Patient Power Shines on US Federal and Global Stages
15 May 2023, 9:29 a.m. in #insulin4all USA, Global Stories, News & Statements by T1International
People living with diabetes and their allies have proven over the years that patients have power and that their power can create lasting change. This continues to be the case all over the world, with advocates recently gathering in Washington, DC to attend the Senate HELP Committee Hearing entitled: The Need to Make Insulin Affordable for All Americans. The hearing, led by Chairman Senator Bernie Sanders, is the culmination of a decade of advocacy efforts by the #insulin4all community who have demanded public accountability for the global insulin price crisis. The hearing brought together the executives of the largest Pharmacy Benefit Managers (PBM) as well as The Big Three insulin manufacturers - Eli Lilly, Novo Nordisk, and Sanofi.
Prior to the hearing, Senator Sanders heard directly from people living with and impacted by diabetes, including T1International Ambassador, Nicole Smith-Holt. This issue has been centered in the national spotlight because of T1International and other #insulin4all advocates’ dogged advocacy. Three years ago, Senator Sanders traveled with T1International advocates on a Caravan to Canada to buy cheaper insulin across the border and highlight the insulin price crisis in the United States, an impactful experience that he referenced in his opening remarks.
Despite recent announcements from The Big Three that they will be reducing the prices of some of their insulins, this hearing shone a spotlight on the continued finger pointing that happens between PBMs and Insulin Manufacturers, both blaming each other for the reason that insulin prices have been so high. Senator Sanders opened the hearing by naming some of those who lost their lives to insulin rationing, making it clear that what has happened because of corporate greed is unacceptable and needs to change.
He also said: “First, we must make sure that these price reductions go into effect so that every American with diabetes gets the insulin they need at an affordable price. This committee intends to hold a hearing early next year to make certain that happens."
Senator Sanders asked Eli Lilly, Novo Nordisk and Sanofi directly if they would commit to not raising prices again. While Eli Lilly cited not doing so for current products, Novo Norisk and Sanofi evaded the question. Twenty-five people directly impacted by diabetes, wearing shirts and pins with messages including “Our Blood is on your hands” and “Access to Insulin is a Human Right” witnessed that promise for a follow-up hearing. They shared messages to the insulin manufacturers online and before and after the event. Advocates sent a clear signal that the #insulin4all community would continue fighting for legislation to cap insulin prices because their recent announcement to lower prices is not enough protection.
T1International advocate voices have also recently taken center stage to push forward our ultimate goal of #insuiln4all in other arenas. Advocate and Federal Working Group member Tracy Ramey presented a proposal to the Eli Lilly board and Shareholders (on behalf of Trinity Health and six other co-filers) asking Eli Lilly to adopt a policy which considers the impact on patient access to medicines, like insulin, when the company is deciding whether to apply for secondary or tertiary patents.
Ramey said: “The patent proposal that I presented was the only one that got any response from David Ricks. This shows that he saw the proposal (and T1International) as a threat and that the company felt the need to respond. Ultimately, none of the proposals put forward to hold the company more accountable passed. But shareholder activism is important because it shows the companies that people impacted directly by diabetes are experts, and that we will be facing them on many fronts until we achieve #insulin4all.”
Earlier this month, Board Member Melissa Passarelli attended the United National High Level Hearing on Universal Health Coverage, pushing forward our Global Fight for Five goal and ensuring patient voices were represented to emphasize the importance of access to affordable insulin.
“Being able to represent T1International at the official United Nations hearing meant that more global health experts had the opportunity to learn about our ambitious but achievable goal to ensure that no one has to pay more than 5% of their income for insulin and test strips. It also allowed us to continue to press the need for pharmaceutical industry transparency and to show boldly that patient voices matter,” said Passarelli.
The pharmaceutical industry likely hoped their announcement of lowering some list prices in the United States would end the public outcry to hold them accountable. They were wrong. The insulin price crisis is not over, and advocates will continue to remind patients and the public of just that.
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