Christel Marchand Aprigliano is not the kind of diabetes advocate who waits for instructions. When she saw the need for a cohesive advocacy program that transcended “diabetes party lines,” she co-founded The Diabetes Patient Advocacy Coalition (DPAC). When she noticed folks were confused about how to reach their elected officials about issues, she created an app for that.
Now, Aprigliano has set her sites on insulin costs. No, she has not convinced insulin providers to cut prices (yet), but she has, along with her team at DPAC, and in partnership with Novo Nordisk, Lilly, and numerous charitable organizations, including JDRF, created a new program she hopes will help everyone on both sides of the issue—insurance providers and patients – find a way to make this all work better.
Called The Affordable Insulin Project, the program serves not only as a central clearing house for all the coupons, special programs and deals currently available in the insulin market, but perhaps more importantly, educates both employers (health care insurance plan providers) and insulin users on how to understand the system and adapt in a way that is more affordable for both sides.
And it call came to be as a result of personal need.
Last November at a meeting discussing financial barriers to accessing insulin, Aprigliano shared her story of being on a high-deductible insurance plan five years ago. She picked up a month’s supply of insulin and the pharmacist helping her looked at the receipt, did a double take, and said: “The pharmacy tech must have not run your insurance.” The tech had; the receipt was for $1,269.
Later, someone mentioned to Aprigliano that she could have worked with her employer directly to try to change how insulin is covered for her under her plan. “I was like, wait: I can work with my employer on this? And then I thought: if I don’t know this, who else doesn’t?”
From that was born the project. Which includes easy to access online downloadable worksheets, tips and best of all, guides; one for employers and one for employees, explaining why exempting insulin from the deductible or passing rebates to the employee at the point of sale is not just necessary, but financially beneficial for the employer as well as the employee.
The idea, she said, is to educate and guide employees on how to approach employers on the subject, and at the same time educate employers so they can understand why what the employees asks is of value not just to that employee, but to the company as a whole.
Aprigliano said while advocates work to address the pricing issues, this program can help along the way.
“This [price hiking of insulin] did not happen overnight, and it’s not going to be solved overnight,” she said. “So here we look at: what are the steps we can take now. How can we make things better in the meantime?”
The employer guide, she said, uses statistics, facts and charts to help explain that covering insulin in an affordable-to-the-employee way is actually a cost saving step.
It also explains the insulin coverage in general, and what paying out of pocket means. Believe it or not, she said, “most employers do not understand exactly what paying for insulin out of pocket is or means.” That basic concept, set out in easy-to-grasp print, she said, can make a difference right there.
There’s also a worksheet to help patients figure out what they want and need from their insurance, something she started four years ago when she began to purchase her own insurance on the marketplace.
“It’s easy to use, and quite helpful,” she said.
While Aprigliano hopes to see the program grow to include more tools and of course, help push for a change in how insulin can become affordable for everyone, for now, she feels, it’s a positive start.
“We are trying to find ways to help individuals who are frustrated and angry with the way insurance works in the United States,” she said. “People tend to think that if we just get the price of insulin to drop, it will all be okay, but that’s not necessarily the case. The U.S. healthcare system is broken. We’re still going to need to know how to make this system work best for us right now. This program is a start to that.”
The worksheets, guides and information on coupons and deals are all available at no cost here on the Affordable Insulin Project’s website.
Aprigliano has a team available via email to help walk people through any questions they have, or to guide them. Even the coupons and assistance programs may be new to many, she said. “Those programs are extremely underutilized. We can help people find one that might help them.”
“This is not the ultimate solution,” she said. ‘But it is a step in the right direction.”