ADA’s CEO on Paula Deen, the Blue Circle, and Representing Adults with Type 1 Diabetes

Last week, we interviewed the American Diabetes Association’s CEO Larry Hausner on that organization’s ambitious plans for the next few years. FYI, Larry is also currently chair of the board of directors of the National Health Council (NHC), a national patient policy organization representing all people living with chronic illness.

In our phone interview, in which he was very generous with his time, we talked about what the NHC organization does, along with asking Larry about all sorts of hot diabetes topics, like “accidental advocate” Paula Deen, what ADA thinks of the Blue Circle, and what they’re doing to embrace the adult type 1 population.

Read on to learn his thoughts:

“At the time it seemed horrible, but it got diabetes and nutrition on the map for a short period of time.”

— CEO Larry Hausner, on the Paula Deen diabetes fiasco

DM) First off, can you explain the crossover with your work at the National Health Council, which handles national advocacy for ALL chronic illness?

LH) My feeling is that the needs in diabetes are so big, none of us can do this alone. The more we can collaborate the better, and the quicker we’re going to change life with diabetes for all.

My job with the NHC is a one-year position as chair, and then a three-year term being vice chair.  ADA is a member organization, along with about 50 other of the nation’s leading patient advocacy groups. The goals are pretty wide:

• To improve the health of all people
• To increase support for health research
• To strengthen the community of patient advocacy organizations

In a sense it’s a trade group of patient advocacy organizations — an opportunity to get together and share. It’s about putting patients first. We don’t do anything disease-specific.

What are some examples of the NHC’s work?

Our membership covers everything from the American Cancer Society with a $900 M budget to small organizations with just half a million.  Like the Better Business Bureau, there are requirements to be a member, so we’re vetting these advocacy organizations.

We monitor big national issues for patients, like access to essential health benefits and the healthcare provider relationship.

There are about a dozen people on staff. Most of their time is spent in Washington, DC, on the hill, lobbying. For example, a bill was just introduced into legislation called the MODDERN Cures Act by Congressman Lance from New Jersey. It’s about getting the right meds to the right people.

The NHC holds one annual meeting a year where all the organizations get together to discuss what’s new on the Regulatory front (this year’s was just held in February).  We’re also developing a database for the website with input from NIH to bring researchers together, a big listing of grant opportunities.

Before you came to ADA, you worked in leukemia advocacy. What’s your personal connection to diabetes, if any?

My connection to diabetes is a small one.  When I was growing up, I had an uncle who lived in the same town. He had diabetes, but I didn’t know, because nobody ever talked about it. He always ate a little different than the rest of us. And then one day he couldn’t see well. Then he lost his sight completely, then a foot, then a leg.  Nobody ever talked about what it was! Only when I got older did I learn and realize…

When I had an opportunity to come to ADA, I looked at the size of this problem and where it’s going. I felt my talents could be best used here to help controlling this problem over time.

As CEO of ADA, you speak for diabetes now. What about the Paula Deen situation? In your opinion, what did it do for (or to) diabetes awareness?

At the time it seemed horrible, but it got diabetes and nutrition on the map for a short period of time. At the time I thought ‘Oh my God, how did we get here? Why did Novo do this? It doesn’t seem right. How can this person not care about what they’re eating and what they’re promoting?’ The message that got out there was, she’s not changing anything, and just letting a medication take care of the diabetes.

But when I look back on it, for 2-3 weeks it got diabetes in the public eye…

Has the ADA been in contact with her?

We have talked to her people. She is donating some of her profits to the organization, which she has every right to do. We’re working out the details on that.

The feeling has traditionally been that ADA focuses on type 2 diabetics.  Where’s the home for the adults with type 1?

We are trying to create a home, as I’m sure JDRF is. It’s been a gap in the system.

I wouldn’t say anyone ‘owns’ that space, but we are definitely looking at it. When we put materials out, we want to consider that audience. We’ve spent lot of time talking about what we can do and offer. We want to offer the right services, to identify what’s the best way to reach this audience with what they need — not just to say we did it.

What about the International Diabetes Federation (IDF) and the Blue Circle campaign? Why isn’t ADA supporting that more actively?

IDF is considered a partner. We have no objection to the Blue Circle, but it’s not the branding we’re using in this country. For World Diabetes Day, we use it of course. It’s just not the branding we think works in the USA.

My philosophy is everything doesn’t have to be ours – we can point people in the right direction.

Why don’t you think the Blue Circle works as a diabetes icon in America?

When we tested the idea of creating a very simple, color-based symbol, it only created awareness that it was diabetes. But people didn’t understand the disease or its potential seriousness. The reaction was, ‘If you told me more, I would care.’

We did focus groups two and a half years ago, before launching our Stop Diabetes movement. No matter what message we were testing, it kept coming back to: if people didn’t get the seriousness, they just didn’t care.  They would choose other causes to support, because they seemed more important to them.

If we asked,’On a scale of 1-10, how serious is cancer?’ They all said 10. If we asked about heart disease, they all said 8 or 9. Diabetes would get a 4 or 5.  But if we asked if they know someone who had it, they often said. ‘Yes, my brother.’ We’d ask how he’s doing, and they’d say, ‘Fine, since the amputation.’ It was so frustrating!

One man said his Dad died of a heart attack, so he was interested in supporting heart disease — but his Dad actually had diabetes, and heart disease was a complication!

So people reacted more strongly to your more ‘graphic’ symbol of a hand with a blood drop on it?

Yes, when we got to testing our Stop Diabetes message, people said, ‘Of course, I want to stop people from getting it, and stop them from moving to complications.’ It made them take one step forward into the circle.  It seemed to be the hook to get people to say, ‘This is important.’ They were now ready to have a conversation. It begun to have the impact of getting people emotionally involved.

We don’t  expect people to get up on the Academy Awards with this pin, but what it has done is get people to start understanding better the urgency of taking action on diabetes.

We certainly hope so, Larry. Although I CAN picture celebs at the Academy Awards donning a Blue Circle pin, if we could ever get Hollywood’s attention. In the meantime, let’s hope that the work of all these partner orgs together can make a difference!