On June 13, the New York Times published a video op-ed with a stark title: “We Either Buy Insulin or We Die.” The video explores the realities of life during the American insulin pricing crisis, and follows several desperate patients as they cross the border to Mexico or seek the black market to acquire affordable insulin. The video was a viral hit. Even as outcry over insulin pricing has reached something of a crescendo – the issue is now commonly referenced by national politicians, for example – many people are still only now learning how profoundly the national healthcare system can fail people with Type 1 diabetes, and that for many it is truly a life or death issue.
The video’s byline lists several creators, one of whom, Robin Cressman, linked her name not to a Twitter or Instagram page but rather to a website titled Liberate Insulin. This strikingly attractive, minimalist site has no social media components. It offers a handful of links instructing visitors on how to purchase insulin or diabetes supplies cheaply and without a prescription. And it describes those using these secondary avenues as revolutionaries, artists and saboteurs, working to free this lifesaving medicine from its occupation by the monopolistic pharmaceutical industry.
We wanted to find out Robin Cressman’s story.
It was three years ago that Robin Cressman first crossed the border to buy insulin. She had been diagnosed four years previous, at the age of 27, and after a move across the country and change of employment she found herself restricted to high-deductible insurance plans, first through the ACA and then through her husband’s employer: “the only other option was a higher deductible plan.”
“I was deep into credit card debt, and had no other choice but to keep putting my insulin and other supplies on credit cards. Naturally, I hate to say it, but my first instinct was that this was my fault. That I’m the problem. This is what it costs to be sick. This is what a burden on society and my family I am.”
Down to her last vial of Humalog, and loath to spend another $248 that she didn’t have, Robin went to Walmart to purchase vials of R and NPH, planning to switch to the older generation insulins when she ran out of her current supply. Serendipitously, that was when her friends invited her on a fun jaunt down from the Los Angeles area to Tijuana, Mexico.
“I said to my friends, you know what? I’m going to stop at a pharmacy, just to check it out, no big deal. I had no idea what to expect.”
Her research on purchasing insulin in Mexico yielded little success, mostly just “conflicting anecdotal reports,” few of them from tourists or day-trippers. What’s more, friends in the diabetes community that she asked seemed skeptical of the whole idea. But with few options, she decided to take the chance.
“It was just as easy as could be. I bought about a year’s worth of insulin, identical to my American insulin, for about 5% of what I would pay in the US. No prescription necessary, no doctor’s visit. I was just getting the supplies that I needed without any barriers whatsoever. I could not believe this was happening.”
The experience was so profoundly different from her experience with the American medical establishment, with its outrageous costs and byzantine insurance system, that she found herself “appalled” at the contrast, and suddenly motivated to do something about it. Robin had only recently begun eagerly connecting with other people with Type 1 diabetes, and had become aware of how serious the consequences of high prices could be.
“I was very fired up to share this experience. It was not long before that trip to Tijuana that I heard about Alec Raeshawn Smith, who passed away while rationing his insulin [his mother co-authored and is featured in the New York Times video]. I had heard about him and was like, what the hell is going on? Why are diabetics rationing their insulin? What is this, World War II? This is insane. This just thoroughly insulted my worldview.”
Robin was quick to share her experience and thoughts with her friends, but she hadn’t yet found her megaphone. That changed when an acquaintance in the diabetes online community, Elizabeth Rowley, suggested that she write down her thoughts. The resulting blog post quickly attracted attention. Her words went viral and became one of the catalyzing forces that has helped propel the insulin price crisis to a prominent place in the national debate.
Soon journalists came calling too. Perhaps the irony of an American forced to cross the border to Mexico in order to acquire her life-saving medicine – in the midst of unprecedented political mudslinging towards that nation, accompanying President Trump’s proposed border wall, fears about migrant caravans, and so on – was irresistible. Robin was featured on NBC Nightly News in January, and soon after that the New York Times helped her put together the video group op-ed.
In the meantime, looking for “a place to put this frustration and fear and fire,” Robin launched her website, Liberate Insulin.
“My goal was to help other people have that experience of buying insulin with zero hassle and zero barriers, so that they could go help other people have that experience as well. I just kept building it. What else can I do? What other ways can I express this outrage and disbelief?”
“I was getting so many messages, a whole lot of the same questions over and over again. There were days or even weeks where it became fulltime.”
In time, overwhelmed with the flood of responses, Robin closed her Instagram account. The Liberate Insulin website would serve as the answer to those questions, an information hub to help instruct people on how to buy insulin in Mexico or Canada, on Craigslist, or how to use the older-generation insulins available at Walmart.
The website is more than just a practical guide. In trim, aphoristic prose, it portrays these cost-saving and potentially even life-saving avenues as a form of civil disobedience and artistic expression. Those that circumvent the U.S. healthcare system, she believes, are on the creative vanguard, working to disrupt the way that Americans meekly consent to an unacceptable and extortionary system.
“People are very loyal to a system that is taking advantage of them. My instinct was that I needed to face this problem with creativity. We are backed into a corner here. They’ve got us into a stupid, makes-no-sense position, and guess what? This new idea is that insulin is under pharma occupation. It is owned and litigiously guarded by pharmaceutical companies. And our advocates are not calling them out. We need to take it back, one way or another.”
The website is elegant and concise, which both befits Robin’s artistic personality and allows her to step behind the message. Ultimately, she didn’t want to share too much of herself:
“I’m sort of a reluctant advocate. The problem is so personal to us, and it is so deeply infuriating, so deeply enraging and dehumanizing to be experiencing this. If I write too much about it, I get really angry.”
“It’s just very easy for me to get caught up in wanting to take care of everyone that I can.”
For more on the insulin pricing crisis see here.