Missing the Mark

I thought you and your community might be interested in this video:

Where do I begin? 

  1. How does a single blood glucose check simulate living with diabetes? You are nervous prior to poking your finger with a lancet? Try being nervous every time the countdown on your meter begins because you know the number is going to be out of range and you don’t want to confirm it. Or you don’t know if the number is going to be in range, so you err on the “ignorance is bliss” side of things. Or you know that, despite years of living with this disease, you will interpret that single number, that single point in time, not as data to help make a more informed medical decision but an indictment on your ability to manage this disease, live a healthy life, be a responsible adult (or caregiver), and brace for the shame, guilt, anger, and frustration that will come from that one number. And my prescription says I’m supposed to test 8-10 times a day.
  2. How does injecting saline simulate living with diabetes? Fun fact: Insulin can kill you if you mismanage your dose. The fear isn’t from the needle – that goes away after the first day. The fear comes from not knowing if the amount of insulin you’re taking will act appropriately in your system this time. The fear comes from hoping you remember you eat after you prebolus 15 minutes before your meal and avoid an unwanted hypoglycemia episode.
  3. Did you know it took me 15 minutes of scrolling through your fine print to discover your product was for basal insulin, only? Your product does literally nothing for me. I understand that companies choose to save time and character counts by saying “diabetes” when they actually mean “type 2 diabetes”, but it would behoove you to do a little research on your target audience before blindly distributing materials outside of your target demographic.
  4. Related: That text I quoted above was all I received along with the title of the email. Had you taken the time to introduce your product and your mission, this blog post would not be necessary.
  5. In discussing this video, and your product with my peers, there was a consensus that “pricks” were not the most difficult part of managing our diabetes. Yes, your diabetes may vary, but the physical mechanics of managing this disease are nothing compared to the mental jiu-jitsu required to get by day-to-day. Would you like to know what living with diabetes is really like for some people? Start scrolling.
  6. Your IndieGoGo pitch is littered with statements that are at the very least incredibly misleading and could potentially be interpreted as outright lies:
    1. “Diabetes is now a global epidemic requiring several painful injections each day” – You do realize some people living with diabetes are able to stay healthy through diet, exercise, and pills? You do realize type 1 diabetes, the diabetes that absolutely requires insulin delivered by an injection or through an insulin pump represents a small percentage of the total diabetes population? According to the CDC, 5% of adults with diabetes are living with type 1 diabetes.
    2. “Needles haven’t changed much since 1853. They create pain, suffering, infections, and dangerous medical waste” – I would like to think the manufacturing alone of my insulin pen needles has improved in the past 150 years. And all of those nouns apply to misused syringes. Your assertion is like saying cars cause accidents, human interaction is a key component. Also, do you know what really causes pain, suffering, infections, and dangerous medical waste? Lack of access and proper education.
    3. “Millions worldwide can’t get simple lifesaving treatments like insulin and vaccines because they lack refrigeration.” Close. They lack access to insulin, syringes, blood glucose meters, doctors, education (for themselves and their doctors), and much more. It isn’t about needing a refrigerator, it’s about needing a healthcare foundation.
    4. “[This IndieGoGo campaign] will also tell the world that we have a really big idea, and people like you want to make it happen.” This point has been expanded upon by others more eloquently, so I’ll briefly summarize their thoughts. Why are we the business foundation for your “big idea”? Why are we required to support the launch of your startup so you can turnaround and market your products back to us for an insurance-inflated price? Why are we the ones pumping money into a system that, with all due respect, requires a lot of effort to turn anything worthwhile back to us? If you want this in business terms: Why are your customers your investors?
    5. “Our team consists of world-class scientists and startup veterans.” Are there any people with diabetes on your team? Are there any patients on your team? Are there any people who could succinctly explain what life with diabetes is like so you could better appeal to your customers?
    6. “We can fight the world’s biggest public health problems with simple, scalable, and sustainable treatments. We’ll ensure that everyone on earth can access our products to empower them to achieve their maximum health potential.” If you brought this to any focus group, they would have ripped this part of the script up and translated it into something more approachable. I’m not an expert, but you just gave us a wall of business speak that does nothing to compel a donation.
    7. “Share the message that it’s time for a world with hashtag no pricks (#NoPricks).” Please, don’t say “hashtag”.
  7. Please, please, please, please, please stop using images of frightened children when talking about diabetes. Just stop.
  8. “For every dollar raised with this campaign, we will donate TWO dollars to a cure as soon as we are profitable.” This reads like you’re holding a cure ransom – and to my knowledge, there hasn’t be a cure for any type of diabetes developed yet. If you know something that we don’t, then you really are holding our lives hostage. Or you just need a copy editor.

This will come off like a rant, and for that, I’m sorry. I’m more upset than angry. I’m sure your technology is great, I’m sure there’s a worthwhile medical application for what you’re hoping to bring to the world, but you didn’t think this through. You didn’t consult the diabetes community on any part of your marketing or outreach. I’ve only listed 8 (or 13) points of contention, but there are more, I’m sure.

And if your first response to any of these is “we had no idea”, then that just proves you didn’t do enough work to figure this stuff out. We’ve been here all along. We want to help. Just ask. The fact that all of this misinformation and misdirection went into a $1 million fundraiser is troubling at best and if not disappointing.

You want a world with (hashtag) #NoPricks, I just want a world with #NoCompaniesLookingToProfitOffOfMyDiseaseInMiscalculatedMisunderstoodAndPotentiallyDeceitfulWays.

4 thoughts on “Missing the Mark

  1. In case it’s useful, here’s a post I wrote about the principles of participatory research, which may have helped this organization:

    http://susannahfox.com/2013/07/15/participatory-research-its-not-everything-its-the-only-thing/

    To sum up: Win by inclusion.

    My personal challenge is food allergy, which recently had a breakthrough product introduced — an epinephrine injector designed by two people who have food allergies and hated their EpiPens. My post on the Auvi-Q and related issues:

    http://susannahfox.com/2014/08/26/food-allergy-101-hold-the-blah-blah-blah/

    Like

  2. Hi Chris,

    Thank you for taking the time to give a thoughtful response, I certainly appreciate that! I am sorry that we gave the impression that we did. I sent a very short email to you, as previous methods of contacting you and others like you with long, thoughtful emails had failed to elicit response.

    It may also help to understand that this was not a long, contrived video campaign, but shot in one take after an idea popped into my head because I could no longer sit on my hands. I had to do something- I was frustrated with our performance thus far and how it paled in comparison to the ALS challenge.

    There are 5 of us in the company. We are all dedicated to global health equity and social impact. We will not aim to make profit at the expense of human life and suffering. As you can see, none of us are social/viral marketing or messaging experts. We are bootstrapping and trying to the best we can with the limited resources we have as we do not have the funds for social media marketing efforts.
    We are just trying (and sometimes failing) to connect with the communities are trying to serve. Insulin isn’t our only product, but one that we believe will positively impact the most lives on this planet. That’s why we are keeping the transdermal technology and the insulin product private in order to impact the most lives without the fear of big pharma or investors out-pricing the market and placing profits before people. We hope to change the world for the better through our transdermal delivery patch.
    The implications for a patch which reduces or wholly eliminates the need for drug refrigeration are immense for sub-Saharan Africa and developing countries where there is no electricity for a cold chain. We can get an ice cold Coca-Cola to the deepest darkest recesses of Africa, but we can’t provide needed refrigerated drugs. Something is clearly wrong with this picture and we aim to fix it! Currently we have met twice with the head of the Bill Clinton Foundation Health Access Initiative (CHAI, formerly the HIV AIDS Initiative) and the wheels are in motion for an introduction to the Gates Foundation which will help us achieve our mission. Till then we need some funds to continue our science and that’s why we launched our Indiegogo campaign. We are genuine in our message and where our hearts lie. We just need a little bit of help to move us along. Any help and insight you may be able to provide us would be most appreciated.

    Nonetheless, thanks for your time to express your concerns, and I will address them individually to the best of my ability below:

    Where do I begin?
    1. How does a single blood glucose check simulate living with diabetes? You are nervous prior to poking your finger with a lancet? Try being nervous every time the countdown on your meter begins because you know the number is going to be out of range and you don’t want to confirm it. Or you don’t know if the number is going to be in range, so you err on the “ignorance is bliss” side of things. Or you know that, despite years of living with this disease, you will interpret that single number, that single point in time, not as data to help make a more informed medical decision but an indictment on your ability to manage this disease, live a healthy life, be a responsible adult (or caregiver), and brace for the shame, guilt, anger, and frustration that will come from that one number. And my prescription says I’m supposed to test 8-10 times a day.

    It wasn’t meant to fully simulate living with diabetes, nothing of course can. It was just for a brief insight to help the general public begin to understand what people in the diabetes community goes through daily (or in many cases multiple times daily). One of the directors at the company, Grasshopper, told me a story about getting infected by malaria when he lived in Tanzania, East Africa. It took him over an hour and a half to bring himself to prick his finger for a blood test to confirm the presence of the parasite in his blood. In the end his girlfriend had to prick him because he just couldn’t do it. That’s why I was in the video instead of him, he just can’t do it, as it frightens him that much.
    I can’t begin to imagine looking over your shoulder your entire life. I tried to convey that a bit in the video, but it seems that wasn’t clear enough. Again, it wasn’t carefully contrived and scripted but meant to be truly genuine. I am sorry for what you go through, and that I didn’t do it justice with my comments.

    2. How does injecting saline simulate living with diabetes? Fun fact: Insulin can kill you if you mismanage your dose. The fear isn’t from the needle – that goes away after the first day. The fear comes from not knowing if the amount of insulin you’re taking will act appropriately in your system this time. The fear comes from hoping you remember you eat after you prebolus 15 minutes before your meal and avoid an unwanted hypoglycemia episode.

    Fair point. The saline wasn’t pleasant to begin with, but it meant to show how dedicated we are to have the public begin to grasp an iota of what people have to go through when injecting themselves with insulin. There is no way for me to simulate the risks and fears of hitting an artery with insulin & going hypoglycemic. I will never fully understand it, but again I just meant to give people an idea of the procedure involved.

    3. Did you know it took me 15 minutes of scrolling through your fine print to discover your product was for basal insulin, only? Your product does literally nothing for me. I understand that companies choose to save time and character counts by saying “diabetes” when they actually mean “type 2 diabetes”, but it would behoove you to do a little research on your target audience before blindly distributing materials outside of your target demographic.

    This isn’t meant to mislead, but to make an emotional connection. We have tweaked our campaign in response to other feedback from people in your community that said the message of a better treatment and better world got buried with too much technical information upfront. Our basal insulin patches can indeed be used for Type 1, but of course bolus will still need to be taken. Still, fewer shots and more consistent control and dosing is better, I would hope. We will develop bolus insulin patches as soon as we possibly can- we already know conceptually how we would tackle the problem. We just need the funds to complete our studies. Thus, we understand the very important distinction between Type 1 and 2, and were intentionally inclusive of both.

    4. Related: That text I quoted above was all I received along with the title of the email. Had you taken the time to introduce your product and your mission, this blog post would not be necessary.

    As above, I had attempted to introduce our product and mission before via email without response from many bloggers and people living with diabetes. This was an attempt to get people interested and open to learning more about us. Sometimes when people share stories some of the associate message is lost. Sorry if that wasn’t the best approach for you. Our Indiegogo video ( available here: bit.ly/NoPricks ) goes through our mission and our values.

    5. In discussing this video, and your product with my peers, there was a consensus that “pricks” were not the most difficult part of managing our diabetes. Yes, your diabetes may vary, but the physical mechanics of managing this disease are nothing compared to the mental jiu-jitsu required to get by day-to-day. Would you like to know what living with diabetes is really like for some people? Start scrolling.

    Again, I can’t imagine. Sorry for not making that clearer. This project has left me truly in awe of the strength of individuals and the community at large living with diabetes. My little brother had leukemia when he was younger (fine now) and I know the toll chronic illness takes on patients and families. I can’t imagine it coming in such an inconsistent and unpredictable form.

    6. Your IndieGoGo pitch is littered with statements that are at the very least incredibly misleading and could potentially be interpreted as outright lies:
    1. “Diabetes is now a global epidemic requiring several painful injections each day” – You do realize some people living with diabetes are able to stay healthy through diet, exercise, and pills? You do realize type 1 diabetes, the diabetes that absolutely requires insulin delivered by an injection or through an insulin pump represents a small percentage of the total diabetes population? According to the CDC, 5% of adults with diabetes are living with type 1 diabetes.

    We were very careful in using credible sources and statements for the campaign. Of course we realize that some people don’t need insulin injections, and that the international estimate is 5-15% prevalence of Type 1. Even with a small percentage of Type 2s needing insulin injections, at such huge numbers, this disease has reached epidemic proportions. I am sure you don’t disagree that there is an ignorance of the gravity of living with diabetes outside those directly dealing with it. These statements are meant to convey the magnitude and gravity of the problem to people who have no clue.

    2. “Needles haven’t changed much since 1853. They create pain, suffering, infections, and dangerous medical waste” – I would like to think the manufacturing alone of my insulin pen needles has improved in the past 150 years. And all of those nouns apply to misused syringes. Your assertion is like saying cars cause accidents, human interaction is a key component. Also, do you know what really causes pain, suffering, infections, and dangerous medical waste? Lack of access and proper education.

    I agree that the manufacturing and design has improved incrementally, but the bottom line is that a small piece of metal physically disrupts the skin and creates a byproduct that is biohazardous and must be disposed of carefully. Compare this to other technologies 150 years ago- printing, communication, transportation, and there is no comparison in development. Our product completely eliminates those nouns, wherever you might attribute them.

    3. “Millions worldwide can’t get simple lifesaving treatments like insulin and vaccines because they lack refrigeration.” Close. They lack access to insulin, syringes, blood glucose meters, doctors, education (for themselves and their doctors), and much more. It isn’t about needing a refrigerator, it’s about needing a healthcare foundation.

    Completely agree. Again I think some message content was lost in the sake of time. What we meant by this is that even when a community has all the things you mention, and some foundation/infrastructure, they may get insulin that is denatured/spoiled because of lack of refrigeration. A friend in Nigeria was telling us that people bury their insulin as deep as they can dig to keep it somewhat cool, and dilute doses to make it last. They have to dig it back up when the rainy season starts so it doesn’t get washed away. Once again, our product will bypass all of these needs and will be simple to distribute and use.

    4. “[This IndieGoGo campaign] will also tell the world that we have a really big idea, and people like you want to make it happen.” This point has been expanded upon by others more eloquently, so I’ll briefly summarize their thoughts. Why are we the business foundation for your “big idea”? Why are we required to support the launch of your startup so you can turnaround and market your products back to us for an insurance-inflated price? Why are we the ones pumping money into a system that, with all due respect, requires a lot of effort to turn anything worthwhile back to us? If you want this in business terms: Why are your customers your investors?

    We are doing things differently. We are not a Big Pharma company and never will be. This forces us to take a creative approach. $1M barely scratches the surface of what we need to get to market. A large part of this is to raise awareness about us and connect with the diabetes community so that we can have conversations just like this. We thought it would be a unique and compelling opportunity to be involved in a product meant to serve your community and keep us close to the community and to our values. We will actually sell much cheaper to insurance than current treatment options. Our whole goal is to make this better for everyone involved. We will make this as cheap as possible, and donate as many patches as we can to help people achieve their maximum health potential. We will succeed with or without this campaign, but any money we raise decreases the risk of having to sell equity to people who care only about the bottom line. VCs scratch their heads when we tell them we plan to operate in perpetuity to make sure we help as many people as possible, not sell at the first offer so that we can get rich. We see you as people, not profit centers. Truly.

    5. “Our team consists of world-class scientists and startup veterans.” Are there any people with diabetes on your team? Are there any patients on your team? Are there any people who could succinctly explain what life with diabetes is like so you could better appeal to your customers?

    We have a group of people with diabetes that we work with closely and bounce ideas off of. But individuals can’t possibly capture the experiences of others, so even with their input we don’t always get it totally right.

    6. “We can fight the world’s biggest public health problems with simple, scalable, and sustainable treatments. We’ll ensure that everyone on earth can access our products to empower them to achieve their maximum health potential.” If you brought this to any focus group, they would have ripped this part of the script up and translated it into something more approachable. I’m not an expert, but you just gave us a wall of business speak that does nothing to compel a donation.

    Thanks for that input. That appeals to people who are trying to understand the magnitude. You are right, not effective in compelling emotional attachment.

    7. “Share the message that it’s time for a world with hashtag no pricks (#NoPricks).” Please, don’t say “hashtag”.

    That bugs me too. Voiceover person said it and it was too late to revise 

    7. Please, please, please, please, please stop using images of frightened children when talking about diabetes. Just stop.

    Thanks for the input. The images were taken by a photographer for a diabetes awareness campaign and he graciously allowed the use of his photos for our Indiegogo.

    8. “For every dollar raised with this campaign, we will donate TWO dollars to a cure as soon as we are profitable.” This reads like you’re holding a cure ransom – and to my knowledge, there hasn’t be a cure for any type of diabetes developed yet. If you know something that we don’t, then you really are holding our lives hostage. Or you just need a copy editor.

    Intentionally vague because we don’t know precisely when we will be profitable, and what the best candidate/funding landscape for a cure will be at the time. We will ask the community for their input on where we should put the money. I assure you we are not holding lives hostage and don’t know of any cures.

    This will come off like a rant, and for that, I’m sorry. I’m more upset than angry. I’m sure your technology is great, I’m sure there’s a worthwhile medical application for what you’re hoping to bring to the world, but you didn’t think this through. You didn’t consult the diabetes community on any part of your marketing or outreach. I’ve only listed 8 (or 13) points of contention, but there are more, I’m sure.

    No apology needed, I genuinely appreciate the input and the time you took to share it. We did the best we could with what we had in the time allotted. We didn’t involve much of the diabetes community because when we first reached out we were rebuked and brushed off. I understand why- you all are used to people telling you they have the next great thing for you. I get that.

    And if your first response to any of these is “we had no idea”, then that just proves you didn’t do enough work to figure this stuff out. We’ve been here all along. We want to help. Just ask. The fact that all of this misinformation and misdirection went into a $1 million fundraiser is troubling at best and if not disappointing.

    We had ideas, some were clearly just wrong!  See above. We were initially rebuked.

    I hope this all helps, and would love additional feedback and conversation.

    We had a live interview with TuDiabetes you may wish to watch to learn more about who we are and how we are approaching this. https://www.youtube.com/watch?v=wBiOUNM9Nx4

    You want a world with (hashtag) #NoPricks, I just want a world with #NoCompaniesLookingToProfitOffOfMyDiseaseInMiscalculatedMisunderstoodAndPotentiallyDeceitfulWays.

    Now there is a hashtag!

    I look forward to hearing back from you.

    All the best,

    Devon

    Like

  3. I need to agree with Chris on this one. Though I do believe (perhaps naively) that Devon’s heart is in the right place, these videos still seem to miss the mark. Learning to inject insulin or prick one’s finger is something that comes quite quickly, and it really is “virtually painless”. In fact, there’s a video out on the ‘net of me and every single medical sharp I stuck in my body through the course of a month, and even with that I acknowledge that it barely scratches the surface. I’m sure many of us would gladly take MORE injections if it meant not worrying about the other stuff (and, by the way, I’m pretty sure if you asked 1000 people what stems their fear of hypoglycemia, not a single one would mention the possibility of hitting an artery. It’s about calculating and delivering the right dose at the right time, something this technology can’t do.)

    The responses, while appreciated, still leave me scratching my head. How can this be used in parts of the world where today’s insulin is inaccessible? I’m not quite sure how this change in delivery can overcome the temperature-sensitivity of insulin. But if they discover a way to make insulin stable in excessive heat, I’d love to have some…in injectable form.

    To me, this technology and outreach seems to fix the inconsequential the low-hanging fruit, while just casually acknowledging the other stuff. It’s like saying the part about cancer treatment that needs to be fixed is the loss of hair, even though it could also cause you to feel violently ill, become frustratingly weak, or die.

    Like

  4. Pingback: It’s Not What You See | Imperfect Pancreas

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