Why do we need better and more effective diabetes advocacy?

More than most conditions, diabetes is all about self-management. It demands constant care and attention, and for all the support out there – from our loved ones, healthcare providers, and others living with diabetes – so many of the really critical decisions are ours and ours alone, and no two patients are the same. That may explain why organizations like the ADA have made such a big deal of individualized care in the last few years. In fact, diabetes is itself made up primarily of two very different diseases – type 1 and type 2 – that differ in their causes, management, and experiences. I can’t help but wonder whether that individualistic streak, so crucial to managing diabetes, is part of the reason that our community still hasn’t formed a unified advocacy movement that can effect real, lasting change.

Don’t just take my word for it  – that was the assessment of the diabetes community offered by longtime HIV/AIDS activist Michael Manganiello at the recent Friends For Life Conference in Orlando. Mr. Manganiello knows a little something about what a patient-led movement can accomplish. After AIDS was first observed in the US in 1981, it was a widely misunderstood, demonized condition, and not a single cent was spent that year on research by the federal government or by industry. Now, nearly 35 years later, the NIH spends almost three billion dollars every year on HIV/AIDS research, and our cultural understanding of these diseases has largely outgrown the early prejudice and paranoia.

By comparison, building a similar movement in the diabetes community should be a piece of cake – there are an estimated 29 million people with diabetes in the US, compared to just 1.1 million with HIV. However, in 2013, the NIH funded only about one billion dollars for diabetes research (both type 1 and type 2). But then, part of the success of HIV/AIDS advocates reflected the circumstances around it, as Dana Ball discusses in this issue’s diaTribe dialogue.

When we think of advocacy, we immediately think of getting the attention of politicians and regulators, often through petitions and writing letters. But that is only the first of the five steps that comprise Mr. Manganiello’s Back to Basics approach (attention, knowledge and solutions, community, accountability, and leadership). Indeed, he emphasized that it’s critical to come to places like FDA and NIH armed with knowledge and even ideas on potential solutions. Saying we need “better research” is one thing, but actually telling policy makers what that better research should be is quite another. We also need to ensure accountability, particularly from politicians who are always going to have more “important” things – winning reelection, mostly! – to distract them.

Aside from those three steps, however, what we may be missing the most is a unified community. Everyone may manage their disease differently, but we must find common ground (like feeling stigmatized, as we discuss in this issue’s learning curve) to come together and demand real, specific change. We’re also going to need leadership that coordinates action. We have plenty of leaders in diabetes, but much of the work is siloed, with specific organizational agendas that often don’t overlap.

Perhaps most important of all, we need motivated people who don’t want to sit on the sidelines – those who cannot stand the status quo and want to do something about it. Diabetes may be all about self-management, but this is the kind of issue that we must all manage together.

Click here to watch Mr. Manganiello’s talk from Friends for Life. 

very best,

Kelly L. Close

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