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Carlo Allegri

Insulin prices are killing people. A single vial, which lasts some users between one and two weeks, is priced <a href="https://www.nytimes.com/2019/01/18/opinion/cost-insurance-diabetes-insulin.html">over $300</a> — roughly <a href="https://jamanetwork.com/journals/jama/fullarticle/2510902">triple what it cost in 2002</a>. <a href="https://www.nytimes.com/2018/06/22/well/diabetes-patients-at-risk-from-rising-insulin-prices.html">One in 4</a> diabetes patients have admitted to rationing the drug because of costs, and <a href="https://www.npr.org/sections/health-shots/2018/09/01/641615877/insulins-high-cost-leads-to-lethal-rationing">several</a> have died after doing so.

Much to the relief of <a href="https://www.npr.org/sections/health-shots/2018/11/28/671659349/we-re-fighting-for-our-lives-patients-protest-sky-high-insulin-prices">insulin affordability advocates</a>, who have been raising awareness about costs and pushing for <a href="https://www.reuters.com/article/us-usa-healthcare-drugpricing/congress-holds-first-hearings-on-insulin-high-drug-prices-idUSKCN1PN2WJ?fbclid=IwAR1P_K7t1dNDgae3apjMrK-6D1IdZ2UnwjKyJhKSvE8JmcynE91YLjc0w8Q">policy changes</a>, the public is increasingly aware of this crisis. But instead of working with advocates to rectify the situation, too many people are simply promoting older, cheaper insulin. This was evident in early February when a Facebook post touting “Walmart insulin” went viral. Such gestures come from a good place, but they put insulin-dependent people at greater risk and threaten to exacerbate the larger problem.

It started on Feb. 4, when a news station in Texas shared a <a href="https://www.snopes.com/fact-check/insulin-walmart-vial/">viewer’s letter</a> suggesting that struggling people should simply go to Walmart to purchase insulin without a prescription for $25. This viewer claimed that her husband buys three vials a month. The anchor admitted that he “can’t vouch for Linda” but told viewers, “Try it. Let me know if it works.”

Keeping my kids with diabetes alive costs thousands of dollars a year

A woman watching snapped a photo of her television and shared it on <a href="https://www.facebook.com/1436147156/posts/10219087726290825?sfns=mo">Facebook</a> with the comment, “I don’t use this but I hope it helps someone that does. Please talk with your Dr before making any changes in medications.” Within 24 hours, the post had 132,000 shares. It has since accumulated more than 12,000 comments, many of them tagging diabetics in the apparent hope of assisting those who are struggling with the cost of critical medications.

But many <a href="https://twitter.com/MsAllisonBailey/status/1093835895030104067">people with Type 1 diabetes</a> and their <a href="https://twitter.com/DocMcCookOKC/status/1093902103079276544">caregivers</a> (I am one of the latter) cringed as the post went viral. It wasn’t just comments like “Yes this is true. I get it for my dog” that irked us, but also that the advice signals a cavalier attitude toward diabetics’ health.

As those of us within the Type 1 diabetes community know, and as a subsequent <a href="https://www.snopes.com/fact-check/insulin-walmart-vial/">Snopes entry</a> clarified, “Walmart” insulin is an older form, one that few Type 1 diabetics use. The chain store sells short- and long-acting human insulin (commonly known as R and N), rather than short- and long-acting analog insulin, which is the variety that costs over $300 per vial. <a href="https://www.amjmed.com/article/S0002-9343(14)00585-3/pdf">Human insulin</a> was created in the 1970s to better imitate a human pancreas over the animal insulin that was initially used. While that might seem like a good thing, synthetic insulin poorly approximates the insulin secretion of a healthy pancreas. Among other things, it can take an hour to begin absorbing, while more recently developed rapid-acting analog insulin starts to take effect in 20 minutes or less after an injection.

This means that, like midcentury patients, people on the older formulary experience a blood sugar spike after eating — which can lead to long-term complications — or must dose well before eating. Doing that requires a level of planning that is not always feasible at home, let alone in <a href="https://medium.com/@julia.boss/jose-gomez-marquez-asks-so-why-cant-we-use-the-orange-one-older-insulins-85877819bb57">professional or educational settings</a>.

In 2016, Nicki Nichols <a href="https://insulinnation.com/treatment/why-walmart-insulins-arent-the-answer-to-high-insulin-prices/">blogged</a> about the challenges of this regimen with her young daughter. “Going out to dinner?” she wrote. “You must decide on your meal before you leave the house. If you’re hungry for a snack, you must bolus the insulin and then wait an hour.” To avoid life-threatening hypoglycemia (low blood glucose, which can lead to seizures and other complications), Nichols had to compel her 5-year-old to eat every carbohydrate on her plate, even if she was already full. She also had to make her daughter eat by herself an hour before the family meal when “her father wasn’t even home yet.”

Insulin is too expensive for many of my patients. It doesn't have to be.

Another disparity between human and analog insulin is the duration in the bloodstream. Older human insulin can linger up to eight hours after meals, which increases the risk of hypoglycemia, especially during sleep. Many who’ve used this insulin report seizures and losing consciousness from drops in blood sugar, as well as frequent <a href="https://www.npr.org/sections/health-shots/2015/12/14/459047328/you-can-buy-insulin-without-a-prescription-but-should-you">hospital visits</a>.

Despite all of this, proponents sometimes argue that financially struggling diabetics should use it for the simple reason that it will keep them alive. This claim is routinely lobbed by social media users who point to the family members of <a href="https://www.npr.org/sections/health-shots/2018/09/01/641615877/insulins-high-cost-leads-to-lethal-rationing">Alec Raeshawn Smith</a>, <a href="http://pensandneedles.org/chronic-illness-and-tragedy-turn-teen-into-pharma-fighting-advocate/">Antavia Lee Worsham</a>, <a href="https://www.desmoinesregister.com/story/opinion/editorials/2019/02/06/editorial-iowa-jesse-lutgen-loses-job-insurance-insulin-life/2748651002/">Justin Lutgen</a> and others who died after rationing analogues. Isn’t being “kept alive” a rather low threshold for outcomes?

The claim is also not necessarily true, as insulin advocate <a href="https://www.t1international.com/blog/2019/02/08/losing-meaghan-perfect-storm/">Mindi Patterson</a> knows well. Her sister-in-law died within days of transitioning to human insulin. In June 2018, Meaghan Carter lost her insurance and couldn’t afford to pay $900 a month for insulin. She managed to obtain the drug for a few months but then purchased a vial from Walmart in December. Carter did not have the physical or financial resources to succeed on human insulin. Having lived with diabetes for 18 years, she had developed high blood pressure and other heart problems, which may have left her poorly equipped to withstand the new regimen.

Carter also lacked an endocrinologist to supervise her and an adequate supply of test strips to monitor her glucose levels. According to Patterson, Carter was down to half a bottle of strips when she died, and her glucose meter revealed that she was testing her levels only once daily in the days leading up to her death. Even off-label test strips can cost 40 cents each, and some diabetics test 10 or more times a day. This figure can be even higher for someone adjusting to dosing changes. Such an expense can be prohibitive for those living on the edge of their means, which is supposedly the whole point of switching to human insulin.

Why prescription drug prices have skyrocketed

Yet there is something worse than seeing the public tout “Walmart” as a solution to high insulin costs: seeing the major diabetes organizations do so. Last year, the American Diabetes Association released a <a href="http://care.diabetesjournals.org/content/early/2018/05/03/dci18-0019">white paper</a> in which it advised physicians to prescribe older insulins in cases where the patient cannot afford analogues, though it allowed that taking such an approach would require “significant education” of both health-care providers and diabetics. In a newsletter issued this week, the Juvenile Diabetes Research Association also recommended older formularies to patients needing assistance with drug costs.

These suggestions give the lie to the organizations’ own calls for reduced insulin prices, confuse the public and distract from advocates’ efforts to reduce insulin prices. These calls are also alarming for the reason that the nonprofit T1International notes: They “[exacerbate] a two-tiered system where the rich get the ‘better insulin’ and the poor are forced to use the older, and often more problematic, insulin.” (Disclosure: I volunteer for T1International.)

Rather than telling the most vulnerable members of the community to seek outdated treatments, these organizations should pressure insulin manufacturers to lower list prices. Likewise, members of the public should support meaningful efforts to make insulin more affordable for all, perhaps including <a href="https://www.businessinsider.com/nevada-passes-insulin-drug-pricing-transparency-bill-2017-6">drug price transparency legislation</a>, <a href="https://www.reuters.com/article/us-minnesota-lawsuit-insulin/minnesota-accuses-insulin-makers-of-deceptive-drug-pricing-idUSKCN1MQ2OA">anti-competitive lawsuits</a>, <a href="https://www.reuters.com/article/us-usa-healthcare-drugpricing/sen-sanders-rep-cummings-introduce-bill-to-lower-us-drug-prices-idUSKCN1P416L">caps on drug prices</a>, and the <a href="https://www.statnews.com/pharmalot/2019/01/07/vermont-drug-prices-importation-canada/">removal of barriers to importation</a>. Calls to embrace human insulin, no matter how well-meaning, are only intensifying a problem that demands more sweeping solutions.

Correction: An earlier version of this article gave the wrong decade for the creation of human insulin.

Audrey Farley is writing a book about Ann Cooper Hewitt and the history of eugenics.