Insulin Pricing Protest Draws Passionate Crowd (Grim Reaper and Dr. Banting, Too!)

Insulin co-discoverer Dr. Frederick Banting made his way to a street corner in front of the Eli Lilly headquarters in Indianapolis this past weekend, to protest high insulin prices that have hit crisis status here in America.

OK, it wasn't actually Dr. Banting.

Longtime type 1 Jane Ware Barnes from northwest Indiana actually brought Dr. Banting -- or rather a homemade, plush fabric doll-version of him that hung on to her backpack. He wore a "Dr. Banting" namebadge and clutched an #insulin4all sign, demanding more reasonable insulin prices or else he wanted the original $3 patent from the 1920s back.

Other protesters had signs mirroring that sentiment as well -- such as "Drs. Banting and Best would be mortified!" And one protester living with diabetes himself was dressed up as the Grim Reaper, in a full black hooded robe and carrying a scythe to showcase how insulin is essential to life and unaffordable prices are literally killing people.

That was the scene across from the Eli Lilly HQ on Saturday, Sept. 9, as a few dozen protesters gathered to speak out on out-of-control insulin prices. People from came from Indiana and surrounding states, and as far as Georgia and Pennsylvania. There was a lot of emotion on display, but things stayed civil and it didn't get ugly -- a real concern these days, given the heightened contention in U.S. politics these days.

Despite a modest turnout, folks on hand that day were excitedly acknowledging that this in-person protest may very well be the most visible grassroots action of its kind on insulin prices to date, beyond various policy discussions at the national level. Of course, it's TBD as to just what impact this may have -- from pressuring Pharma companies to raising public awareness in a meaningful way that affects change.

But for those who came out to Lilly, the demonstration felt like a success.

"I felt like everyone attending really thought out of the box to achieve strong and compelling ways to get the message across," said Karyn Wofford from Georgia, a type 1 for 15 years. "The Banting doll was very symbolic and a fun way to prompt an important reminder that Frederick Banting helped invent insulin to save lives, not to become rich. We know he only received $1 from the $3 that purchased the original insulin patent. So I thought the doll was a super-creative and lighthearted way to drive home such a meaningful message!"

As reported earlier, I was on hand to participate in the protest (wearing my personal D-advocacy hat as someone with T1D for 30+ years), and had actually offered some help in organizing this event put together by T1International, the grassroots group based in the UK that created the #insulin4all rally cry in 2014. That org teamed up with the Indy-based nonprofit People of Faith for Access to Medicine and other activist groups to mobilize people on the street.

I actually drove back from Michigan to Indy where I lived for more than a decade, to be one of three speakers sharing my own story and urging those in the general public to take notice and care about this issue. (A live stream recording of the protest is now on YouTube.)

Listen Up, Pharma

The official 'main asks' to Eli Lilly as a powerhouse insulin provider were:

  1. Transparency, overall in the cost of the insulin business.
  2. R&D transparency on the cost of making a vial of insulin.
  3. Lowering Prices (duh).

In my mind, the core messages are:

You can do better, Lilly and Big Insulin.

Transparency is key. Without it, we can't understand the problem and figure out ways to adequately address it.

While we know that drug pricing overall is very complex -- and that Pharmacy Benefit Managers (PBMs) and Payors also play a role -- the drug manufacturers are key, and they need to step up more than they have to influence change that does right by patients.

A handful of media outlets were on the scene, and several covered the event ahead of time as well as following the protest. Particularly noteworthy was that both of the largest and most widely-read newspapers in that area, the Indy Star and Indianapolis Business Journal, both published front-page articles. In fact, the Star story featured a quote from Yours Truly and ended up in USA Today and other newspapers nationally thanks to parent company Gannet's ownership. Woot!

And of course, that's what a protest like this was all about.

It was not about reaching those inside Lilly, at least not directly on the day-of... but rather about increasing public awareness. From the amount of media coverage locally and nationally, it does appear to be successful.

Indiana D-Mom and advocate Meri Schumacher-Jackson, who has three boys with T1D and blogs at Our Diabetic Life, at first had concerns about this protest but says she's glad it happened and that she was a part of it.

"I wasn't sure initially about the idea of protesting, but knew that I needed to start walking the walk instead of just talking the talk," she says. "Even if my impact was small, I made a difference just by showing up. We need to make our voices heard and the only way that is going to happen is if we use those voices. We can't underestimate our actions anymore. Change is a positive thing no matter how small. I'm glad I showed up Saturday and was able to rub shoulders with people who understand our heartache. A 14-year-old girl with type 1 asked if she could hug me at the end of the rally... it was worth the trip just for that."

A day before the Lilly protest, in a related "online day of action," dozens of diabetes advocate were encouraged to take to Twitter and other social media channels, and pick up phones or write emails and letters, to call on their state and federal lawmakers to take action on insulin pricing.

Official Responses

Eli Lilly leaders were not on the scene Saturday, but did offer a response to the protest.

“We are pleased that people in the diabetes community are engaged in this issue and demonstrations are one way to do so," according to a company statement published in a story on Indy's local TV station WRTV. "It will take continued effort across the healthcare system to affect real change and Lilly is committed to working with others to make it happen. This topic sparks a passionate response from people who are affected and we are committed to finding solutions. Lilly has been an active participant in the insulin access dialogue for a long time, and that work will continue."

The Pharma giant also pointed to its programs and Patient Assistance initiatives in the past year to help, though admittedly -- and Lilly has specifically acknowledged -- those are largely band-aids that are able to aid only a subset, but often don't go far enough and are not large-scale solutions to the underlying issue.

While the American Diabetes Association and JDRF advocacy orgs were not part of this weekend protest, they have both been actively working on the issue and did offer general support on "seeing more people engaged" in general.

"That's not in our approach to the problem," ADA Chief Medical and Science Officer Dr. William Cefalu said, about the protests. "We're trying to involve all stakeholders through our working group. We do encourage individuals and our advocates to speak to elected officials about their concerns, but as to the specific demonstration, we (were) not a participant." 

Both orgs have encouraged transparency from the insulin manufacturers, along with other players in the process. The JDRF has a multi-pronged approach and points out it has urged insulin manufacturers to foster more transparency and step up more than they have. The ADA has done the same on its own, working to "make insulin affordable" on the national front.

What's Next?

The other two big insulin makers, Novo and Sanofi, are next on the radar, with groups planning similar protests at the two company's U.S. headquarters in New Jersey -- possibly even on the same day, given they're only roughly an hour apart from each other. All of that's TBD, depending on logistics and timing.

T1International founder Elizabeth Rowley (who lives in the UK) says there haven't been any final decisions yet, but one idea being floated is to possibly target World Day Diabetes on Nov. 14, for symbolic purposes as Dr. Banting's birthday as well as the anniversary of when #insulin4all came to life.

Short of anything official, there's continued interest in strengthening online advocacy and raising the collective DOC voice in calling out high insulin prices to the powers-that-be.

It's also encouraging to hear Rowley say that her group is open to discussing this issue directly with Pharma as well as the ADA and JDRF, to potentially multiply impact.

Clearly, fixing pricing and access issues is not trivial; it's more like a strategic chess game than simple checkers.

But working together, all of us -- those living with diabetes, advocacy orgs, industry, and lawmakers -- can make a difference as we approach the 100-year anniversary of the miraculous discovery of insulin in 1921.

We owe that to Dr. Banting, and to all of the human beings worldwide who cannot survive without insulin.

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Originally published at DiabetesMine


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