I have a confession to make. For the past couple of years, I’ve been involved in a drug trade.
I trade insulin.
It all started in 2019. Well, I take that back. It all started in 1966, when I was diagnosed with juvenile diabetes (now referred to as Type 1 diabetes). I’ve been injecting insulin ever since. Early on, Flo, my mom, was my supplier. They knew us at the local Rexall drug store: I’d walk with her there every month, she’d plunk two dollar bills on the counter, and they’d hand her a vial of “regular” insulin along with two cents change. In my college years, the university health system supplied insulin free-of-charge. After graduation I narrowed my job search to employers who provided good health insurance. The cost of insulin rose slowly over the years, but with health insurance, I was only asked to pay $30 per vial.
Until that one day last year when now-retired Seeing Eye dog Whitney led me to our local Walgreens. Our mission? Replenish my dwindling supply of short-acting insulin (the kind you inject every time you have a meal or a snack). I’d ordered three vials. “Okay, that’ll be $939,” The pharmacist said as he slid them my way.
You can imagine my reaction. I had a credit card, but I knew not to use it. You can’t return prescriptions you’ve paid for. The pharmacist suggested I contact my insurance company when I get home. I did. “We can straighten that out for you,” the woman at the insurance company told me. “But it might take a couple weeks.”
A couple weeks? I only had enough to get me through the next three days!
So I called a friend who takes insulin. He had extra, met me in our neighborhood park, and handed me a bag to get me through. .
Things got worse in 2020. Not for me, but for other diabetics I know. One of them was a server at a local restaurant/bar we go to. The place had to cut back on staff due to COVID, he didn’t have health insurance, and I got word he was having a hard time affording his long-acting insulin. I had extra long-acting insulin at home. Pay it forward, right? After rubber-banding my extra vials together, I set up a meeting time and slipped the contraband to the young man in need.
A Side Effects Public Media story I heard on the radio last week explains the high cost of insulin like this:
Drug companies have largely thwarted creating generic versions of insulins — which could dramatically reduce the price — by renewing drug patents. Drug companies say this is needed to defray the cost of development, while critics say it’s designed to maintain high profit margins.
An interview the Side Effects reporters had with Travis Paulson, who has Type 1 diabetes, brought up something that hadn’t occurred to me before. Unable to find work with health insurance during the 2008 housing crisis, Paulson often rationed his insulin supply — a risky practice that can be fatal — to make ends meet. As finances dwindled, he started traveling 90 miles away from home to cross the border into Canada to buy insulin. “I found out that I could get insulin up there for about $25 a bottle,” he told the reporters. “The same insulin costs $350 to $400 a bottle here.”
But then COVID-19 hit. Canada closed its border with the U.S. It’s been nine months since Paulson has been able to cross into Canada to buy insulin. “So that was unsettling,” he told the reporters. “It not only cut me down on insulin, but it cut down on anybody I could assist with insulin, too.” You read that right. Travis Paulson has been involved in drug trafficking, too.
The Canada – U.S. border is still closed, but the Side Effects story reports Paulson recently found a pharmacy in Vancouver where he can place large orders for insulin to be shipped his way. “Otherwise, yeah, I’d be seriously hurting right now,” he said.
Three pharmaceutical companies supply the U.S. with insulin: Eli Lilly, Sanofi and Novo Nordisk. Each offers financial help with insulin costs, but you have to register individually with the companies to qualify. A 2019 Washington Post story quoted a spokesperson for the Pharmaceutical Research and Manufacturers of America saying that “Too often, these negotiated discounts and rebates are not shared with patients, resulting in the sickest patients paying higher out-of-pocket costs to subsidize the healthy.” Isn’t this the opposite of how health insurance is supposed to work?
I can tell you firsthand that despite what the outgoing president said in a September 2020 presidential debate, whether you are insured or not, insulin is still more expensive than water. I’m holding out hope for 2021, though. Happy New Year!
This just in: the January 1, 2021 edition of the Chicago Tribune reports that a Illinois law took affect on New Year’s Day (January 1, 2021) making our state one of the first states to limit the out-of-pocket price of insulin. The Tribune reported that the cost will be limited to $100 for a 30-day supply. Still not cheaper than water, but getting closer.
Beth, thanks for sharing this information.
So many forms of corporate greed out there. Obviously Canadian drug companies are making money at $25.
Nice to hear about the support network to help.
Oh, Diana, thanks for bringing this up. I was going to mention it in the blog post, but I’d already hit my word limit there.
The washington Post story quoted a bigshot with the Canadian Pharmacists Association saying insulin prices in Canada are controlled through policy, including price caps and negotiations with manufacturers.
“This is something the U.S. could do,” he said.
Let’s hope.
Happy New Year. I appreciate the insight you provide and enjoy reading your blog.
Thanks for your kind words, Nancy. they keep us encouraged to continue writing.
Thanks for sharing this Beth. Having worked as a nurse for many years, I’ve long been aware of the greed and unscrupulous policies of pharmaceutical companies. This info needs to be publicized widely. People with mental illness often suffer due to large, sudden, unexplained price increases in medication they depend on and pharm industry planned shortages of critical drugs. The pharmaceutical companies control legislators through campaign donations, so there is never any mitigation. Great to hear about grass roots efforts of ordinary people helping each other survive.
So dangerous and heartbreaking! All this so the bigwigs in drug companies can buy many more flashy cars, yachts and private airplanes! It’s a matter of life and death, and THEY DON’T CARE!
Very enlightening Beth! Obviously, the price we pay for drugs has nothing to do with the actual cost of those drugs. It is an artificial system that includes many other factors, which I don’t understand too well. We need a rational system to pay for health care, and, just as for education, everyone should have basic coverage assured without having to go into “illicit trade”, as you described so well. Thank you!
You are welcome, José. You must have seen a lot of this in your career as an MD. Thank you for weighing in here — you give me cred!
This is maddening. And what I discussed every time I gave a speech when running for office. I’m happy to say I am now on now the Legislative Team for JDRF and on various Health committees with my new position, in order to get this message across. We are horrified that people have to ration their insulin and/or go broke affording it. So much is wrong about this. When our son was diagnosed with Type 1 Diabetes (T1D) last year, our eyes were opened to this, very quickly. I’m going to share your essay far and wide.
Happy New Year, my friend.
Looks like your efforts are already working, Lynn: a story in Yesterday’s Chicago Tribune reports that a Illinois law that took affect yesterday makes our state one of the first states to limit the out-of-pocket price of insulin. The Tribune reports that the cost will be limited to $100 for a 30-day supply. Still more work to do, but a great first step. Thank you.
Yikes. The intrigue! You’re brave to write this. I’ve been watching and reading a lot of police procedurals lately (like the rest of the world). Any deviation from the “law” spooks me. Last year my blood pressure medication skyrocketed to $290 (with Medicare Part D insurance) for 60 pills at Walgreen’s. I started ordering from Honeybee Health https://honeybeehealth.com, and now pay $7 (no insurance). Honeybee doesn’t have insulin (yet), but it has my 3 common medications. It’s infuriating we have to go off the beaten path to take care of our health, and in your case, to save your life.
And blood pressure medication saves your life, too, Regan. Same goes for Cynthia’s comment above, reporting that people with mental health issues who can’t afford medicine can find themselves in dire situations (she is a nurse working in the mental health field). It did occur to me that I might be opening myself up to investigations from federal agencies or something for writing this. It is for that reason I was careful not to give names or specific descriptions of others involved . My hope is that the FDA is so busy with other issues right now (can you say, “vaccines?”) to bother with a woman of a certain age who needs insulin. And then there’s this: I did not benefit financially from any of my doings here.
This is so infuriating. Thanks for writing about this. Another thing America got wrong while other countries were able to get it right. I hope your article helps change this.
Me, too. Having Lynn LaPlante (above) on our side will help. She won an Illinois election this past November. Wait one second and I will look up her new title.
She’s the DuPage County Board Chairman!
THIS MAKES ME SO ANGRY…FURIOUS, IN FACT. That business with the patents is sickening. The only so-called civilized country that pulls this on its citizens. It’s enough to make you a Socialist. Oh, wait. I AM a Socialist.
Great article, Beth, you drug smuggling rebel, you! I don’t know if you remember me, but I wrote an article about your visit to my daughter’s school in NY in 2014 and I’ve been following you ever since. This article struck a chord with me, as I work in a Clinical Trials Lab. So my customers are these Pharma Companies. I’ve worked with so many amazing individuals in this industry, whose hearts and minds are in the right place…so many get into this line of work to bring life-saving drugs to market and improve patients’ quality of life, for sure. But clearly, something happens between that person’s seat and that of the CEOs of these corporations, where stockholders and greedy boards send the message that the almighty dollar is the most important bottom line. And that saddens me, especially for all of the incredible work that is done at lower levels within these organizations. We are working with so many companies right now, that are trying to bring COVID cures and vaccines to reality, and I can’t adequately express the tireless efforts that so many individuals are putting forth in order to achieve this. So it’s disheartening to think forward and just know that some of these treatments will not be available to some who may not have access to health care in the U.S., just because of policies, red tape and greed. Thank you for hitting the hard topics along with the delightful ones. Happy New Year, Beth. I’ll still respect you, even if you have been engaging in illicit drug trades!! 🙂
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