Insulin Crisis is a Human Rights Issue says Human Rights Watch

Will the Senate listen?

Global human rights research and advocacy organization Human Rights Watch issued a 92-page report today arguing that the U.S. government violates the right to health for people with diabetes by failing to ensure equal and affordable access to insulin. 

“Since the U.S. doesn’t regulate drug prices or ensure adequate coverage for insulin costs, countless people who can’t afford expensive insulin are not only straining their financial resources but paying with their health, lives, and livelihoods,” said Matt McConnell, the project’s lead researcher. 

The report outlines the impact of the crisis and blames the U.S. government’s refusal to regulate drug prices, an outlier among wealthy nations in this regard. The organization cites interviews with 50 people, including 18 insulin-dependent people with diabetes — nearly all of whom reported rationing their insulin — and a host of secondary sources and publicly available pricing data. 

This report emerges at a crucial moment, as the U.S. Senate contemplates a newly proposed bipartisan insulin bill. 

“Our proposal holds all parties accountable,” Senators Jeanne Shaheen (D-NH) and Susan Collins (R-ME) write, “by encouraging them to reduce list prices, and critically, it limits out-of-pocket costs for patients with diabetes.” 

Like the one passed earlier this month by the House, the proposal being floated by Sens. Collins and Shaheen does not explicitly address the needs of people without insurance, focusing instead on cost-sharing for the insured. However, this new proposal does go a half-step further in seeking to “encourage” list prices to fall. 

This additional layer meant to drive down prices comes in two flavors. First, it bans the rebates collected by insurance plans and pharmacy benefit managers, the system that the pharmaceutical companies have long argued forces them to raise prices to stay competitive. 

Secondly, it bans insurance companies from requiring prior authorizations — the dreadful process by which your insurance company decides whether your doctor has written the right prescription — on any insulin whose price is rolled back to 2006 levels. This section of the proposal is presumably the part meant to hold that last pesky party — the pharmaceutical industry — accountable, because in theory it incentivizes them to lower the list price. 

But for the pharmaceutical industry, a proposal that doesn’t actually require anything of them is a lobbying grand slam. If a bill that would not force the manufacturers to lower the price of insulin were to pass, a bill that instead relies on regulatory tweaks to the insurance and PBM industries, it would reveal either the Senate’s inability to imagine a pharmaceutical industry that acts anything but benevolently or its complete industry capture. Despite the fact that polls consistently show that U.S. voters want the government to regulate the prices of drugs, the control that the industry has in Washington remains unchallenged.  

The Human Rights Watch report frames the issue in as stark a way as any other organization has done — as an abuse of human rights. The gravity of such a declaration hardly seems to match the proposals on the table.

As the report reminds us, the U.S. has never ratified the Universal Declaration of Human Rights and the International Covenant on Economic, Social and Cultural Rights (ICESCR), which would affirm the government’s obligation to ensure the provision of health care for its citizens. As it stands, the U.S. government continues to walk a very different path.

Want to submit your thoughts to Sen. Collins and Sen. Shaheen? The senators ask “stakeholders” to send feedback to insulin@shaheen.senate.gov.