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.

Karmel Allison

Karmel was born in Southern California, diagnosed with Type 1 Diabetes at the age of nine, and educated at UC Berkeley. Karmel now lives in San Diego with her husband, where she is loving the sunshine, working in computational biology at the University of California, San Diego, and learning to use the active voice when talking about her diabetes.

Karmel Allison

Karmel was born in Southern California, diagnosed with Type 1 Diabetes at the age of nine, and educated at UC Berkeley. Karmel now lives in San Diego with her husband, where she is loving the sunshine, working in computational biology at the University of California, San Diego, and learning to use the active voice when talking about her diabetes.