Patients notched a win over the pharmaceutical industry on June 5 when the Nevada Legislature revived a bill requiring insulin makers to disclose the profits they make on the life-sustaining drug, according to Kaiser Health News (KHN). In a few other states, bills addressing drug prices have stalled.
Prominent patient advocacy groups, such as the American Diabetes Association (ADA), have maintained silence while diabetes patients championed the bill and lobbied the legislature during this debate—a silence that experts say stems from financial ties, according to the article.
“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.
Many of the dozens of U.S. diabetes advocacy organizations receive significant portions of their funding from insulin manufacturers, the article contends. The Nevada bill also requires such organizations operating in-state to disclose all contributions they receive from the pharma 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 various national patient advocacy groups, including the ADA, the Diabetes Patient Advocacy Coalition (DPAC), 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 ADA—which operates a Nevada chapter––accepted at least $3.9 million from Eli Lilly and Sanofi last year, the KHN article notes.
National advocacy groups have taken no position on the Nevada legislation, and local diabetes groups have also stayed on the sidelines. According to KHN, their “advocacy” generally focuses on pressuring insurers to pay the price of insulin, not on protesting price increases.
State Senator Yvanna Cancela, who sponsored the bill, said she believed requiring diabetes advocacy groups to reveal their sources of funding was key to understanding their positions and to bringing prices down.
“I believe there should be transparency across the health care system,” she said.
Nevada Governor Brian Sandoval has announced that he intends to sign the bill.
Source: Kaiser Health News; June 7, 2017.