Who Cares About Type 1 Diabetes?


Last Friday, I had the pleasure of attending the 2013 DiabetesMine Innovation Summit, an annual conference that assembles a diverse set of players in the diabetes space to discuss technology and innovation in diabetes care. This was my second year attending, and both times I have enjoyed the event, as DiabetesMine does an excellent job of bringing together thought leaders in the diabetes space to discuss the now and the next.

This year, one of the primary topics was how healthcare affects access to diabetes care, both in terms of achieving the existing standard of care, and in terms of making the best-in-class technology options available. A panel of the payers– that is, representatives from healthcare companies like Aetna, Humana, and Kaiser– discussed how coverage decisions were made, and how the new healthcare laws would affect existing protocols.

I will leave it to others to discuss the ins and outs and rights and wrongs of the payer discussion. For my purposes, it is sufficient to note that the payers did not conceal that decisions about coverage are subject to both institutional inertia (assume unsafe until proven otherwise; avoid alternatives unless proven significantly better) and financially-driven motives (don’t give patients more care than is necessary; minimize the potential wastes and costs), as would be expected of any large corporations. What struck me– and what often strikes me at conferences like this– is the anger and indignation expressed by type 1 diabetics.

I recognize that this is a heretical statement in the middle of Diabetes Awareness Month, and from amidst a community of online advocates. But, at the end of the day, I’m a pragmatist, and I was not offended by the conservative and self-interested stances of the payers. Healthcare in this country is a business, and is run to make money. Payers must serve their own self-interests and the interests of investors in order to survive. Similarly, I am not offended or surprised that medical device companies attempt to shield their data with proprietary formats. I think it’s something that can and should be fixed, but I’m not angry about it. They, too, are trying to make money, and that’s the way it’s done in America.

And I would go a step further: I am not only not angry; I am thankful that anyone is paying any attention to type 1 diabetes at all. Let’s face it– we are 1% of the population in the U.S. That’s three million people. Not nothing, of course, but a tiny population relative to, say, the 50 million Americans that suffer from rheumatoid arthritis], or the 16 million American children living in poverty, or the 6.7 million American women aged 15 – 44 who struggle with fertility. In other words, we are a drop in the bucket, and a small market. As a relatively small market, we can’t expect the disinterested businessperson to care about us. Consider: if you made an app for type 1 diabetics that cost $10, and achieved 100% market penetration– that is, sold it to every last type 1 diabetic in America– you would have $30 million. Even ignoring the fact that no one would expect 100% market penetration, that’s peanuts to the innovators and investors in the tech world.

Plus, in America, most type 1 diabetics are not ‘charity cases.’ We proudly proclaim that we can do anything. That anything comes with big caveats — almost anything, assuming I allocate 50% of brain power to blood sugar management, and at least for the first few decades until complications catch up to me — but, still, we’re trying to figure out how to make daily care less burdensome, not trying to figure out how to live past the age of twelve.

No, I’m not angry or surprised that payers aren’t meeting our needs, that no one makes an amylin/insulin mix yet, or that strangers think my pump is a pager. Frankly, I appreciate that anyone gives us the time of day at all.

But they do. Lots of people do. The payers showed up for this conference, there are a number of successful companies serving primarily type 1 diabetics, and there is an entire research community around type 1 diabetes. Heck, we even appear in our fair share of movies.

Instead of getting offended when people don’t care enough, perhaps we should consider what does make people care about type 1 diabetes. Then we can meet people where they are, and help them help us. So why do people care about type 1 diabetes? In my ill-researched, off-the-cuff opinion, here’s what matters:

1. It’s the law.

I admit I have a libertarian bent, and I cringe at bureaucracies and cultivate a healthy distrust for the government. But there are certain things that the government is crucial for, and one of those is preventing the tyranny of the majority. Yes, we are a very small type 1 diabetic minority, but the government still has an obligation to ensure our rights as Americans.

In other words, the healthcare companies have to help us. Part of their warrant to sell health insurance is to offer coverage to sick people under certain conditions. Until recently, the conditions under which they covered type 1 diabetes were more limited, but, with the recent Affordable Care Act, the government has expanded the payers’ obligations to people with illnesses like type 1 diabetes. I am not a profit center for my health insurance company, but in order to gain the right to charge profitable patients, insurers have to take me along for the ride.

Payers are therefore not beholden to type 1 diabetics, or any other patient population for that matter. Their goal is spend the minimum amount in order to provide the amount of care that balances my needs now with the potential costs they are obligated to in the future if my care is inadequate. They are not evil or blind to the health needs of humans, but they can’t run their companies by catering to every demand for increased care. For better or for worse, that’s not how the system works. So instead of demanding care because we are owed it, or because it’s the human thing to do, we as type 1 diabetics need to work on the arguments that a better continuous glucose monitor now will save the payer some number of kidney transplants in the future. They have to cover us, and luckily our interests are arguably aligned– we both want to minimize adverse health effects. We gain leverage if we start from there instead of a point of expectation that they care about us as type 1 diabetics.

2. It’s an interesting problem to solve.

Social scientists like us for our online communities, and for our willingness to persist through questionnaires. Data scientists like us because we are some of the first quantified-selfers. Type 1 diabetics tend to be very engaged in their disease by necessity, and we have a disease that generates tons of data. These qualities make us attractive to researchers, who are always hungry for people willing to participate in trials, or diseases with data to analyze.

From the medical device angle, we are willing to stick ourselves, hang things on our belts, wear multiple devices simultaneously, manage different brands that don’t talk to each other, and pay recurring costs for supplies. Because the burden of the disease is high and constant, we are willing to spend money on devices that might be too cumbersome or inconvenient for many other people. This means manufacturers can design new instruments with new algorithms or interfaces, with multiple parts and needles, and we are happy to try them if they can give us better results.

On the biological side, type 1 diabetes is one of the most approachable potential uses of stem cell therapies, which makes us a hot topic in the stem cell field. In immunology, we represent an example of a complex autoimmune disorder with a relatively well-mapped genetic background, lots of biomarkers, an established animal model, and patients available for short- or long-term study. That makes it both interesting and possible to build an entire research community around type 1 diabetes, and to attract new researchers into the field.

That said, if there’s no money or too much resistance, the researchers can’t afford to study us. So if we want the field of type 1 diabetes science to progress, we have to ensure the research funding pipeline stays open, from non-profits like the American Diabetes Association and the JDRF as well as from the largest funder — the National Institutes of Health (NIH). Further, we need to stop complaining about how many times mice have been cured of diabetes. That is part of science, and part of learning about each separate part of the complex puzzle that makes up diabetes. We should embrace the researchers who are interested in solving our problem, and accept that curiosity is a powerful driver. In that way, they will be more equipped and willing to put more time, energy, and people into research that benefits a measly 1% of the American population, and we will be the winners in the end.

3. There’s not no market for type 1 diabetes.

We’re a small population, which makes software, apps, and other one-time purchases an unattractive market for many. But if you’re selling, for example, an insulin pump that costs several grand up front, and then generates recurring revenue of thousands of dollars a year, three million people is enough to be interesting. Case in point — there are a great number of companies trying to market new insulin pumps, and one of them, Tandem Diabetes, just raised $120 million in an IPO.

4. We are the tagalong sibling of type 2 diabetes.

That said, every businessperson worth her salt ends the pitch for a type 1 idea with, “And then we will be well-positioned to enter the type 2 diabetes market.”

Type 1 diabetes may be a small market, but type 2 diabetes affects close to 25 million people in the US, and that number is rapidly increasing. Though the underlying causes of type 2 diabetes differ from those of type 1 diabetes, many of the symptoms overlap, and therefore companies and products that address one market often hope to work in both.

As the smaller of the two populations, we type 1 diabetics stand to gain a lot from this overlap. The plethora of blood glucose meter choices out there? Hoping to tap into the type 2 market, and bonus if the type 1s show quick uptake. Glucose tracking apps and software? Train on type 1s, then apply lessons learned to the larger type 2 market. Amazing bandaids made of human skin that help diabetic foot ulcers heal? We type 1s will use them, but the money that made that research possible comes from the promise of the type 2 market.

Thus, every time I hear type 1 diabetics complain about the fact that the general populace doesn’t know the difference between type 1 and type 2 diabetes, I flinch a little. A lot of great technology and choice comes to us from that overlap, and it helps keep us from becoming an obscure autoimmune disorder. By definition, diabetes is a condition in which blood sugars are elevated, and though there are many causes for that elevation, the fact that we all share that high blood sugar means we can benefit from some of the treatments designed for subsets of the whole group. I, for one, appreciate that a lot.

5. People have type 1 diabetes.

Not many people have type 1 diabetes, but it’s not a rare or orphaned disease either. We are three million strong, and we tend to be very engaged in our care and very vocal about our needs. Further, we have parents who are heroically dedicated to getting the best care for their type 1 children, and the daily burden of the disease means patients and parents together move mountains to get the care they need. It is impressive how many of the people building new diabetes technologies or developing new treatments have a personal connection to type 1 diabetes.

On top of the many who end up working in the diabetes space, some of the people with connections to diabetes become philanthropists, and fund incredible research, care, and tools for type 1 diabetics. That is huge for us, and drives innovation even in the absence of a traditional market. As many words as I have, I don’t have any way to adequately thank the people who have given so much to cure a disease that affects so relatively few.

In sum, instead of getting indignant that no one cares about our teeny market, let’s appreciate the people who care about us at all, and figure out how to work with them so that they can serve us better. Don’t begrudge payers their money, but convince them they can make more by giving us more tools. Capitalize on the fact that we are an interesting puzzle to solve. Be willing to pay for choice and options in our small market, and embrace the similarities between the flavors of diabetes that allow us to benefit from the type 2 market. Finally, befriend all the payers and device manufacturers you can find, so that at the end of the day, they will think of type 1 diabetes not as just a small market, but as a burdensome disease with a face that looks like yours.

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Scott Strange
9 years ago

Hi Karmel,
I’m sorry I didn’t get to meet you at the summit! I’ve written a piece about this panel at my blog which tries to explain why T1s (and those with any number of chronic conditions) feel the way we do
I’m Sure All Concerns Are Absurd  

John Callinan
John Callinan
9 years ago

I have read numerous posts from individuals with T1D, and I would agree that many are angry (and I would say jaded); I would assume that’s the side effect of suffering from a chronic condition and hearing that a cure or cure-like treatment is only five years away (but hearing that every five years). I would disagree with your assessment that T1D is a small community so they should be happy with what little attention they get.  As much as we may not wish to admit it, money drives most things in life.  There is a tremendous amount of money to be… Read more »

9 years ago


You make several points that I wish we would use when talking to the insurance companies.  We need them to see how much they could save by paying for a CGM  just like they finally realized about paying for blood glucose monitors.  They, and our government, would save so much money from reduced complications (surgeries, hospital stays, doctor visits and that’s just part of the cost) it is worth it to pay for preventative care and devices.  I wish someone would figure that out. 

9 years ago

Thanks for this, Karmel — I think this is a great way to frame things, and I agree that the more we can get everyone’s incentives in line, the better our lives with diabetes will be. I also think it’s great that the payers showed up at the summit, because I think they probably learned a lot from speaking with people who actually have the disease. I feel like once you actually see how a CGM works, you’ve got a much better chance of understanding how ultimately cost-effective they can be — and that understanding might pave the way for… Read more »

9 years ago

Dan, with reference to your point, I love that old quote:  “If it was up to the NIH to cure polio through a centrally directed program… You’d have the best iron lung in the world but not a polio vaccine.”
– Samuel Broder, Former Director, National Cancer Institute.

Dan Fleshler
9 years ago

This was a very compelling piece. The central argument –T1Ds are a small community and actually get more attention than some of us think–makes perfect sense.  And I agree that insurance execs should not be reflexively blamed for wanting to make money; they are playing by the rules of a market economy. My problem is I can’t fathom why you seem to accept the premise that the market economy should guide health care.  If being a “libertarian at heart” means you don’t want the U.S. to join the rest of the industrial world and adopt a sane, single-payer health system,… Read more »

9 years ago

Karmel, your article is very well written. It shows the problems associated with T1D (on both sides of the financial coin, payer & patient). Although the Affordable Health care Law (AHL) was supposed to reduce costs, it will only increase patient cost. Rarely does a mandate reduce costs, as you stated in the article, payers are in business to make money. Payers have to factor in the mandated coverages,  in doing so, it inevitably ends up being passed to the customers in higher premiums & deductibles.  Being a disease minnow in a see of whales makes T1D a financial looser… Read more »

Amy Tenderich
9 years ago

Such excellent points, and a great takeaway from the Summit, thank you Karmel!
We do hope that the conversations we’re opening up with Decision Makers via the Summit will make waves enough to impact ALL people with diabetes for the better.

9 years ago

Interesting post.  I would like to add that the numbers of Type 1s are actually higher than 3 million in the U.S.  Sadly, a huge number of adult-onset Type 1s are misdiagnosed as having Type 2 diabetes.  Insurance companies certainly have not been smart about this, because the misdiagnosed tend to rapidly develop complications because of mistreatment/undertreatment.  Since a study was published in 1977 in the Lancet, 10-15% of people diagnosed with Type 2 diabetes have the autoimmune markers for Type 1, and have been misdiagnosed.  That equates to millions of people in the U.S. alone who are misdiagnosed.

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