An important conversation began in Arizona this past week, between ‘Big Insulin’ and the Diabetes Online Community (DOC), as representatives came together to talk about ways we can all collaborate to better help people with diabetes.

That is, pharma giant Novo Nordisk welcomed a small crew of diabetes advocates to attend the company’s inaugural DOC forum in Phoenix on April 1. We were pleased to join 10 colleagues from the DOC at this event, and there were others with D-experience in the room too, from Novo’s Chief Medical Officer Dr. Todd Hobbs who lives with type 1, to a number of employees who have siblings or spouses with T1D. All together, we counted over 350 years of T1 experience at the table during the welcome dinner on the first evening!

However, type 2 voices were noticeably absent — something many of us pointed out, and Novo recognized this and asked how we can help them do better in terms of being inclusive.

While other diabetes companies including Roche, Medtronic and Sanofi have held these types of events before, this was Novo’s first time ever hosting such a patient forum. Certainly none of us expected to see any world problems solved there, but I think we all appreciated that this opens up a line of communication between Novo and the broader Diabetes Community that’s been lacking in the past.

It definitely felt as though Novo has a genuine desire to hear from our D-Community in ways that it hasn’t before. And naturally, our D-Advocates group shared some frank opinions on various ways they might operate better.

The official title of this day-long forum was, “The Future Is Now: What’s Next for Diabetes Management.” While that sounds exciting, the truth is that these summits generally start with the host company talking about themselves, as was the case here. Novo began with a brief overview of its history and accomplishments over the years, and they weaved in product info on Tresiba, their new ultra long-lasting basal insulin and even announced a commercial website launch for Tresiba that very same day.

The broader topics we covered included: cost of insulin; the future of diabetes care and how far we’ve come; how the company shares important financial and peer-support info; and a group discussion and brainstorming on DOC interaction and how to reach more people in the D-Community.

Clearly, the very hot topic of soaring insulin prices was the big issue that everyone had on the mind going into this event, the “elephant in the room” that was trumpeting to be discussed.

And discuss it, we did.

“Insulin cost is obviously something we need to address, as an industry,” said Novo’s associate director of marketing Michael Bachner. Right!

Many of us shared our fears over being able to afford insulin, even though we live in the United States and enjoy many ‘First World privileges.’ We talked about the growing numbers of patients globally who don’t have access to insurance coverage or the resources that we do. On the one hand, we’re clamoring for faster and smarter insulin, yet we also worry about being able to afford those fancy new products once they’re available — especially if insurance won’t cover them.

Novo’s CMO Todd Hobbs (one of us PWDs) gets it, but he noted that we have a much more complex situation here in the United States than in Europe, where insulin costs one-sixth the U.S. price due to government-run health insurance.

In the U.S., the cost is mostly dependent on negotiations with payers, Novo execs said. While co-pays can soften the blow for PWDs, the new healthcare regime and high-deductible plans are making insulin cost a more acute and visible problem.

There was also discussion about the fact that it’s a delicate balance, in which no one wants to tip the scales away from investment in R&D and developing better insulins and medications.

Many of us echoed that we realize diabetes product development is a business, that the healthcare system here in the United States is a mess, and that insurers and payers have way more power in this price-setting game than many understand. We get that even Big Insulin’s profits aren’t a sure bet, but can wax and wane due to market forces. We understand that there are behind-the-scenes discussions happening between Pharma, payers, government, and organizations like JDRF and ADA to make improvements.

Still, this is a hugely emotional issue — because it remains an outrage that many people have to forsake their health or risk dying because of the inflated costs of this life-sustaining medicine.

For my part, I told the Novo folks that I hope they move beyond just saying “it’s complicated” and pointing fingers at other players. It’s just not right that at these advocacy events, the first words out of the company’s mouth are usually pride in their history of making meds that help people with diabetes. Yet in the next breath, when asked about the rising prices, they simply say, “It’s complicated and we can’t talk about it.”

We recently published a shout-out to Eli Lilly along the same lines: Stand up, Big Insulin, take the reigns and start initiating change.

It was good to see at least some Novo leaders recognizing the need, and willing to engage in the conversation directly with passionate PWDs about financial assistance and other support they might offer.

“We’re not going to save the world and decrease price of insulin tomorrow,” said Ambre Brown Morley, Senior Director of Product Communications and Patient Relations. “It’s a systematic problem. But we can discuss it and work on doing better. And if Pharma can’t do it, then we’ll support ADA and TCOYD and others who can.”

With that discussion on insulin cost, it became very clear that Novo wasn’t doing enough to promote the programs and resources it does offer PWDs — especially when several of us in the room scratched our heads and said we hadn’t heard about their patient assistance efforts.

For example, they offer co-pay savings cards but the company admits there isn’t a lot of awareness on these and they aren’t utilized much. In fact, you can download a voucher from Novo’s site and take it to the pharmacy to get medications for $25 or less per month, usually for about two years.

The company also offers what it calls Cornerstones4Care, a diabetes management and patient assistance program focused on blood sugar control, healthy eating, staying active and taking meds. You can sign up for a 12-week program that offers customized emails, and can also work with a health coach by phone up to three times a week for three months. That’s been up and running for about 8 months, Novo says, and the average call time with a CDE is about 25 minutes with questions ranging from how to use their insulin pens, to carb counting tips and exercise advice with insulin on board.

Sounds like great stuff! But why aren’t these resources more visible? We suggested that Novo make this easier to find on its website, possibly making it flash to catch immediate attention. And we suggested that at pharmacies, when a patient is picking up a Novo product, the clerk’s computer might flash with a little flag to notify them about money-saving options for patients in need.

We even wondered why the company’s product starter kits, often given out by doctors and diabetes educators at the time of diagnosis, aren’t packed with info on these cost-savings cards and other patient assistance programs.

Novo says it is already beginning to invest in programs with community pharmacies and third-party suppliers, to better communicate these patient assistance programs — including the pop-up notification for pharmacy computer screens.

We’re happy to hear that, and look forward to helping spread the word as needed.

There were two guest speakers on hand to address this event’s key theme of the evolution of D-management through the decades. The fabulous Gary Scheiner, a fellow type 1 and well-respected certified diabetes educator (CDE) and author, spoke compellingly on all that we’ve seen change in recent years, and our hopes for the future.

He spoke of the current explosion in diabetes technology, and how many really want to see newer glucose responsive insulin, and more Pharma collaboration and peer support as we move forward.

Dr. William Rowley came in as a “futurist” to talk about the economies of diabetes. Numbers are scary — we’ll see a 54% hike in rates of T2D in the next 15 years, even though the incidence of D has actually declined worldwide over the past five years. The CDC shows that only 6.8% of newly diagnosed PWDs with private health insurance are getting adequate diabetes self-management education. That’s possibly because doctors aren’t prescribing CDEs, or maybe many doctor’s offices have their own nurse practitioners so they believe a CDE isn’t needed. Or possibly it’s a cost issue (right!), as seeing a CDE often requires a higher co-pay than a primary care physician or even an endocrinologist who’s a “specialist.”

Rowley made an interesting point about how in the near future, patients will probably be offered a “bundled” program of of D-support and services instead of just seeing a doctor and getting a drug prescription. Telehealth and online peer support are keys to that. Nice!

We talked about the use of that loathed term, “patient compliance” and many of us echoed the concern that doctors seem to throw that word around even in one-on-one patient interactions. Rowley suggested what we all know to be true: that it would be more effective get a positive message like, “Congrats, you’ve done great and you’ve just added 5 years to your life! Now, we can keep working to do this even better…”

That would take out the blame, judgment, and sense of failure so many experience — and replace it with a sense of accomplishment and motivation to keep on.

Of course, the absence of anyone with T2D in the room was glaring at this point. We noted that we can’t speak for our D-peeps with T2D, but it seems that trying to create a blanket message or campaign that applies to everyone just isn’t the way to go, i.e. no more “one size fits all” diabetes care.

That above discussion brought us to the big theme of best practices for connecting with others in the D-Community,

We want Novo and other Pharma companies to engage and have two-way conversations rather than just promoting their wares. We expressed that we hope in the future, companies like Novo will tap into what’s already happening in the D-Community rather than re-creating the wheel from their own vision.

The issue of celeb spokespeople came up as well, in light of the recent news of both Dr. Phil and James Earl Jones joining with Pharma companies to promote products and talk about their own diabetes. Novo actually had one of the most embarrassing celebrity spokesfolks faux paus in recent history when it hired Southern cooking queen Paula Deen to promote its T2 drug Victoza, and then had to to cancel the deal after she made inappropriate comments.

Still, the company picked itself up and embraced type 1 IndyCar driver Charlie Kimball, promoting their long-acting insulin Levemir. Many at the summit expressed much more admiration for Charlie, who actually talks about his diabetes outside of Novo promotions and does well in engaging with the DOC and D-Community — especially at the summer Friends For Life conference where he regularly appears.

Often, these celeb D-peeps share their stories but it doesn’t feel “real.” We told Novo clearly how important authenticity is when trying to inspire and engage people with diabetes.

Why was this summit held in Phoenix, you ask? Well, Charlie Kimball was set to race in the Phoenix Grand Prix on April 2, so the idea was for us to have access to him and that event. This is the eighth year that Novo’s been sponsoring Charlie, and they are very proud of that relationship.

As it turned out, Charlie and Novo were unveiling a new look for Charlie’s #83 racecar that would have a black and green paint job promoting Novo’s Tresiba insulin. We had the privilege of getting back-stage passes, so to speak, for the Grand Prix. We got to see Charlie’s car and others in the pits, and then we had individual and group photos taken with Charlie and the #83 car on pit lane. Then, we were treated to a special viewing suite above the Phoenix International Raceway to watch the event live!

A huge thank you to Novo for this, along with (disclosure) paying for all attendees’ travel costs and a few meals. We were not asked to write anything, nor does the invitation influence our coverage here.

In short, we appreciate being invited to this first Novo summit.

Like other Big Pharma players, Novo as a company has made its share of mistakes and missteps over the years, like getting caught bribing doctors and pharmacists to push their insulins over competitors’ and even offering illegal kickbacks to the former government of Iraq.

But the diabetes care team that put this event together now, in 2016, came across as truly dedicated to listening and trying to engage more effectively with the Diabetes Community. That’s a definite bonus! We’re encouraged to know that these people — with their own personal ties to the D-world — are working within Novo and with us to make real improvements in the tools, care and support systems available to patients.

Therefore yes, we are happy to be part of this effort. In order to move forward, we as patients have to be willing to work with all the Powers That Be to raise our voices about what really matters.