Patient advocacy groups are (mostly) hailing Eli Lilly’s vow to cut insulin list prices, which came Wednesday in the face of mounting pressure over its diabetes-treatment costs. However, so far, the groups haven’t been able to extract similar promises from the other two main producers of the life-saving drug, Sanofi and Novo Nordisk.

Still, that’s not for a lack of trying. 

The pair has already faced fresh demands that they follow suit from Sen. Bernie Sanders (I-VT). The newly minted chair of the Senate Health, Education, Labor and Pensions (HELP) committee on Wednesday called on Novo’s and Sanofi’s CEOs to emulate Lilly. 

Thus far, both companies are directing reporters to their existing patient-assistance programs and affordability offerings. For commercially insured patients, Novo’s co-pay programs allow patients to pay between $25 and $35, depending on the product, a representative said. 

Meanwhile, Sanofi said its program for the commercially insured limits out-of-pocket expenses for a majority of participating patients to $15 or less for their diabetes medicines on a 30-day supply, regardless of income or plan design.

These programs, however, are distinct from Lilly’s package of steps, which promises to bring relief to the 30 million Americans who suffer from the metabolic disease. This includes a plan to cut the list prices of some of its insulin products by 70% and cap out-of-pocket insulin costs for commercially insured patients at $35 a month, as the federal government recently did for those insured by Medicare. 

While patient groups, like the American Diabetes Association and T1International, cheered the move, their response was nuanced. Many attributed Lilly’s move more to grassroots advocacy than to a benevolent act on the company’s part. 

“Let us be abundantly clear, these lower prices are not thanks to Eli Lilly’s generosity — this win is thanks to the relentless pressure and years of activism by patient advocates combined with growing political momentum,” said Merith Basey, executive director of Patients For Affordable Drugs (P4AD), in a statement.

Advocates and the larger diabetes community have been pushing for lower insulin prices for two decades, the group added. That said, patient power was likely one of a number of factors behind the move.

For one, its decision to lower the cost of insulin followed the fake Lilly Twitter account episode of last fall, where a phony-yet-verified account tweeted that “insulin is free now.” By the time it was taken down, the company’s stock price dropped 4% the day after the controversy.

During his recent State of the Union address, President Biden called for a $35-per-month cap on insulin for all Americans. Biden’s proposal, which has garnered bipartisan support, aims to build on the price cap put in place for Medicare beneficiaries as part of the Inflation Reduction Act (IRA) passed last summer. Biden also repeated his call for a universal insulin price cap in a tweet about healthcare costs the morning prior to Lilly’s announcement.

Political scrutiny had been building for some time over large increases in the price of insulin, a drug which was first discovered 100 years ago. The three major insulin makers have markedly increased list prices over the past two decades. For instance, a vial of Sanofi’s Lantus insulin lists for $292.07, up from $34.81 in 2001. Prices for Novo’s Novolog and Lilly’s Humalog have risen by similar rates.

Drugmakers have justified the price hikes as necessary in order to pay higher rebates and discounts to pharmacy benefit managers (PBMs), stakeholders in the healthcare supply chain. Each year, PBMs issue a list of pharmaceuticals that their health plan customers will cover and ever higher rebates are necessary to secure a spot on these drug formularies.

Drugmakers prefer to steer patients to their assistance or coupon programs because by doing that, they can remove upfront cost barriers imposed by insurance plans, like copays or coinsurance, by covering those copays. They simultaneously bill the insurer for the full list price. 

That said, for all the griping about Big Pharma profits, net insulin prices have actually been flat or declining for years. Lilly shared in 2019 that the amount it gets paid for insulin has actually gone down. 

From 2014 to 2018, the net price for Humalog — the price after discounts and rebates — fell to an average of $135 a patient a month, from $147, an 8.1% drop. During that time, Humalog’s average list price rose 51.9% to $594 per patient monthly. 

In a longstanding tug-of-war between the two, drugmakers claim the PBMs aren’t passing savings along to consumers, while PBMs argue their negotiations for rebates help lower overall drug costs. However, it seems clear that not everyone benefits from their negotiated discounts. 

According to a study published in Annals of Internal Medicine, 1.3 million diabetes patients are rationing insulin. That’s a whopping 16.5% of the population surveyed. 

Programs for plan members also may leave the uninsured out in the cold. Limits or requirements for periodic doctor visits or to reapply annually may pose administrative hurdles for the uninsured, who are often among the most vulnerable. 

The three drug companies, which control about 90% of the insulin market, typically all have had those kinds of barriers in their programs, said Sarah Kaminer, legislative director at P4AD

“While the relief is technically available – and often provides companies with a way to push back on pricing backlash – it’s really as simple as lowering their list prices if they actually wanted to remove all barriers for patients no matter what type of insurance they have,” said Kaminer.

Lilly’s decision to bring its list price down toward the net price that it actually receives also eases the aforementioned tug-of-war. The real impact on Lilly’s net sales remains to be seen, but it wouldn’t need to pay the same rebates to PBMs anymore. 

That’s also why holdouts Novo and Sanofi have an incentive to sit on the pricing sidelines, at least for the time being, and read the room. The PBMs could look to squeeze Lilly out in favor of the others, but that won’t happen if the two competitors follow Lilly’s lead.

Still, experts hailed Lilly’s move as monumental. It’s perhaps one of the most significant signs of progress for drug-price patient advocacy since Burroughs Wellcome was pressured into lowering the cost of AIDS drug AZT in the 1980s. At the time, vocal protests by AIDS community activists — dubbed “vigilante consumerism” — led the company to capitulate.

But Lilly’s move may have been just as much a recognition that changing its list price was a shrewd step given the market realities. The company most certainly also considered the IRA provisions, which penalize companies for raising prices above the cost of inflation, as well as Biden’s desire to extend Medicare’s price control on insulin into the private insurance markets. 

It’s further proof that industry is no longer fighting an existential threat to discretionary pricing power, so much as trying to shape new laws to minimize their impact on innovation. If Novo and Sanofi cave into the pressure, their actions will be dictated just as much by political expediency and the distortions in benefit design as by patient power.