Our lives are a collection of stories. Some are silly and happy, others filled with heartbreak and sorrow, and some flow with frustration and anger. These stories may be short and sweet or long with plot twists and abrupt endings. Whether we share them or not, we have stories to tell.
For people impacted by diabetes, we have stories that resonate within our community. Stories of hypoglycemic reactions or DKA, mentors and supporters in our healthcare system, and stories of access to the technology, drugs, and care that keeps us alive.
We want the diabetes access stories, because they matter.
By we, I mean the diabetes community. Last week, diaTribe’s Adam Brown and Kelly Close gathered a group of individual advocates and diabetes advocacy organizations on a call, prompted by the recent decision by United Health Care to restrict access of insulin pumps for adult members. While the conversation began with the decision, it quickly became a discussion about overall access… not just insulin pumps.
And from that call, it’s clear that while we all have access stories, there was not one place to house them all. We needed that, so Diabetes Patient Advocacy Coalition has stepped up to collect our stories to share with the public, including the healthcare community and policy makers. By providing these stories, we can build a plan to connect patient access issues and solutions that include our community. (I’m a big fan of “nothing about us without us” and having a seat at every table that makes decisions about our community.)
Why #DiabetesAccessMatters NOW?
I’ve seen comments in the community that range from: “I’ve been talking about restrictive access to diabetes supplies for years and no one seems to listen!” to “Why did insulin pumps get people screaming and not meters or insulin?”
Here’s my take:
- If you are one advocate or one organization, you’re not going to make much noise. Sorry to burst that bubble, but hell, I know this first hand. It takes a united front across several diabetes organizations and several advocates to impact change. There just hasn’t been that unified commitment groundswell until now.
- It’s always been about access. We individually mount campaigns within our individual insurance plans for overrides on the amount of strips. We individually ask our healthcare team to appeal a decision on the type of insulin insurance will cover. We individually spend hours, days, months building cases for Medicare coverage for CGM. We have the tools and technology now to build a unified front.
- The tipping point was insulin pumps, but the issue is access. It could have been meters or insulin or any aspect of treatment. Perhaps it should have been something else (we’ve tried in the past to raise the access alarm), but we’ve morphed quickly from #MyPumpMyChoice to #DiabetesAccessMatters because it’s about more than insulin pumps.
Why is DPAC Collecting The Stories?
We work with ALL diabetes organizations that may specialize in one or two types of diabetes (i.e. JDRF is a wonderful organization, but they represent only Type 1 PWD.), to amplify the voice of the patient. The diaTribe Foundation is a 501(c)(3) and cannot use the stories for lobbying policymakers; DPAC can. (DPAC is a 501(c)(4) non-profit and the big difference is political lobbying.)
But the stories are for all organizations and advocates to use.
Your story will be shared across the community.
Your story will be used to show the frustrations and roadblocks to access and choice.
Your story becomes part of the larger story we share with insurance companies and policymakers.