Diabetics need more than $35 insulin coupons

Diabetics need more than

$35 insulin coupons

Only one presidential candidate is running on this life or death issue

By Zoe Witt | Wednesday, October 23, 2024

Providing insulin to all insulin-dependent diabetics is a moral imperative, but in 2024 it’s still not legally mandated by the US government. In this country we are currently free to die if we cannot afford to purchase medication. According to Vice President Kamala Harris’s platform, “Just as she did as Vice President, she will take on Big Pharma to lower drug prices and cap insulin costs, not just for seniors but for all Americans.”

Expanding insulin access is popular among all likely voters. 81% of Republicans polled think no American should pay more than $35 a month for their insulin, which offers Harris a great avenue to capture voters on the right who are disillusioned by Trump. Diabetes is a politically significant issue due to its prevalence and significant expense, making it an obvious focus for Harris. 

Conversely, former President Donald Trump doesn’t mention insulin on his website, and has repeatedly lied about his involvement in the limited changes that have been made. Trump’s proposed abortion bans will lead to the death of more pregnant diabetics, as I reported for Jezebel after the fall of Roe v Wade, and was recently confirmed by ProPublica. It gets worse. Trump’s so-called “concept of a plan” for healthcare will likely lead to patients with pre-existing conditions (including diabetes) being excluded from plans or charged exorbitant fees for health insurance. 

Many diabetics in the US, myself included, have been keeping each other alive for years by organizing direct mutual aid in response to the insulin crisis. According to a 2023 JAMA study one in five adults have rationed the synthetic hormone due to cost, taking less insulin than they need. In 2021 11.6% of the US population had diabetes – a number that’s likely on the rise due to the rampant spread of covid. According to one Penn State study, people “have a 66% higher risk of developing type 1 or type 2 diabetes,” after an infection.

For some, these domestic healthcare policies won’t mitigate Harris’s ties to the horrific treatment of Palestinians in Gaza, which Gen Z voters cite as a key issue they care about. In May an International Criminal Court prosecutor requested arrest warrants for Israeli Prime Minister Benjamin Netanyahu and Minister of Defence Yoav Gallant for crimes against humanity, in part due to “obstruction of aid delivery by humanitarian agencies,” which included insulin pens and other life-sustaining medical supplies. I rationed insulin while working in a restaurant, but I can’t imagine experiencing my acidic blood burning me from the inside out during the ongoing genocide of my people. 

I previously reported for Teen Vogue that while the Inflation Reduction Act legally mandated patients on Medicare be offered covered insulins for a $35 copay, the government has not yet capped the price of insulin. $35 a month might be what many in the US are paying, but it isn’t certain. The fine print explains the insulin Medicare covers is subject to the patient’s insurance plan formulary – this means the specific insulin someone needs might not always get the discount. Further, those who don’t use an insulin pump usually need two different insulin prescriptions every month. Those patients are still paying at least $70… just for insulin.

When manufacturers Eli Lilly and Novo Nordisk announced they’d be lowering some wholesale (list) insulin prices, expanding coupons, and providing pharmacy specific copay reductions, Democrats posited that this was due to pressure from the Medicare copay cap in the IRA. However, both pharmaceutical companies have entered into settlements with US States that legally require them to provide $35 insulin for the next five years. 

What exactly happens when the terms of these settlements expire? And is five years of coupons with quantity limits sufficient payment for the level of suffering insulin-dependents and their loved ones have endured? 

Lane Kleber, an insulin-dependent diabetic living in Brooklyn, has been using these coupons to get her Novolog vials for a few months. Kleber told me she’s uninsured, and has been periodically since she was laid off last summer. “It was difficult to activate my account to start using the coupons, but now they work great. I pay a bit more than $35 because I get four vials instead of three,” but it’s much less than the full price alternative according to Kleber. In the event that Kleber couldn’t use these manufacturer coupons, she told me she’d rely on fellow diabetics to help her get what she needs. “I’d reach out to the diabetes community through my instagram account that is focused on my experience with diabetes. I’ve had to lean on the community at times when I wasn’t able to get insulin, CGM supplies, or pump supplies,” said Kleber. 

Pharmaceutical manufacturers’ desire to self-regulate isn’t new. In 2021 Maine legislators were working to pass an insulin bill similar to the Alec Smith Insulin Affordability Act (a Minnesota bill Gov. Tim Walz signed into law in 2020 that has survived multiple legal challenges from Pharmaceutical Research and Manufacturers of America.) While Maine’s insulin safety-net ultimately passed, Nick Jonas’ nonprofit Beyond Type 1 and the Diabetes Leadership Council sent letters discouraging the legislation. Their talking points were disturbingly similar to what insulin manufacturer Eli Lilly submitted, referring to the bill as “duplicative” or “redundant.”

The manufacturer coupons also can’t be used by anyone on federal insurance like Medicare or Medicaid. If that’s you and your formulary doesn’t cover the insulin you use, you have no legal options for discounts. Some of the poorest and most vulnerable patients could be forced to pay hundreds, ration insulin, or seek out mutual aid, when the private insurance company managing their government benefits changes a plan document.

Unlimited quantities of all types of insulin should be easily accessible. In 2022 Human Rights Watch found that the US government’s failure to regulate essential medication prices “contravenes the right to health,” and likely violates multiple international treaties we’ve signed. They recommended that Congress “reform the US health and drug pricing systems to ensure that essential medicines, including analog insulin, are affordable to all people who need them in the United States.” Grievously, we’re not close. For example, the Senate HELP Committee released a report in May explaining how GLP-1 drugs alone, which are manufactured by the two biggest insulin companies, “could bankrupt American health care.” 

Amidst distorted claims of insulin prices finally being solved, a new problem has emerged: global insulin shortages. What good is fairly priced insulin if the manufacturers stop producing it? 

“Pharmaceutical companies are slashing insulin production in favour of more lucrative weight-loss drugs,” according to Al Jazeera reporter Andy Hirschfeld. After Novo Nordisk announced their long-acting insulin Levemir would get a reduced wholesale (list) price, but before the change took effect, the company discontinued it altogether in the US. 

The demand for GLP-1s is affecting other countries' insulin access too. Médecins Sans Frontières (aka Doctors without Borders) reports that Novo Nordisk has abruptly decided to stop supplying South Africa with human insulin pens. “Forcing tens of thousands of people with diabetes to switch from pens to vials and syringes on short notice is unacceptable and will have very serious consequences,” said Camren McAravey, Country Operational Representative for MSF in South Africa, in a press release.

The wholesale price tag to manage one patient’s diabetes in the US is over $22,000 annually. Roughly half of that is spent on medications like insulin and GLP-1s. The other half includes necessary supplies for blood sugar monitoring, injections, and pumps, as well as costs to see healthcare providers. Meanwhile Hirschfeld reported, “Last year, Novo Nordisk became Europe’s most valuable company – beating LVMH – the parent company of high-end luxury brands like clothing brand Louis Vuitton and champagne Dom Perignon – for the title.”

Within our insufficient and disappointing two-party system, Harris is the clear choice in terms of domestic insulin policy, but I want to see more from her. Our situation demands a comprehensive plan for access to insulin amidst shortages and production cuts, and we must address the astronomical cost of everything else that goes into diabetes care.

Human Rights Watch recommended that the US make insulin free. While something like universal insulin price caps or $35 copays are a good start, they simply aren't enough. Insulin-dependents become ill and die without our synthetic insulin, but paradoxically we can become ill and die if we can’t afford blood sugar testing supplies to dose our insulin properly. Without accessible healthcare, a small infection can spiral into a death sentence, particularly for those who are rationing. Insulin for all is the bare minimum, and we need Harris to deliver.