Stepping foot into a restaurant when you have type 1 diabetes is like entering enemy territory. We all know that. No matter how hard we try to avoid temptations, eat smart, and bolus smarter; things almost never work out well.

But what I, for one, didn’t know, is that well over half of us—57%—just plum avoid going out to eat altogether. And it gets worse: 49% of us avoid going to social gatherings with friends and family, and 45% actually avoid going on vacation.

These are just a few of the findings of a new survey released by the American Association of Clinical Endocrinologists (AACE). The survey, called T1D Unmet Needs, was carried out by the prestigious Harris Poll folks and reached out to both adult T1s and endocrinologists in the trenches, so it aggregates the views from both sides of the fence, as it were.

Not surprisingly, 9 out of 10 adults with type 1 say their diabetes adds a significant emotional burden (and I can’t help wondering what’s up with that 1 out of 10 who disagree). Sixty-six percent say that living with T1D makes everyday situations challenging, 55% say diabetes takes “significant” time and energy, and more than half say it feels like the whole day revolves around managing their diabetes. Yup!

Other findings include the facts that 39% of T1Ds avoid driving (!) and 35% of us avoid applying for certain jobs. Oh, remember that whole “eat right and exercise” thing that docs recommend? 48% of us avoid exercise.

Ironically, while we seem to avoid social gatherings, we are also afraid to fly solo, with 37% of respondents reporting fear of being alone.

And most tragically, 35% feel they are a burden to their partner.

You can read details of the study here, and/or follow hashtag #T1DUnmetNeeds.

While the study didn’t clearly spell it out, it’s evident that the fear of lows drives about half the avoidance behavior, while fear of highs drives the other. Clearly, we need the tools to live in the middle.

Sanofi, Lexicon and Type 1 Diabetes

The survey was designed by the Harris folks with input from AACE and a pair of pharma companies, who also footed the bill: Sanofi and Lexicon. We all know Sanofi of Lantus fame, but who the heck is Lexicon? They’re a Texas-based genetic drug research firm. They’ve recently published the results of a Phase 3 trial of their first-in-class poly drug Sotagliflozin, which is a combo of a “Jardiance-style” SGLT-2 inhibitor and a new concept SGLT-1 inhibitor. In a nutshell, the SGLT-2 limits glucose re-absorption by the kidneys, while SGLT-1 does the same in the gastrointestinal tract, giving the med a double punch.

But what’s truly important to us is that this new survey focused on type 1s, signaling the possiblity that Lexicon may be working on an oral add-on to insulin that would be FDA approved for T1s, which is a pretty big deal, at least if the DKA issues associated with SGLT-2s can be sorted out.

Wait, you ask, aren’t those two pharma companies, like, competitors? Nope. They’re in bed together, at least on this drug. It’s complicated, as the drug shows promise for both T1s and T2s, but their agreement has Lexicon holding on to the T1 rights in the USA, while Sanofi will handle T1 globally outside the USA, and T2s everywhere. So what does being in bed with an outfit like Sanofi really mean? For Lexicon it meant $300 million upfront, and up to $1.4 billion (with a “B”) more if the drug reaches the market successfully.

I was going to make a snarky comment about these companies having an affair, but to be honest, I’m thrilled that a pharma company is making efforts to study their drug for the smaller T1D market. To help prep that market, the two companies have created a website called GoBeyondInsulinAlone to set the stage for docs to start thinking about increased poly pharmacy (multiple drug prescriptions) for glucose control in type 1s.

Better Type 1 Diabetes Meds Needed

Getting back to the survey, it wasn’t all about feelings. It also asked what both PWDs and endos would like to see, and how they view the future of diabetes care.

The number one desire of PWDs? Better meds. Fully 77% wish for meds that would keep them in range without funky side effects, while 93% of docs state they wish there were more they could do for their patients.

Despite the high ratings in the fear and avoidance departments, PWDs still hold on to optimistic hopes for the future, with 88% stating they believe that future advances in T1D care will lessen the burden. The docs are even more optimistic, coming in with an optimism score of 96%.

Researching the Burden of Diabetes

How big was the study? Technically, it was a pair of studies that were aggregated. And it was relatively small, with 255 adult T1s, and 253 endos who see at least one patient with type 1 diabetes per month. Apparently, the answers from both groups were “weighted” to put them “into line with their actual proportions in the population.” For docs this meant gender, years in practice, and region. For PWDs this meant age, gender, income, race/ethnicity, region, size of household, and both marital and employment status.

Image: lydiajeanart at Etsy.com

Of course, it’s hardly the first study of its kind. In fact, dQ&A Market Research, creation of uber-activist Kelly Close, published the results of a similar survey in January of this year in Clinical Diabetes, the American Diabetes Association’s (ADA) key research journal for docs in the trenches. And rather than a few hundred people, the dQ&A survey polled a whopping 4,575 T1s and 2,359 caregivers (but no doctors). The results were much the same. Quoting from this study’s abstract: “Participants reported stress, time demands, costs as a large barrier to self-care, and negative impacts on school, work, future planning, self-confidence, and social interactions as major issues facing people with diabetes.”

So did AACE really need to reinvent the wheel? Sadly, I think so, as docs who treat diabetes tend to be either AACE or ADA focused, with not much movement in between, so I think it’s a good thing that we are seeing a new focus on what it’s like to have diabetes highlighted in both camps.

“(These results are) a no-brainer for experts and expert-patients alike, but I hope this will help both create a dialogue between docs and T1D patients and stimulate educational programs for both sides of the equation, informed by the results of this survey,” Dr. George Grunberger, chairman of the Michigan-based Grunberger Diabetes Institute and AACE immediate past president, told DiabetesMine.

So it looks like all parties are in agreement about the major issues. The question now becomes: what do we do about it? Will new tools and better drugs really reduce the burden of T1D? Or will it just make treatment more complex?

Will the next survey show 5 out of 10 adults reporting a significant emotional burden, or will it be 10 out of 10?