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Alan Arnfield wasn’t looking for fame, but he received ample press attention after participating in a recent White House announcement on major changes to Medicare insulin pricing caps. The upstate New Yorker with type 2 diabetes (T2D) says he simply responded to an email seeking comment about Medicare beneficiaries struggling to afford insulin. That led to a short video that played during a May 26, 2020, briefing by President Donald Trump in the Rose Garden, as part of the announcement of a new $35 insulin copay cap for certain Medicare plans starting in 2021. There's been a lot of excitement about this move marking an end to skyrocketing insulin prices, which have led to a crisis for many patients , and even some deaths. But of course, this initial price cap is limited to a specific group of seniors. “For me on Medicare’s Part D prescription plan, this will result in savings," says 68-year-old Arnfield. But he's still concerned about his two adult sons living...

  Despite political claims to the contrary, insulin prices are not dropping as a result of President Donald Trump's actions leading up to the presidential election of 2020. Insulin certainly isn't "as cheap as water," as Trump claimed during the presidential debate in late September. His executive orders are controversial and symbolic at best. The underground exchange or "black market" continues to grow, accelerated by the COVID-19 crisis and patients who once relied on insulin from outside the United States. States continue to pass insulin co-pay cap legislation, and California became the first to allow for its own generic insulin development. Insulin prices continue to dominate the national discussion and remain a divisive topic in the midst of the political debate over drug pricing policy reform. The common understanding is that U.S. insulin prices have been jacked up to an unconscionable level and that needs to change, but t...

Minnesota advocate Nicole Smith-Holt, who lost her son due to insulin rationing, was taken into custody after defying police orders about blocking traffic during a Sept. 14 insulin rally in Indianapolis. Grassroots group T1International is organizing protest rallies and vigils for victims of the Insulin Pricing Crisis around the country. T1International also held a dynamic workshop to teach patients how to be effective advocates with Pharma, lawmakers and more . A new documentary film, "Pay or Die," will highlight the human cost of outrageous insulin prices in America. Even before the candlelight vigil and rally protesting high insulin prices began, advocate Nicole Smith-Holt from Minnesota planned to break the law as an act of civil disobedience. She knew she would be confronted by police, and likely end up being taken into custody.  That’s exactly what happened in front of the Eli Lilly headquarters in Indianapolis on Sept. 14, as Nicole gathered with more than 100 others i...

Thinking about Congressional hearings on the current Insulin Pricing Crisis, your first instinct may be to roll your eyes and clench your fists. But hold on a moment... What we're seeing on Capitol Hill now may be something new, Folks. We've reached a point where these Congressional hearings go beyond typical policy jargon to include intrigue and human drama that evokes hints of The Godfather, Robin Hood , and binge-worthy hits like Game of Thrones . After all, we're talking about people literally dying out there after rationing insulin because of unaffordability and lack of access. OK, the GoT comparison may seem a bit extreme, but it actually came up in last week's two days of hearing on April 9-10. I was absolutely glued to the screen, in  popcorn status , on the edge of my seat in suspense -- as I followed the 2.5-hour hearing before a House investigational subcommittee on Wednesday. Before this panel were six people: three representing the Big Three Insulin Manufa...

The world changed for Nicole Smith-Holt when she lost her son Alec in June 2017, just a few weeks after his 26th birthday. He had been living with type 1 diabetes for two years, but the Minnesota mom learned after the fact that he'd been unable to afford his insulin, was rationing what he had, and despite the signs recognized only in hindsight, he tragically died from the effects of diabetic ketoacidosis. Now Nicole is sharing Alec's story across the world. She's spoken with small and large media outlets including People magazine, and her son's story has even prompted rock star Bret Michaels (who lives with T1D himself) to take notice and vow to do what he can to raise awareness on the crisis of skyrocketing insulin prices. Nicole is also pushing for first-of-its-kind legislation in Minnesota to curb those costs, and wants to see the same happen at the federal level. Her advocacy comes at a time when the backlash against insulin and drug pricing is hitt...

 When he introduced legislation earlier this month calling for transparency in insulin pricing in the state of Colorado, Rep. Dylan Roberts had his younger brother Murphy in mind. Murphy Roberts was diagnosed with type 1 at age 10 more than a decade ago, but unfortunately a low blood sugar seizure a couple years ago led to Murphy’s death. He was a 22-year-old junior in college at the time, home from Vermont for summer break and on a hiking trip with his sister. It was in Murphy’s memory that Dylan – now Rep. Roberts , chosen in October 2017 to fill a vacancy in the Colorado House of Representatives – made his first legislation one that his brother would be proud of: calling for more transparency in insulin pricing, building on efforts in other states that have been popping up across the nation. The bill he's championing is HB18-1009 (aka the Diabetes Drug Pricing Transparency Act) . Inspiration largely came from Nevada’s first-in-the-nation law , passed by that sta...