Maybe you read somewhere that there was a hearing held last Tuesday by a U.S. House of Representatives subcommittee of the Energy and Commerce committee, on the issues of insulin affordability.
Maybe you watched the hearing and heard testimony from Christel Marchand Aprigliano, CEO of Diabetes Patient Advocacy Coalition, and Dr. William Cefalu from the American Diabetes Association, and JDRF’s new CEO, Aaron Kowalski, as they spoke with the passion that’s been fueling them for years, with the confidence that comes with knowing the truth is on their side.
Maybe you looked in on another hearing held this past Wednesday by the same subcommittee.
In the room being questioned were representatives from the three largest insulin makers doing business in the USA, and the three largest pharmacy benefit managers. It must have been uncomfortable for them at times, as Representative after Representative, republican and democrat, quoted testimony from last Tuesday’s hearing and didn’t allow any of them to get comfortable pointing their fingers at the others.
If you’re new to the diabetes community, or if you live outside of the United States, it might be difficult to understand what the past week and a half has meant to all of us here.
After years of straining to get noticed, our voices are finally being heard. Anyone who’s been marginalized (just ask any non-white person in America) can tell you that being heard means being validated.
The proof of this validation comes after years of asking, pleading, letter writing, Children’s Congresses, and in more recent years, e-mailing and tweeting. It comes after several organizations worked together to bring the issue of affordable access to insulin to the forefront.
And we’re not done yet. There were a lot of statements made by House members of the Oversight and Investigations subcommittee on Wednesday, but the law didn’t change. Pharmacy Benefit Managers can still play their pricing games. Drug manufacturers are still generating a lot of revenue from insulin.
Meanwhile, people without insurance and people of limited means are still rationing insulin. People enrolled in high deductible health plans are still dreading the beginning of a new plan year, when they will pay full price for their insulin and supplies until they pay out thousands of dollars before they hit their deductible limit.
So before you think this is over, and you missed the advocacy train, let me tell you: there is plenty more for all of us to do. We’re on the right track. We need to keep the steamroller going.
And as more than one Representative mentioned, it’s shameful that people had to die before this issue could get noticed. Let’s do what we can so we can reach a day when no one will have to worry about insulin affordability again.
Thank you to all of the advocates big and small who helped open the door to hope again for so many of us. The light is beginning to peak through. Here’s hoping we’re basking in the sunny warmth of a job well done very soon.
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