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OTD Salutes Quinn Nystrom, the Patron Saint of Affordable Insulin

OnTrack Diabetes caught up with insulin affordability advocate, Quinn Nystrom as she was gearing up for her next bus trip to Canada with a powerful politician.

 

quinn nystrom with group in front of bus headed to canadaDespite being uninvited to speak at summer diabetes conferences(underwritten by pharmaceutical companies), Quinn Nystrom keeps working to raise awareness about the insulin affordability problem. "I'm on the right side of debate," says Quinn. (Photo courtesy Rachel Nystrom)

Quinn Nystrom's been on a roll. Literally.

The tireless insulin affordability advocate has been back and forth to Canada twice since early May and will be making that long journey again in a few days. This time she'll be traveling with a rather unusual companion who doesn't require insulin to stay alive. 

Senator Bernie Sanders Gets On Board

Political hotshot—and presidential hopeful—Bernie Sanders heard about the #CaravantoCanada movement and got in touch with Quinn after the first trip. "I was thrilled," says Quinn of the unexpected call. "Regardless of what people think of his politics, this is not a red or blue issue—it's a life or death issue. What I care about is making insulin affordable for everyone who needs it."

Traveling with this kind of political star power, Quinn admits, is great for the cause. "It's going to bring more attention MORE attention, and hopefully an end, to a problem that has already claimed too many lives," she says.

Leading up the democratic debates taking place in Detroit July 30th and 31st, Senator Sander's bus will make the 20-minute trip to an undisclosed pharmacy in Windsor, Ontario on Sunday (July 28, 2019).

Quinn plans to take advantage of her time with the veteran senator from Vermont to educate him about living with type 1 diabetes (by some estimates, the most expensive chronic condition in the country) and share her thoughts about how to solve the crisis ("No, Walmart insulin is not the solution!" Quinn cries passionately).

Once in Canada, the pair along with a group of about 20 others, will go through the process of buying insulin in Canada where it costs a lot less.

"At home in Minnesota my monthly supply of insulin is nearly $1,200 (3 vials at $320 each). In Canada the exact same medication costs $90 and no prescription is needed," Quinn explains.(The chart below shows the dramatic rise in cost from July 1996 to the present.)

 

chart showing the rising cost of insulinSince the 90s, the price of insulin has skyrocketed over 1,100%, despite the actual cost of producing a vial of insulin being less than $5, according to Quinn.

Insulin is cheaper in Canada mainly because the country has public health care, so the government negotiates pricing with drug companies directly and caps prices. "Here in the US  drug makers negotiate individually with private insurance companies and the uninsured pay list price. People with high deductible plans and Medicare patients end up paying list price, too, because of the donut hole and lack of transparency in our syste," Quinn explains. Approximately 7.5 million Americans rely on insulin which is supplied by primarily by three companies—Novo Nordisk, Sanofi and Eli Lilly—who all offer patient assistance programs.

A Matter of Life Or Death 

Simply put, without insulin people with type 1 diabetes will die. "Today, one in four Americans with type 1 diabetes are rationing their insulin because they can't afford it," says Quinn explaining the group's reason for taking these trips.

Friend and fellow insulin affordability-advocate Nicole Smith-Holt was on both bus trips. The second trip in June took place on the anniversary of her son's death. Alec Smith tragically died in 2017 from diabetic ketoacidosis (DKA) while rationing his insulin.

Prior to the trip, Nicole was a guest on the Diabetes Dish podcast where she shared the painful story of losing her 26-year-old son. Alec had recently lost his healthcare coverage and was trying to make his insulin last to his next payday. He was found unresponsive and alone in his apartment by his girlfriend.

Because of the media attention resulting from the first Caravan ("A real grassroots effort," Quinn explains. "Just 8 of us in 2 mini vans."), two advocacy groups—Health Care Voter and T1International—covered the costs of the second trip. "We were so grateful since we didn't want to add trip costs to anyone already struggling to buy insulin," Quinn says. The second trip was a larger group—30 people from six different states.

A Rough Start

But the second trip north was not without some unexpected drama. "The bus was in the wrong location and shortly after departing it completely broke down," Quinn says. When the group finally got on their way again they were 2 hours behind schedule. But even that didn't interfere with the media coverage. "We made stops in Madison, Wisconsin; outside of Chicago and in East Lansing, Michigan and there were reporters with microphones and cameras at each stop," Quinn recalls.

Quinn Nystrom answers questions from reporters"National media including PBS and CBS News traveled with us on our last Caravan to Canada (end of June)," says Quinn pictured here answering questions from reporters in Minneapolis. (Photo courtesy Rachel Nystrom)

Then there was the news that the local pharmacy they were headed to in Canada had not received the group's custom order. "When we reached Chicago I called the pharmacy to confirm that our order had arrived only to be told it hadn't come in and wouldn't be there until Tuesday! At that point it just seemed that anything that could have gone wrong did!"

Always resourceful, Quinn got to work calling other pharmacies. "We ended up going to Walmart—they had a large supply in stock and were happy to accommodate us."

Lots of Love in Canada

One of the highlights of the trip wasn't covered in the media. "Whereever we went we encountered supportive Canadians. They showed up and cheered us on and told us they were sorry for what was going on in America. That solidarity meant a lot to all of us."

Inspite of negative comments on Twitter suggesting Americans were contributing to a drug shortage in Canada, Quinn says no hostility was ever directed toward them. 

Quinn Nystrom leaving Walmart in Canada with insulin"One important thing that was unfortunately left out of the media coverage was the support shown to us by the Canadian people. It meant a lot to all of us," says Quinn Nystrom (Photo courtesy Rachel Nystrom)

Another important part of the trip was a planned visit to the Banting House National Historic Site—the birthplace of Sir Frederick Banting, one of the scientists involved in the discovery of insulin.

"According to the story, Dr. Banting woke up in the middle of the night and wrote down an idea that led to the discovery of insulin," Quinn says describing the emotional experience. "Before the discovery of insulin 100 years ago, a type 1 diabetes diagnosis was a death sentence. But today, thanksv insulin we get to live a life of hope and freedom. I felt so grateful to be born after Dr. Banting's discovery."

The irony, according to Quinn, is that Dr. Banting didn't want his name on the patent because he had no intention of profiting or becoming famous from insulin. "He sold the patent for one dollar because he believed that the life-saving power of insulin should be available to anyone in need of it."

Quinn's Emergency Supply of Insulin

Our interview is interrupted by a knock on the door. It was a young mother who had driven 45 minutes to Quinn's home to pick up 3 vials of insulin for her child. Through her advocacy work as chapter leader of Minnesota's Insulin4All, her Facebook page and tweeting regularly @Quinn Nystrom she has amassed a small but important supply of extra insulin to share with others in need and does so on a regular basis. 

"I get dozens of messages a day from people who've seen me on the news. They are so desperate they reach out to see if I can help. Tomorrow I'm meeting a teenager at the mall. She's out of insulin and has no where else to turn," Quinn says explaining that what's even crazier is in the state of Minnesota she could be arrested on misdemeanor charges because insulin is a drug and Quinn's not a clincial professional.

"Insulin is of no use to anyone that doesn't have diabetes so if they want to arrest me, come and get me," she says. "I believe I'm on the right side of this. It's a human right's issue. I'm helping to save someone's life."

Why Walmart's Insulin Isn't the Solution 

Some argue that the $25 insulin sold at Walmart is the solution to the affordability crisis, but what many fail to understand is that the Walmart insulin sold at that price is an inferior form of insulin that came onto the market in the 1970s. "The Walmart insulin is an older insulin that works differently in the body than the newer analogue insulins," Quinn explains adding that her dad, a pharmacist, has schooled her about this option.

"If you're desperate and there is no other option then sure get it in an emergency. But I want to caution anyone considering this. Walmart insulin shouldn't be used long term as it can lead to frequent and dangerous hypoglycemic (low blood sugar) reactions and if you do use it it's important to be regularly monitored by an endocrinologist or certified diabetes educator (CDE)."

As far as it being the answer to the insulin affordability crisis? "Absolutely not," says Quinn. "It's a band-aid."

Buying Insulin in Canada

Purchasing insulin in Canada is perfectly legal, says Quinn, but there are some rules. "Our government permits individuals with diabetes to purchase a 3-monthy supply of insulin for their personal use."

For more tips on buying insulin in Canada, Quinn recommends consulting the T1International tip sheet. Check it out here:

https://static.ontrackdiabetes.com/sites/default/files/pdf/Caravan-to-Canada-Talking-Points.pdf

"If you decide to make the trek, call ahead to confirm with the pharmacy in Canada that they have enough insulin to accommodate your request without hurting their supply," Quinn advises.

Not Just Big Pharma, Legislators Too

As for the future, Quinn plans to keep the pressure on and hopes joining forces with Senator Sanders will aid n putting an end to this crisis. "We need price caps, anti-gouging laws, patent reform and transparency from pharmaceutical companies," Quinn says and her message may finally be resonating...

On Monday, July 22, a bipartisan group of US Senators introduced legislation that could significantly lower the price of insulin if passed. Introduced by Sen. Jeanne Shaheen (D-NH) and co-sponsored by Senators Collins (R-ME), Carper (D-DE) and Cramer (R-ND)—members of the Senate Diabetes Caucus—The Insulin Price Reduction Act takes aim at the complex system of insulin pricing in the US. The goal is to cut prices by targeting and restricting the rebates that go to pharmacy benefit managers (PBMs). 

"You can help keep the pressure on elected officials by letting your state and Federal representatives know you support these important measures," Quinn says. "Wake up America—It's time to do the right thing!"

We agree!

 

 

Updated on: July 31, 2019
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