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Insulin: Death by Cost, not Diabetes
Faced with the impossible decision between paying her rent or affording $300 for insulin, Jada Renee Louis chose shelter over her medication—a choice that ultimately cost her life (“High Insulin Costs are Killing Americans”). Jada is one of 14 people listed on the Right Care Alliance webpage who have tragically lost their lives due to insulin rationing. After a 2021 survey conducted by the CDC, researchers concluded that over 1 million Americans rationed insulin that year due to its high price (Gaffney et al. 1624). In the United States, insulin costs roughly $80-300 per vial or $200-700 per carton of pens (McQueen and Li). For some, these drastic prices can total up to a devastating $1000 per month without the right insurance (Pfiester et al. 5). Costs have drastically risen to this point due to the pharmaceutical supply chain, where each link takes a profit-maximizing approach to insulin distribution. Instead of saving those suffering from diabetes, the production of insulin caters to the pockets of pharmaceutical companies, prioritizing the livelihood of monopolies rather than their patients.
The scientists who invented insulin therapy intended on making the medicine accessible to all. Without insulin medication, patients with diabetes are unable to produce their own insulin, a molecule necessary to maintain healthy blood sugar levels and use glucose as energy. When there is not enough insulin in the body, one can experience ketoacidosis, which is an illness that eats away at fat stores, resulting in death if untreated. Motivated by young friends and family who passed away from these symptoms, scientists Frederick Banting, Charles Best, and James Collip came together to create the first successful insulin models in the 1920s. They sold their patents for a mere $1 each, believing “anyone would be free to prepare the extract, but no one could secure a profitable monopoly” (Lewis and Brubaker 7). With the patents being so cheap, insulin should be affordable to all patients with diabetes. Unfortunately, the founding scientists’ passion for the welfare of the people is an idea lost in today’s era.
It’s difficult to grasp why a life-saving medication developed over a century ago remains so expensive. Diabetes medicine has greatly advanced since the 20s, but that does not mean the price must increase as well. In recent years, insulin therapies have taken a variety of forms from long or short-acting formulas to alternative delivery methods like pens or patches. The newer methods are especially pricey—roughly double the monthly cost of vials—but patients prefer them because of their less invasive nature (Peyrot et al. 287; McQueen and Li). While these developments took time, money, and research, effective insulin treatments could still be produced at a lower cost. Biosimilars are one of the newest forms of insulin—and are actually the cheapest producible version to date. Even when including a 20% profit margin for manufacturers, patients who use syringes to deliver biosimilar insulin should truly only pay a maximum of $133 per year, and patients using a long-acting insulin like detemir would only pay up to $365 per year (Gotham et al. 1). These prices are nearly 12 times lower than what some diabetic patients currently pay per month. If advanced insulin production is even cheaper to produce, this raises further concern for how exactly the current costs came about.
The hope for universal insulin access quickly faded when insulin production became commercialized. Because insulin could not be produced in high enough quantities at the small lab the original scientists worked in, the pharmaceutical company Eli Lilly took over insulin production, but it also took full control over the patents (Lewis and Brubaker 4). Companies Eli Lilly, Novo Nordisk, and Sanofi now dominate 96% of insulin production (Gotham et al 1). These companies use a variety of methods to raise and justify high insulin prices such as research and development (R&D). While R&D can produce genuinely innovative drug forms like biosimilars, manufacturers use patent control to hide those solutions and replace them with the creation of profit-maximizing “me-too drugs.” Instead of using the newer insulin, manufacturers take old, functional drug patents that companies purchase and make miniscule “improvements” to so they can re-patent the medication and raise its cost (Shmerling; Aronson and Green 1). Even though pharmaceutical companies are constantly pumping out these new drugs, researchers have proof that the cost of R&D is not nearly enough to justify the high cost of drugs. Analyses suggest that companies actually make more revenue with increased R&D investments (Wouters et al. 1). These gains allow manufacturers to buy out nearly all existing insulin patents, effectively monopolizing insulin production and de-incentivizing the production of new, cheaper biosimilars (Herman and Kuo). This profit-maximizing approach contrasts the original inventors’ optimistic vision. The cheaply sold patents were not enough to discourage insulin’s monopolization; they enabled it. Ethical concerns only deepen further down the supply chain, worsening barriers to insulin access for the people who need it most.
Recent protest has driven Eli Lilly and the U.S. government to work on lowering the list price of insulin. However, pharmaceutical companies are only half the answer. Around 42 cents of each dollar that is spent on a name-brand drug goes to the supply chain middlemen known as pharmacy benefit managers (PBMs) (Ubl). PBMs are large, shrouded corporations hired by insurance companies to negotiate with pharmacies and pharmaceutical manufacturers and lower the price of drugs. Instead, PBMs increase costs by billing insurance companies far more than the price that’s set by manufacturers (“PBM Basics”). These price hikes include the PBMs’ rebates and fees, which are based off the cost of a drug, meaning that PBMs are incentivized to keep drug costs high to maximize their own profit (Ubl). What is particularly alarming is that PBMs disproportionately burden those struggling the most to afford their life-saving treatment. PBMs focus their business on people who have Medicaid or Medicare Part D, which is government health insurance intended for low-income individuals (Qato 1298). Efforts to decrease insulin prices will need to target PBMs. Fortunately, just this fall, the United States Federal Trade Commission sued some of the largest PBMs for “unfair practices that inflated the price of insulin” such as targeting vulnerable patients (“FTC Sues Prescription Drug Middlemen”). Taking legal action against these companies may have a positive impact on future insulin costs, but it cannot undo past decades of suffering. Despite frequent protests by a variety of organizations like the Right Care Alliance and the Human Rights Watch, the FTC has only started addressing the insulin crisis in the past year or so. If Americans are dying from not being able to afford the costs of an easily treatable disease, why has the government not gotten involved sooner?
Author of Living with Sugar, Amy Moran-Thomas claims there is a “lack of international interest” due to diabetes being a stigmatized illness and disproportionate funding towards health issues (Moran-Thomas 294). While diabetes takes two forms (Type 1 and Type 2), both are often equated. Type 2 diabetes (T2D) is the most heavily judged, because its onset comes later in life and could be caused by obesity or lack of physical activity, while people with Type 1 diabetes (T1D) are born without the ability to produce insulin. Many people overlook the fact that T2D can also be affected by uncontrollable factors like genetics and how one is raised (Daniels). Even if someone did develop T2D because of obesity, it doesn’t mean they do not deserve access to life-saving medicine. Being uninformed on these biases greatly reduces the strength of protests and activism for diabetes. Many people believe the U.S. can solve the rising numbers of diabetes cases through solving obesity, but what we really need is affordable treatment.
Donations made to health organizations greatly impact patient outcomes through funding care for those in need. However, donors do not spread the wealth equally. For example, the rise of HIV/AIDS prevention in the 2000s was extremely well funded, but it left out funding for other under-represented illnesses (Shiffman 95). Despite HIV/AIDs being possibly the most stigmatized health issue globally, it received $43 billion in federal funding in 2022 alone, compared to $3.39 billion towards diabetes over 26 years (“U.S. Federal Funding;” “About the Special Diabetes Program”). One of the most crucial events supporting HIV/AIDs prevention was the U.S. President’s Emergency Plan for AIDs Relief (PEPFAR), where the United States recognized AIDs as an epidemic, and billions of dollars went into the research and response for the disease. Because of this funding, there is a vaccine available to nearly all adolescents to prevent HIV from developing later in life. While diabetes was declared to be an epidemic in 1994, the crisis remains without a vaccine, with patients still suffering from high costs and insulin inaccessibility (Williams). When it comes to these health issues, stereotyping must be challenged with research and awareness. Breaking down the stigma surrounding illness and building up a passion for wellness will bring us closer to an equally represented healthcare system.
The regression of diabetes care, from the initial perspectives of insulin’s founders to the current battle for its affordability, reflects a disturbing shift in the priorities of the American medical industry. Instead of a focus to cure disease, companies like PBMs pursue wealth and control. This misplaced focus and lack of awareness towards diabetes issues has led people to death through insulin rationing. People will intentionally skip taking their insulin medication in order to afford paying for basic necessities. Survival should not come with an added burden of unjust costs due to a highly common, treatable condition. The greed of pharmaceutical companies and pharmacy benefit managers is intolerable. Low-cost solutions exist, and manufacturers could still make a profit. As Moran-Thomas writes, “It’s one thing to live with a condition for which no treatment exists; it’s another to live with the knowledge that lifesaving treatment exists but is out of reach” (Moran-Thomas 294).
Author: Mary Grace Dunigan
Our ENGL 110 final project had a specific focus on technology, as our class was titled “Justice in a Digital World.” Professor Erica Quinones encouraged us to find current issues that combined technology and injustice. As someone who is interested in biomedical research, I sought out a topic rooted in medicine. Recent news indicated a surge in insulin price protests, so I decided to dive into this topic using insulin as my technology.
In an attempt to incorporate more of what we discussed in class, I considered other avenues like how insurance companies may use harmful data algorithms to choose whether or not a patient receives coverage on their insulin. Ideas like this were suggested in Weapons of Math Destruction by Cathy O’Neil. However, because of the lack of research on insurance algorithms, I discovered a different target for my research: the medical supply chain. This idea easily spiraled into many, due to its complex and deeply interconnected aspects.
Because insulin production and delivery is so multifaceted, I had drafts written that included a variety of different points, which did not make it to my final paper you see here. Choosing what to keep and what to leave out was challenging, as I wanted to expose the issue as much as possible. This is the difficult thing about any kind of research; there is so much you want to share, yet so much that goes unsaid. It is important to find a healthy balance between staying concise and including as much diverse information as possible.
This project offered me an opportunity to explore a field unknown to me, as I am unfamiliar with the day to day struggles that those with diabetes are faced with. I was able to put myself in someone else’s shoes and advocate for their situation. As you will gather from my paper, some medical companies and researchers prioritize profit over the welfare of communities. Writing about this injustice drives my future research aspirations to focus on areas where real people are struggling, rather than focusing on profit.
Instructor: Erica Quinones
Our E110 course explored “Justice in the Digital World,” asking how everyday technologies shape our identities, contribute to inequality, and inform our ideas of “justice.” Our readings focus primarily on our relationships to algorithmic technologies, which guide decision-making in everything from student loans to music streaming. Thinking about the relationship between tech and society encourages students to consider how the technologies they depend on extend the cultural patterns they claim to revolutionize.
The final research paper allows students to extend our class conversations to topics and techs we might’ve overlooked. This paper builds on two previous assignments, an op-ed wherein students commented on a current tech debate, and a mockumentary wherein students speculated on future technosocial relationships by imagining their own tech apocalypse. Many students return to a technology or ethical dilemma they explored in those assignments for their final paper, allowing them to reflect on how their thinking changed throughout the course, raise new questions they left unanswered, and synthesize their thinking with new research. A delightful part of this process includes a library trip where students find the call number for a relevant book online then shelf-read to find other texts that did not initially appear.
Works Cited
“About Type 1 Diabetes.” Center for Disease Control and Prevention. 15 May 2024. https://www.cdc.gov/diabetes/about/about-type-1-diabetes.html#:~:text=Overview,self%2Dmanagement%20education%20and%20support. Accessed 5 January 2025.
“About the Special Diabetes Program.” National Institute of Diabetes and Digestive and Kidney Diseases. May 2024. https://www.niddk.nih.gov/about-niddk/research-areas/diabetes/type-1-diabetes-special-statutory-funding-program/about-special-diabetes-program. Accessed 5 January 2024.
Aronson, Jeffrey and Richard Green. “Me?Too Pharmaceutical Products: History, Definitions, Examples, and Relevance to Drug Shortages and Essential Medicines Lists.” British Journal of Clinical Pharmacology, vol. 86, no. 11, 2020, pp. 2114-2122. https://doi.org/10.1111/bcp.14327. Accessed 8 December 2024.
Bakkila, Baylee F., et al. “Catastrophic Spending on Insulin in the United States, 2017-18.” Health Affairs, vol. 41, no. 7 July 2022. https://doi.org/10.1377/hlthaff.2021.01788. Accessed 2 December 2024.
Cohen, Joshua P. “Insulin’s Out-Of-Pocket Cost Burden to Diabetic Patients Continues to Rise Despite Reduced Net Costs to PBMs.” Forbes. 5 January 2021. https://www.forbes.com/sites/joshuacohen/2021/01/05/insulins-out-of-pocket-cost-burden-to-diabetic-patients-continues-to-rise-despite-reduced-net-costs-to-pbms/. Accessed 1 December 2024.
Daniels, Pam. “Diabetes Judgement.” Michigan State University Extension. 19 February 2018. https://www.canr.msu.edu/news/diabetes_judgement. Accessed 13 December 2024.
“FTC Sues Prescription Drug Middlemen for Artificially Inflating Insulin Drug Prices.” Federal Trade Commission. 20 September 2024. https://www.ftc.gov/news-events/news/press-releases/2024/09/ftc-sues-prescription-drug-middlemen-artificially-inflating-insulin-drug-prices. Accessed 8 December 2024.
Gaffney, Adam, et al. “Prevalence and Correlates of Patient Rationing of Insulin in the United States: a National Survey.” Annals of Internal Medicine, vol. 175, no. 11, pp. 1623-1626, November 2022. https://doi.org/10.7326/M22-2477. Accessed 5 January 2025.
Gotham, Dzintars, et al. “Production Costs and Potential Prices for Biosimilars of Human Insulin and Insulin Analogues.” BMJ Global Health, vol. 3, no. 5, 2018. https://doi.org/10.1136/bmjgh-2018-000850. Accessed 1 December 2024.
Herman, William H. and Shihchen Kuo. “100 Years of Insulin: Why is Insulin so Expensive and What Can Be Done to Control Its Cost?” Endocrinology and Metabolism Clinics of North America, vol. 50, no. 3, 14 October 2021. https://doi.org/10.1016/j.ecl.2021.09.001. Accessed 2 December 2024.
“High Insulin Costs Are Killing Americans.” Right Care Alliance. https://rightcarealliance.org/activities/insulin/. Accessed 1 December 2024.
“How to Calculate the Amount of Insulin to Prescribe per Month.” Happy Healthy Lives. March 2020. https://www.happyhealthylives.uk/clientfiles/files/How%20to%20calculate%20the%20amount%20of%20insulin%20to%20prescribe%20per%20month%20-%20July%202022.pdf. Accessed 2 December 2024.
“Insulin.” Cleveland Clinic. 17 January 2024. https://my.clevelandclinic.org/health/body/22601-insulin. Accessed 8 December 2024.
Lewis, Gary F. and Patricia L. Brubaker. “The Discovery of Insulin Revisited: Lessons for the Modern Era.” The Journal of Clinical Investigation, vol. 131, no. 1, 2021. https://doi.org/10.1172/JCI142239. Accessed 1 December 2024.
Lovelace, Berkeley, Jr., et al. “Insulin Costs Will Be Capped in 2023, but Most People with Diabetes Won’t Benefit.” NBC News. 29 December 2022. https://www.nbcnews.com/health/health-news/insulin-cost-cap-people-diabetes-no-benefit-rcna58165. Accessed 29 November 2024.
McConnell, Matt. “If I’m Out of Insulin, I’m Going to Die.” Human Rights Watch. Kashyap, Aruna and Lena Simet, ed. 12 April 2022. https://www.hrw.org/report/2022/04/12/if-im-out-insulin-im-going-die/united-states-lack-regulation-fuels-crisis. Accessed 29 November 2024.
McQueen, Hannah and Diane Li. “How Much Does Insulin Cost? Here’s How 32 Brands and Generics Compare.” GoodRx. 11 October 2023. https://www.goodrx.com/healthcare-access/research/how-much-does-insulin-cost-compare-brands. Accessed 2 December 2024.
Mitchell, Aaron P., et al. “Are Financial Payments from the Pharmaceutical Industry Associated with Physician Prescribing? A Systematic Review.” Annals of Internal Medicine, vol. 173, no. 3, 2021, pp. 353-361, https://doi.org/10.7326/M20-5665. Accessed 12 December 2024.
Moran-Thomas, Amy. “One Hundred Years of Insulin for Some.” New England Journal of Medicine, vol. 385, no. 4, 2021, pp. 293-295. https://doi.org/10.1056/NEJMp2105697. Accessed 4 December 2024.
“National Diabetes Statistics Report.” U.S. Centers for Disease Control and Prevention. 15 May 2024. https://www.cdc.gov/diabetes/php/data-research/index.html. Accessed 30 November 2024.
“PBM Basics.” Pharmacists Society of the State of New York. https://www.pssny.org/page/PBMBasics. Accessed 14 December 2024.
Peyrot, Mark, et al. “Patient Perceptions and Preferences for a Mealtime Insulin Delivery Patch.” Diabetes Therapy, vol. 9, no. 1, 2018, pp. 297-307. https://doi.org/10.1007/s13300-017-0365-1. Accessed 8 December 2024.
Pfiester, Elizabeth, et al. “Costs and Underuse of Insulin and Diabetes Supplies: Findings from the 2020 T1International Cross-Sectional Web-Based Survey.” Diabetes Research and Clinical Practice, vol. 179, September 2021. https://doi.org/10.1016/j.diabres.2021.108996. Accessed 4 December 2024.
Qato, Dima, et al. “Pharmacy Benefit Manager Market Concentration for Prescriptions Filled at US Retail Pharmacies.” JAMA Network, vol. 332, no. 15, 10 September 2024. https://doi.org/10.1001/jama.2024.17332. Accessed 10 January 2025.
Qian, Jingjing, et al. “Disclosure of Industry Payments to Prescribers: Industry Payments Might Be a Factor Impacting Generic Drug Prescribing.” Pharmacoepidemiology and Drug Safety, vol. 26, no. 7, 2017, pp. 819-826. https://doi.org/10.1002/pds.4224. Accessed 5 December 2024.
Sable-Smith, Bram. “Insulin’s High Cost Leads to Lethal Rationing.” NPR. 1 September 2018. https://www.npr.org/sections/health-shots/2018/09/01/641615877/insulins-high-cost-leads-to-lethal-rationing. Accessed 29 November 2024.
Shmerling, Robert H. “Why Do Your Prescription Drugs Cost So Much?” Harvard Health Publishing. 18 January 2024. https://www.health.harvard.edu/blog/why-do-your-prescription-drugs-cost-so-much-202401183007. Accessed 2 December 2024.
Shiffman, Jeremy. “Has Donor Prioritization of HIV/AIDS Displaced Aid for Other Health Issues?” Health Policy and Planning, vol. 23, no. 2, March 2008, pp. 95-100. https://doi.org/10.1093/heapol/czm045. Accessed 4 December 2024.
Tanne, Janice H. “Insulin: Eli Lilly Cuts Price to $35 a Month in US After Pleas from Patients and President.” BMJ, vol. 380, 2023, pp. 536. https://doi.org/10.1136/bmj.p536. Accessed 3 December 2024.
Ubl, Stephen J. “New Analysis Shows PBMs Use Fees as a Profit Center.” PhRMA. 18 September 2023. https://phrma.org/Blog/New-analysis-shows-PBMs-use-fees-as-a-profit-center. Accessed 12 December 2024.
“U.S. Federal Funding for HIV/AIDS: Trends Over Time.” Kaiser Family Foundation. 26 March 2024. https://www.kff.org/hivaids/fact-sheet/u-s-federal-funding-for-hivaids-trends-over-time/. Accessed 5 January 2025.
Williams, Ericka W. “How Diabetes Reached Epidemic Proportions, and What We Can Do About It.” UT Southwestern Medical Center. 4 September 2023. https://utswmed.org/medblog/diabetes-testing-a1c-prevention/. Accessed 5 January 2025.
Wouters, Oliver J., et al. “Association of Research and Development Investments with Treatment Costs for New Drugs Approved from 2009 to 2018.” JAMA Network Open, vol. 5, no. 9, 2022. https://doi.org/10.1001/jamanetworkopen.2022.18623. Accessed 2 December 2024.
Xu, Ke, et al. “Household Catastrophic Health Expenditure: a Multicountry Analysis.” The Lancet, vol. 362, no. 9378, 12 July 2003. https://doi.org/10.1016/S0140-6736(03)13861-5. Accessed 2 December 2024.