Should advocating with elected officials be a tool in our toolbox for achieving change in healthcare? Or is it a waste of time? I went to DC to find out. It was fascinating.
Whether we want it to be or not, healthcare is political.
To change care, we need to change what is and isn’t paid for. Those rules live in insurance policies. In the US, the largest provider of health insurance is the federal government via the Center for Medicare and Medicaid Services, or CMS. Changes in commercial policies tend to trickle down from CMS policy. CMS reimbursement policy is written by elected officials and their appointees.
Blue Circle Health exists to improve T1D care. We have data showing that better is possible. We have testimonials of those we serve describing how broken the US healthcare system is and stories of lives saved. But is it a good use of time and resources to bring our case to elected officials?
To answer the question, two members of the Blue Circle team and I took part in a “Hill Day” organized by the Diabetes Patient Advocacy Coalition (DPAC). Roughly 100 people participated representing 30 states and 17 different nonprofit T1D organizations. There was a buzz of excitement, determination, and hope in the group.
Day 1 was training day. We were briefed on the 7 “congressional priorities” identified by DPAC. The policies, in various stages of support, covered a range of important topics: lower cost insulin, easier access to more education and registered dietitians, increased access to devices, and early screening.
Our job was to make it personal. The Senators need to know how this helps their constituents. It’s ok to not have all the answers. It’s not ok to make stuff up. These policies are all bipartisan. No, not bipartisan, non-partisan! We won’t meet with actual Senators. It’ll be people from their health policy teams. They’re really the ones that call the shots. We’ll have 30 minutes to share our personal stories and describe the congressional priorities. But we should plan on 20 minutes. Get a card. Get a picture. Expect plans to change.
With training complete, we were organized into groups by states. My group of 5 had Connecticut, Rhode Island, and my home state of Massachusetts. We met at 7am, researched each Senator’s voting records, boarded a bus to the Hill, developed our elevator pitches, then practiced them in actual elevators. Lots of elevators.
We were greeted by a young person in our first Senator’s office. She informed us that the Senator’s healthcare-focused legislative aide was called out last minute. She’d be hosting the meeting. The next state offered us a healthcare aide that explained that he works with the Senator’s healthcare lead aide. I wondered how many healthcare aides the Senator employed. In the next state we met with an executive assistant that knew more about type 1 than anyone we encountered that day. Her college roommate lives with T1D.
Between each meeting we walked the halls crossing the paths of other advocates. We shared an elevator with the Mothers Against Media Addiction. I felt guilty when I instinctively checked my phone. We crowded waiting rooms with champions of other causes, all diligently waiting our turns, moving from state to state, delivering our pitches. It was like trick or treating meets Shark Tank.
Our group’s dynamic gelled. The pitch evolved quickly. I enjoyed the learning, the experience, the camaraderie of it all. However, the day did not make clear that advocacy was a worthwhile use of our time. Quite the opposite. Advocating for anything in this political environment felt a bit like lobbying the crew of the Titanic for a re-arrangement of the deck chairs.
I pulled a colleague aside that I have tremendous respect for that has been doing this for years and asked, “Does this make a difference?”
Her expression suggested I might have offended – or at least surprised. She replied, “It makes a difference, but it’s slow work.” She shared some of her experience, which, paired with a bit of research, helped put things in perspective.
The most popular of the pieces of legislation we were advocating for is the INSULIN ACT. It will cap the price of insulin for commercially insured people. It is the needed next chapter of the Inflation Reduction Act which capped the price of insulin for all Medicare recipients three years ago. Even before the Inflation Reduction Act passed, 20 states had already enacted some form of insulin price capping. The INSULIN ACT was simply the latest step in a decades’ long march to ensure access to the hormone people with T1D need to live.
My colleagues were there every step of the way. They grew up with unregulated insulin pricing. They knew the pain it caused first hand. They had lost people. They introduced legislation to their state officials. They brought friends and family affected by T1D to dozens of hill days like this one. When legislation was passed, they attended the press conferences. They did not stop at their states. They went to the next and then to DC, sharing stories, lessons learned, providing the blueprint for better.
During one such visit, Senator Collins of Maine was introduced to a 10 year old girl who shared her wish to take ‘just one day off’ from type 1 diabetes. This meeting is credited with sparking Senator Collins’ advocacy. She and Senator Jean Shaheen of New Hampshire worked across the aisle to create the Senate Diabetes Caucus and to support the Diabetes Prevention Program, the Diabetes Act, the Special Diabetes Program, and the SCREEN for Type 1 Diabetes Act.
Brick by brick, organizations like DPAC and volunteers like my colleagues laid the foundation for a better world for thousands of people they will never meet. They will continue to do so.
Before I landed in Boston, I sent an email to our friends at DPAC thanking them for the experience and requesting time to discuss how Blue Circle Health can help. Advocating will be one of the many ways we fight to improve T1D care. Why?
Because it makes a difference. Even if it’s slow work. But does it need to be?
What if an army of loved ones that have never been involved in the process joined DPAC in this fight? What if they wrote to their elected officials or visited their offices in support of better? How many lives can we save? Let’s find out.
Diabetes Patient Advocacy Coalition:
https://www.diabetespac.org
Blue Circle’s new “Get Involved” page:
