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Image courtesy of @t1dchick
  • Minnesota advocate Nicole Smith-Holt, who lost her son due to insulin rationing, was taken into custody after defying police orders about blocking traffic during a Sept. 14 insulin rally in Indianapolis.
  • Grassroots group T1International is organizing protest rallies and vigils for victims of the Insulin Pricing Crisis around the country.
  • T1International also held a dynamic workshop to teach patients how to be effective advocates with Pharma, lawmakers and more.
  • A new documentary film, "Pay or Die," will highlight the human cost of outrageous insulin prices in America.

Even before the candlelight vigil and rally protesting high insulin prices began, advocate Nicole Smith-Holt from Minnesota planned to break the law as an act of civil disobedience. She knew she would be confronted by police, and likely end up being taken into custody. 

That’s exactly what happened in front of the Eli Lilly headquarters in Indianapolis on Sept. 14, as Nicole gathered with more than 100 others in a protest over outrageously high insulin prices that have led to rationing and death – including the loss of her own son, 26-year-old Alec Raeshawn Smith, who passed away in June 2017.

Along with protest signs and chants, sharing of heart-breaking stories, song and prayer, and embraces by candlelight, a culminating moment came when Nicole found herself in police custody in the back of a squad car. This outcome was pre-planned and not a surprise because, Nicole says, a radical act was necessary to take the #insulin4all outcry to a new level.

“It seems like every true movement in history has included acts of civil disobedience… and it just brings more attention and light to the issue and seems to elevate it,” she says.

This was the third annual protest outside Lilly’s downtown HQ, bringing the largest crowd and for the first time featuring a night-time candlelight vigil where nine families’ stories were shared in recognition of all those lost in the D-Community as a result of America’s Insulin Pricing Crisis.

T1International, the UK-based grassroots non-profit behind the #insulin4all movement, also held a day-and-a-half workshop for advocates from across the country over the weekend in conjunction with this protest. 

 

The vigil and protest at Lilly

More than 100 came out for the protest itself, from the local Indy area but also from many other states that represented 19 of the T1International #insulin4all chapters across the USA.

This protest in front of Lilly is just the latest in a line of #insulin4all events aimed at raising awareness and putting public pressure on the Big Three insulin makers, Lilly, Novo and Sanofi – who play a key role in pricing this life-sustaining medication for people with diabetes.

For its part, Lilly didn’t comment directly on this latest protest but offered a general statement to media outlets referring to efforts on its financial assistance programs and the new half-priced insulin Lispro it launched in Spring 2019.

The statement noted: “People should not have to pay the full list price for their insulin, and Lilly has taken several actions to remove that barrier. But more needs to be done to fix the healthcare system, and public demonstrations are an important part of that process. We will continue to push for the right reforms that can improve the system for everyone using insulin.”

On Saturday, the protesters stayed at the Alexander Hotel about a half-mile from Lilly’s main HQ campus, and walked from the hotel down the street chanting until they reached the designated protest spot, a public street corner directly across the street from Lilly. The vigil that began after dark at 8 p.m. included chants, personal stories being read by families and friends of victims, songs, prayer, and a moment of silence – and many signs, with messages such as “Stop Price Gouging Us!”

The artistically talented advocate Mike Lawson (a former cartoonist here at DiabetesMine) had created some remarkable portraits of those who’ve died, and those were presented to the families at this Indy protest.

“That was all pretty emotional,” Nicole says. “Overall, the vigil was great, but it was hard to find that balance between needing to not just have the vigil, but raise awareness through the rally portion."

 

Sister Rallies and "Pay or Die" documentary

There were several other “sister rallies” held across the country in the two weeks prior to this big protest, organized by #insulin4all chapters in New York City, Washington D.C., Des Moines, IA, Salt, Lake Ciy, UT, and San Diego, CA – in front of insulin manufacturing buildings as well as state capitals.

Other efforts to raise awareness include the Caravan To Canada trips, including the well-publicized one in late July with Sen. Bernie Sanders, who took more than a dozen advocates and press along as one of his 2020 presidential campaign events. No doubt, there will be more demonstrations coming soon.

It was also interesting to learn that a new feature documentary film called Pay or Die is in the works on this #insulin4all movement and our D-Community’s stories related to it. Filmmaker Scott Ruderman, who lives with T1D himself, was on the scene filming the protest.

"The T1International  #Insulin4all Vigil deeply touched my heart," Ruderman told us. "It was the first time I personally came face-to-face with all of the mothers who lost their children due to rationing insulin in the last 3-4 years. Most of their children were around my age, so I kept envisioning my own mother at this event. Being a witness to this particular moment (Nicole's speaking in the street) made me realize that every single advocate who has crossed my lens over the course of this project has exhibited the sort of deep emotional strength and support that you rarely, if ever, encounter in life. To be able to share these moments with others gives me great hope for the future of all diabetics."

 

A planned "act of civil disobedience"

We spoke candidly with Nicole about her experience at the event, and her plans to get herself arrested. This was in fact her second time attending such a rally, after being part of one in September 2018.

“My act of civil disobedience… I had planned this prior,” Nicole told DiabetesMine, noting that she had asked T1International and the other family members of those who’ve died, ahead of time if it would be OK. “Everyone was pretty comfortable with it. We had even coordinated with the Indianapolis (Metropolitan) Police Department to let them know I’d be doing this, so they wouldn’t be taken by surprise. Everyone else was told... not to follow me, because the police weren’t ready for anything other than me being out there.”

Here's how it went down:

Toward the tail-end of the rally, the group sang "Amazing Grace" together on the darkened nighttime street corner. Then, T1International leader Elizabeth Rowley announced via loud speaker that Nicole would take "an action" of civil disobedience: entering the middle of the intersection and reciting the names of those who've died as a result of rationing insulin. Rowley specifically instructed the rest of the crowd to stay where they were, for their own as well as Nicole's safety.

Standing in the middle of the intersection, with Lilly HQ and the signature fountain in the background, Nicole recited the names of those who've died as a result of rationing insulin. The crowd responded to each name, echoing it in unison before Nicole shouted the next name. Police approached and asked her to move, and Nicole refused. They gave her a few more moments to finish reading the list of names, including her son Alec’s that she preceded with an emotional 'my baby.'

And that's when police stepped in. When she once again refused to move out of the street, they took her into custody.

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Image courtesy of T1International, the organization that's staging insulin vigils and protests around the country.

With Nicole’s hands pinned behind her back, two officers escorted her from the intersection to their patrol car as the crowd of ~100 individuals chanted "No justice, no peace!" There were no handcuffs, and Nicole tells us that she isn’t sure it can technically even be called “an arrest” because they didn’t take her to the station for booking and processing.

Live video of the event clearly shows how this pre-arranged act happened, with a handful of Indianapolis officers on the scene and the crowd watching from nearby.

Nicole says the police drove her to a nearby fast-food restaurant parking lot and let her go. They also gave her a formal civil citation with a $200 fine. Nicole says they've passed the case along to their attorney to handle, since she lives in Minnesota and getting back to Indy for court isn’t easy.

Nicole adds that she almost attempted “civil disobedience” at the 2018 protest, approaching the Lilly building and sign with the company’s name on it. But a company security officer stopped her and told her to leave that Pharma company’s private property, so she didn’t pursue it.

“At the time, I thought maybe I’m not ready for the backlash… so I’ll peacefully left,” she said. “This year I was more ready. I think it highlights the crisis. It shows Eli Lilly, Novo and Sanofi that we’re taking this fight seriously and that they shouldn’t underestimate us.”

Along with continuing her work with T1International and the #insulin4all movement, Nicole also says she’s personally committed to working with state and federal lawmakers in crafting legislation related to this topic. Those efforts include helping Minnesota pass a version of Kevin’s Law to ensure emergency prescription refills for insulin, co-chairing the Minnesota Task Force for lowering prescription drugs, and sitting on the Founders Council of the United States of Care, a nonpartisan organization committed to ensuring that every American has access to quality, affordable healthcare.

 

Dynamic workshop on diabetes advocacy

The day-and-a-half workshop led by T1International was devoted to advocacy efforts around insulin pricing and access. It included about 45 individuals from 19 of the group's chapters across the country, plus Rowley, who’s from the US but lives in the UK, and a few other board members who live outside of the United States. While the org has conducted similar workshops internationally, this was the largest and first here in the US.

The featured as a keynote speaker Gregg Gonsalves, a Yale School professor of both Medicine and Law who’s a longtime HIV/AIDS activist, and co-director of Yale's Global Health Justice Partnership. The agenda ranged from understanding the reasons for high insulin pricing, a “combating Pharma’s talking points” session, advocacy branding and media relations, working with lawmakers on legislation, and even self-care for advocates. 

It also included important discussions on inclusion and diversity within our patient community and advocacy initiatives, and how we can all do better in recognizing those who aren’t at the table or included in these efforts. One of the panels included T1International member advocates Kylene Dyana (@BlackDiabeticGirl) and Adeline (Lina) Umubyeyi alongside immigration rights advocate Dalila Gonzalez, and Sa’ra Skipper, an Indianapolis T1D who's been forced to ration insulin and has advocated on this issue over the past year.

“It was really remarkable,” says T1International’s US Advocacy Manager Allison Bailey, a longtime type 1 who lives in Iowa. “People felt so strongly about this that they traveled from across the country to be a part of it.”

The organization sees this recent event and the overall #insulin4all movement as a success, raising awareness and garnering more support throughout the country and globally. T1International's first US presence was the tri-state Kentucky/Ohio/Indiana chapter established in early 2018, and Bailey says their recent explosive growth brings them to 34 chapters currently. They've actually have had to stop accepting new chapters for the time being, because they're struggling to keep up with rapid growth on only limited resources and a small full-time staff. They hope to start welcoming new chapters ASAP, and Bailey believes that in 2020, they could possibly see a chapter in every state – especially important in a presidential election year, when healthcare is such a key topic. 

As to what’s next, Bailey says they’re exploring how to up the ante going forward. One possibility could be initiatives planned around World Diabetes Day on Nov. 14. We look forward to seeing what’s next.

We have said it before: These protests serve an important purpose in shining a spotlight on the Insulin Pricing Crisis. This goes along with other efforts by different organizations, leading to Congressional hearings and prompting state and federal legislation as well as pushing insurance companies to make changes in how they cover insulin. While planning and prompting an arrest may not be everyone’s flavor of advocacy, it certainly heightens public awareness and keeps up the pressure on Pharma, PBMs (Pharmacy Benefit Managers) and other authorities that have the power to make the necessary changes. Kudos to the dedicated advocates devoting their time and energy to this important cause.