Why patients are resorting to social media for insulin—and how doctors can help

By Jules Murtha | Fact-checked by Barbara Bekiesz
Published April 12, 2022

Key Takeaways

  • From 2002 to 2013, the per-millimeter price of insulin shot up from $4.34 to $12.92—a nearly 200% increase.

  • Sky-high insulin prices are driving patients—including those with health insurance—to rely on mutual aid organizations via social media for affordable insulin.

  • Physicians can better serve patients by pursuing training to use lower-cost human insulins, and by consulting patients' benefit plans in order to provide them with prescriptions for the lowest-cost insulins.

Perhaps you’ve seen the hashtag #insulin4all on Twitter. If you scanned through its tweets, you likely uncovered a sea of patients requesting and offering insulin supplies—a mutual-aid network for people with diabetes.

Patients are resorting to social media for insulin because they can’t afford to fill their prescriptions within the existing healthcare system. To make sure that people who need insulin can get it, physicians need to learn how to safely transition patients to lower-cost insulin.

Sky-high insulin prices

Patients have struggled to pay for insulin for several years. 

The per-milliliter insulin price jumped nearly 200% between 2002 and 2013, starting at $4.34 and landing on $12.92, according to an article published by the AMA.[]

"It is shocking and unconscionable that our patients struggle to secure a basic medicine like insulin."

William A. McDade, MD, PhD

As a result, the AMA urged the Federal Trade Commission and Justice Department to introduce enforcements regarding insulin prices and market competition.

 AMA Board Member William A. McDade, MD, PhD, expressed his outrage at the situation. 

“It is shocking and unconscionable that our patients struggle to secure a basic medicine like insulin,” McDade said. “The federal government needs to step in and help make sure patients aren’t being exploited with exorbitant costs. The AMA also plans to educate physicians and policymakers on ways to tackle this problem, and transparency from manufacturers and PBMs is a good place to start.”

Despite his call to action in 2018, insulin has almost tripled in cost over the last decade.

With just one vial retailing for about $300 according to StatNews.com, many patients are abandoning prescriptions and turning to what they regard as a more reliable place to access cheaper insulin: The internet.

Internet distribution

Facebook and Twitter are web destinations that patients flock to for insulin, as noted by Alina Bills, writing for StatNews in an article about her experience with online mutual-aid networks for insulin.[]

At one point, she needed an extra vial of insulin to tide her over, but Bills realized she couldn’t afford its $371 price tag, even with insurance. She reached out via Twitter, and someone sent her the insulin. Now, she stockpiles insulin when she can, to give it, in return, to those who can’t afford it.

“Once my insurance hits my out-of-pocket max, I store away extra insulin to ensure I have enough for any emergencies and to give to others who may need it,” Bills wrote. “It’s something people with diabetes do to help one another, because the healthcare system certainly doesn’t.”

While online aid groups have certainly helped patients manage their diabetes, it’s still risky to attain drugs such as insulin online.

Related: How to be a strong female leader in medicine

Online pharmacies

A study published by the Journal of Medical Internet Research looked at accessibility of Humalog and NovoLog insulin in 49 online pharmacies, as well as safety measures taken by these companies.[]

The researchers found that 59% of online pharmacies were illegitimate. Only 14% were considered legitimate, and 27% were unclassified. 

Among illegitimate online pharmacies, 57% didn’t require a prescription from consumers, 43% didn’t disclose medication information and warnings, and just 21% offered access to a pharmacist. 

Insulin was definitely cheaper at the illegitimate online pharmacies vs legitimate online establishments and brick-and-mortar pharmacies, but patients are at risk from substandard quality of insulin and poor pharmacy services, possibly affecting their diabetes control and the occurrence of adverse events.

How to increase access

Improving insulin affordability and increased access to this medication requires a coordinated effort involving multiple stakeholders in the diabetes healthcare arena. 

The Endocrine Society’s position statement on the subject cites policymakers, manufacturers, pharmacists, employers, and providers as all playing a part in increasing insulin affordability.[]

Physicians and other healthcare providers can take two actionable steps to expand patients’ access to lower-cost insulin:

  • Learn how to use lower-cost insulin. The Endocrine Society charges physicians and hospital administrators with the responsibility to train care providers in how to safely introduce lower-cost insulins, such as NPH and regular, to patients’ diabetes regimens. The Society believes that these insulins should be completely free to patients. The crucial point here, according to an article published by MedicalEconomics.com, is that training is necessary to avoid poor health outcomes when switching patients’ insulin.[]

  • Base the prescription on real-time benefit information. If patients are struggling to obtain insulin they can afford, The Endocrine Society suggests that doctors and other healthcare providers obtain access to patients’ real-time benefit information. Physicians can then prescribe the lowest-cost insulin to patients, whenever clinically appropriate, and permit them to receive treatment that would otherwise be prohibitively expensive.

What this means for you

The cost of insulin is too high for many patients to access it through their providers. To acquire their medication without breaking the bank, patients are linking up on social media mutual-aid networks to send and receive insulin and other materials. They also order through online pharmacies, but not all of these are legitimate, and their product quality and services may be questionable. 

The healthcare system needs to take a multi-pronged approach to address this problem. In the meantime, physicians can increase insulin affordability by getting proper training to safely switch patients to lower-cost human insulins.

Read Next: Update: Elucidating the link between diabetes and dementia

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