Nevada bill would track profits made by insulin makers

Patients notched a rare win over the pharmaceutical industry this week when the Nevada Legislature revived a bill requiring insulin makers to disclose the profits they make on the life-sustaining drug. In a handful of other states, bills addressing drug prices have stalled.

Many of the 1.25 million Americans who live with Type 1 diabetes cheered the legislative effort in Nevada as an important first step in their fight against skyrocketing costs of a drug on which their lives depend. The cost of insulin medications has steadily risen over the past decade by nearly 300 percent.

Prominent patient advocacy groups, such as the American Diabetes Association, have maintained stony silence while diabetes patients championed the bill and lobbied the Legislature during this debate — a silence that patients and experts say stems from financial ties.

“Normally all of the patient advocacy groups rally around causes and piggyback on each other in a productive way — that’s what advocacy groups are good at — but that hasn’t been the case here,” said Thom Scher, chief operating officer of Beyond Type 1, which does not accept donations from the pharmaceutical industry. Beyond Type 1 has not issued a formal opinion on the Nevada bill.

Many of the dozens of U.S. diabetes advocacy organizations, large and small, garner significant portions of their funding from insulin manufacturers. The Nevada bill also requires such organizations operating in-state to disclose all contributions they receive from the pharmaceutical industry to discourage that sort of conflict.

In 2016, two of the “big three” insulin producers — Eli Lilly and Sanofi — contributed at least $4.7 million to such national patient advocacy groups as the American Diabetes Association, Diabetes Patient Advocacy Coalition, JDRF International and the Diabetes Hands Foundation, according to company disclosures. The third major insulin manufacturer, Novo Nordisk, does not disclose its charitable contributions.

The advocacy groups have taken no position on the Nevada legislation. Generally speaking, their advocacy focuses on pressuring insurers to pay the price of insulin, not protesting price rises.

Local diabetes groups, hardly free from conflicts with the pharmaceutical industry, have also stayed on the sidelines.

The Nevada Diabetes Association for Children and Adults officially issued a neutral opinion.

“The Nevada Diabetes Association supports regulations on medications. The problem with SB 265 is that it is not just regulating medication but the industry,” said Executive Director Sarah Gleich.

The nonprofit does not list its fiscal sponsors on its website or most recent 990 tax form.