The insulin affordability crisis has roared back into the headlines in recent weeks.
For the last 2 1/2 years, America’s politicians and media have understandably focused on the coronavirus pandemic. Maybe we have only so much attention to dedicate to the intersection of health, politics, and economics. But with that crisis waning somewhat, and the midterm elections coming up soon, the insulin affordability crisis has once again become a hot button national issue.
Insulin Prices Are Still Crushing Americans With Diabetes
Two recent surveys on the subject agree: Insulin costs remain a grievous burden for a huge percentage of Americans with diabetes. The situation is intolerable for far too many.
The first analysis, published by the academic journal Health Affairs, outlined the state of “catastrophic” spending on insulin, defined as “spending more than 40 percent of their postsubsistence family income on insulin alone.” Using data from 2017 and 2018, the authors found that “Among Americans who use insulin, 14.1 percent reached catastrophic spending over the course of one year, representing almost 1.2 million people.”
Catastrophic spending on insulin was almost entirely concentrated in patients with household incomes of less than $44,000. Nearly two-thirds were on Medicare.
Another study was performed by CharityRx, a prescription discount organization. In this survey, CharityRx found that an extraordinary 80 percent of patients have “taken on credit card debt to afford insulin.” A majority have also had to cut costs elsewhere to afford their life-or-death medication. And 62 percent have done some rationing of insulin, many of whom report immediate negative impacts on their daily life.
These two are just the latest of many similar studies examining the damaging effects of the extraordinarily high cost of insulin in the United States. In 2020, Diabetes Daily partnered with Thrivable to conduct a survey on insulin affordability. Nearly 50 percent of our panel struggled to pay for their insulin, with about one-third intentionally reducing or skipping vital insulin doses — and suffering negative health consequences as a result.
In the most severe cases, high insulin prices have led to deaths. Uncounted are the many patients that deal with chronic high glucose levels and looming complications because they cannot afford the amount of insulin that they need.
The Senate Mulls Its Options
Almost everyone in America agrees that insulin prices should be lower, according to a recent Data for Progress report. The support is bipartisan: An “overwhelming majority” of both Democrats and Republicans agree.
Unfortunately, the last major effort to address insulin prices could not take advantage of that popularity because it was included in a controversial omnibus bill. The expansive Build Back Better package included a measure capping insulin prices (for people with private insurance and Medicare). It passed in Congress in a party-line vote but could not find 50 votes in the Senate.
There’s another measure on the table now in Washington, DC: the Affordable Insulin Now Act. There’s little question that this act would help make insulin more affordable for many Americans. It would not, however, come close to solving all of our insulin price problems. The bill covers only patients with insurance or Medicare. An analysis by Peterson-KFF suggests that only about 25 percent of people with private or employer insurance would save money under the new rule, suggesting that many of the people directly covered by the new act don’t really need the help. Critically, the bill would not reduce insulin list prices, and therefore the uninsured would continue to pay immense prices for their life-saving medication. There are about 30 million Americans without health insurance, nearly 10% of the nation.
This Affordable Insulin Now Act has already passed the House and awaits its moment in the Senate. But it’s unclear if the Senate will put it to a vote.
Senate Majority Leader Chuck Schumer has indicated that he wants to take up more comprehensive legislation that would also address the fate of the uninsured. A bipartisan effort to do exactly that has been advanced by Sens. Susan Collins and Jeanne Shaheen; it’s named the Improving Needed Safeguards for Users of Lifesaving Insulin Now (INSULIN) Act.
The fate of each of these bills is uncertain. Despite broad support for action on the issue, similar proposals have stalled out on Capitol Hill in previous years, and the clock is ticking on the November elections, which could rewrite the legislative landscape and throw all plans, even bipartisan ones, into disarray.
California Takes Matters Into Its Own Hands
California Gov. Gavin Newsom made national news recently when he announced that California intended to produce its own insulin. You can find the announcement in this Twitter video.
“California is going to make its own insulin.”
“The budget I just signed sets aside $100 million so we can contract and make our own insulin at a cheaper price, close to at cost, and to make it available for all.”
California has yet to release additional details, and it’s unclear if its ambition is realistic or not. The high startup cost of insulin manufacturing has often been advanced as an explanation for why we have essentially no biosimilar (generic) insulins. Making insulin is easier said than done.
It’s also possible that California will be beaten to the punch by Civica Rx, a nonprofit organization dedicated to creating and distributing low-cost generic medicines. Civica Rx has many partners, a lot of funding, and a big head start; they promise that they’ll be selling affordable biosimilar insulin by the year 2024.
Of all the proposed solutions to the insulin affordability crisis named above, it is only those from California and Civica Rx that promise to directly provide low-cost insulin to people without health insurance.
Ideally, California’s daring initiative would prove unnecessary, if effective national legislation could limit costs for all insulin users. California might also pass its own insulin price–capping law, something more than a dozen states have already successfully enacted, although most or all of those caps do not apply to patients without health insurance, the most vulnerable of all.