guerrilla media--not one monolithic production that simply takes a position and holds it. I've chosen this kind of delivery of the documentary not only because it's what I can do best but because it's aligned most closely with how people consume media today.
  • Fewer and fewer people  sit down to watch a 90 minute documentary on Netflix. Everyone has the time to watch a 1-3 minute short on social media--or a series of stills that bring an issue to life. Sharing happens and on it grows. Shorter, episodic projects leave more flexibility and room for failure. Even the best effort sometimes misses the mark. When you're telling an ongoing story you have many more opportunities to explore different perspectives and even take risks because you'll have more chances to try again and connect with a variety of people.
  • The problem we are attempting to address through this project is complex. The solution must also involve complexity and the episodic approach is better adapted to this.
  • Having done a handful of successful and unsuccessful crowdfunded projects I know how incredibly hard fund raising is. I also know that I'm not naturally gifted at sales, specifically when I have to sell the value of my work. I want to DO the work, not sell the work. Still, unless the funding is there, nothing can be done. Patreon (monthly contribution model) allows me to do the fundraising once and then gives me a sustainable outlook for future funding which allows me to use more of my time as a documentary storyteller and less as fundraiser. If I have $750 pledged in monthly support, I can make a plan for the best work I can do with that funding. One time contributions can give a bigger bump in support but can't really be factored into planning.

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So why not accept one-time donations in addition to monthly support? What's the harm in adding more ways for people to give?

At the time of this writing I am not certain that Banting's Ghost will "go" since we are close to the end of the launch funding window and we haven't hit our target. If we can't cover the base costs then I will hold the contributions via Patreon and pause the campaign until we decide how to move forward--and no one gets charged in the meantime, no refunds have to be processed and all the support for Banting's Ghost will be managed through ONE platform. The alternative of having to chase down individual contributors and return funds adds more complexity to the endeavor.

If the project gets funded and is growing, then accepting one-off donations is no problem because I wouldn't need to be focused on building a base level of support but rather on growing the already established project.

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 your friends, it would be greatly appreciated!


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!