Dissecting Insulin Price Policy and Misinformation

Insulin prices continue to dominate the national discussion and remain a divisive topic in the midst of the political debate over drug pricing policy reform.

The common understanding is that U.S. insulin prices have been jacked up to an unconscionable level and that needs to change, but the details on how to address this problem are anything but clear.

“We clearly know he was looking at this as a publicity stunt to boost himself up going into the election,” said Madden, who’s in his sixth decade of living with T1D and now reliant on Medicare. “But we need to take a breath, and look at how we get something out of this that can put us above politics and benefit people with diabetes. Just talking about the high price of insulin is a big win in of itself, so that we keep this on the public’s mind.”

Reflecting on Trump’s mention of making insulin “as cheap as water” during the first 2020 presidential debate, Madden added: “It’s sad… Clearly that’s not true. [Trump’s] all-too-often dishonest statements market to hopefully a decreasing, sadly gullible minority.”

The emergent Insulin Affordability Crisis in America has forced many people with diabetes to ration their insulin, and some have even died as a result.

Executive orders going nowhere

While reasonable people and policy experts can debate the merits of these orders, the undeniable fact is that they have not taken effect. While the orders are written according to the U.S. Department of Health and Human Services (HHS) policy, the actions needed to implement them are nowhere close to being finalized. In fact, some of them, particularly the Medicare-focused policy, require law change before they could go into effect.

We also can’t overlook the fact that Pharma companies are sure to file legal challenges to some of these proposals. Then it would be up to the courts to decide whether these orders, or any subsequent policy changes or law revisions, are actually allowed.

A good analysis of the realistic policy implications and practical effects can be found on this FactCheck.org rundown. The UK-based grassroots advocacy group T1International group has also issued a statement on these proposals, specific to their #insulin4all campaign.

Advocating at all costs

For Madden, the issue of insulin pricing is personal given his own T1D story. But it’s also an advocacy issue he’s been knee-deep in for many years, from his time as a leader in the American Diabetes Association to his latest appearance at the White House announcement on insulin pricing.

Diagnosed as a 9-year-old about six decades ago, Madden is now on Medicare and said he’s seen firsthand the impact on his own health outcomes as a result of unaffordable insulin and other cost burdens. But he’s one of the lucky ones, as he knows so many struggle to get the life-sustaining medication they need to survive.

How did he wind up behind a White House podium this summer? Madden said he received a call from the Diabetes Policy Advocacy Coalition just a couple of days before the scheduled press conference, asking if he’d be willing to speak on the issue. He agreed, despite his personal politics and feelings about the president.

“Even if it’s a PR stunt, even if it was a political maneuver ahead of an election, it still has the potential to raise awareness on the issue of insulin pricing and even may have the potential to push policy change as well as cost savings,” he said.

“[Patients] are looking to influence policy discussions,” Madden added. “It’s about investing in that idea. I will say thank you to Donald Trump if there is a significant savings from his executive orders.”

In truth, Madden doesn’t believe we’ll see an actual price drop from these policy proposals, and he’s sickened by the recent presidential debate mention of insulin being “as cheap as water.”

Learn more

Just by mentioning this insulin pricing issue, Trump may have done some good. “Maybe we got the exposure we desired. Some new Democrats and even some new Republicans are talking about this topic and maybe that will help us address these excessive prices,” Madden said.

Legalizing imported insulin?

One of the executive orders Trump signed related directly to importing insulin from Canada. This policy initiative was first announced in 2019 by HHS Secretary Alex Azar (who happened to have led Eli Lilly prior to his appointment in 2017).

Americans have turned to other countries for years to get affordable insulin, Canada and Mexico in particular. And as noted, although it’s technically illegal, there’s been a long-standing FDA policy not to interfere as long as the insulin brought in is only for personal use, and not for resale. Now with that being reflected in FDA policy change, it seems as though we’re seeing the legalizing of personal insulin importation — so that’s a win.

But with the COVID-19 pandemic closing borders, the ability for people with diabetes (PWDs) to travel abroad for insulin has come to a dramatic halt in 2020. Many have been unable to get what they need, pushing more people toward the private underground exchanges within the U.S.

State-level action moving the needle

In recent years, despite all the discussion and proposed legislation in Congress, it’s become clear that states are where the rubber meets the road when it comes to taking real action on insulin affordability.

Meanwhile, other states like Minnesota have been working on important laws on emergency insulin access for those in need. They are also tackling the issue of Non-Medical Switching — a tactic in which insurance companies force people to switch medications based on the company’s costs and profit margins, rather than a doctor’s advice or the patient’s real medical needs.

California enables generic drug development

In 2020, California became the first to take a novel approach with a new law allowing the state to develop its own generic versions of medications, including insulin. The state is now able to contract with existing manufacturers to produce lower-cost drugs, and it is possible that the grassroots researchers at Open Insulin in Northern California may be able to participate in this effort. Time will tell.

These are great moves forward at the state level, even as federal policy changes are being announced but not yet implemented. Meanwhile, other efforts continue to help PWDs in need get the insulin they need. See the new Beyond Type 1 program GetInsulin.org, which is a sort of clearinghouse for manufacturer- offered savings programs.

Gradually but surely, help is on the way for people whose lives depend on insulin.

This content is created for Diabetes Mine, a leading consumer health blog focused on the diabetes community that joined ishonest Media in 2015. The Diabetes Mine team is made up of informed patient advocates who are also trained journalists. We focus on providing content that informs and inspires people affected by diabetes.

Read more on: diabetesmine