You’d think if anyone could handle getting diabetes supplies covered by the family insurance plan, it would be a former healthcare industry lawyer. But you’d be wrong. Like too many other families in the type 1 diabetes (T1D) community, getting supplies covered was a monthly battle, which is why Amy Carletti is so passionate about expanding JDRF’s advocacy efforts in Illinois.
“We had a running joke in my house where I’d tell [her husband, Matt], ‘I’m running to Walgreens for the third time this week,’ or ‘I’m calling the insurance company for the third time this week.’” said Amy, who serves as the JDRF Illinois Chapter Advocacy Co-Chair. “Knowing that I was able to speak the language and still getting immensely frustrated with this, I thought, ‘what is everybody else doing?’”
Amy was an in-house lawyer for a healthcare company when her two-year old son, Owen, was diagnosed with T1D in April 2014. Both Amy and Matt traveled for work, so Amy took family medical leave in order to gain a better handle on Owen’s care before bringing in a nanny. Except, when the leave was up, the Carlettis weren’t quite ready. When she asked for extended leave, she was told she could take one, but her employer would not cover her insurance and her family would have to pay for everything out of pocket.
The good news was that they could move the family onto Matt’s health insurance, but the bad news was there was only one way to make it happen. In order to do so, they would need a Qualifying of Life Event which would allow them to enroll outside the yearly Open Enrollment Period. Owen’s diagnosis wasn’t considered such an event – so Amy needed to quit her job.
“We were scared,” Amy said. “When we sat there and crunched the numbers, it would have been debilitating for our family to have to pay for our health insurance all out of pocket. We didn’t know how long it was going to take to get comfortable with Owen. That’s why I left and we went on Matt’s health insurance.”
By that time they were already involved with JDRF as fundraisers. Within four months of Owen’s diagnosis, they had signed up for the JDRF One Walk and Matt was training for his first JDRF Ride to Cure Diabetes, but Amy wanted to have an impact beyond money.
“I still, though, felt like our family could do more than just raise money,” Amy said. “I wasn’t working, I had sort of lost my professional contacts so Matt was doing most of the fundraising side and I just felt like I wanted to do more.”
That is when she found out about the JDRF Advocacy program. The first step was to sign up as a grassroots advocate. Knowing her struggles with the insurance companies, Amy still wanted to do more for the T1D families who were not as fortunate because the best treatments in the world won’t be any help if they aren’t covered.
“I was going through the fights with the insurance companies,” she said. “I was arguing with them about monitors for Owen and being frustrated and thinking, ‘what is going to happen one day when encapsulation comes down the line and they’re not going to cover it?’”
Eventually she was put in contact with Ann Ford, the outgoing Illinois Advocacy Chair, to see what more she could do. It turned out that Government Days were coming up and the Advocacy team needed someone else to go, so Amy jumped at the opportunity. That is when she found her calling.
“I went and loved it,” she said. “I finally felt like I was doing something more than just raising money. We could make a difference and bring more awareness to the disease and more awareness to why the research is important. “
It turned out that the Advocacy Program wasn’t just raising T1D awareness in Congress, it also included working with the insurance companies. The Coverage 2 Control campaign launched and, after she became Advocacy Co-Chair, she started working along with the National Advocacy Team on insurers, all while meeting with countless local Congressional Reps.
There is still a lot of work to do be done to make life better for the T1D community – bringing more choice to diabetes coverage, protecting insurance availability for everyone with pre-existing conditions, and bringing down the price of insulin – but there is hope because the Advocacy team, everyone from the national staff, to regional leaders like Amy, to the countless grassroots advocates, is working tirelessly to make it so.
They always need more voices and it’s incredibly easy to lend your voice to this fight.
“Being an advocate is easy, it’s just clicking a button,” Amy said. “Just using your voice on social media or in a letter to your congressman. You don’t even have to pick up a phone and call anybody. It’s that easy to just click a button and make your voice heard.”
“Every voice counts because when you start adding up the number of people who are doing that, it’s flooding offices with petitions,” she continued. “They’re seeing 10,000 emails. That makes a big impact. Because once we add everyone’s voices together, it becomes a very loud voice.”
You can sign up to become an advocate online. If you want to do more, the JDRF Advocacy Team is always looking for T1D families to share their story with their local reps and they make the process as easy as can be.
“We organize the meeting, we get it set up, we get it managed,” Amy said. “It’s literally telling the story of how type 1 has affected your life and what you hope for in the future. That’s really it and those are stories I think families tell every day.”
“I’ve gone to meet with [Congressional Representatives] as the sole JDRF rep in DC, but the most impactful ones are the ones we have with families in their districts,” she said. “Those are huge and those they don’t forget. They remember seeing kids in their office. They remember people crying to them about Medicare at the time wasn’t covering CGMs.”
There is a lot of work to be done, but lives are going to be saved and lives are going to get better because of Advocates like Amy Carletti. She’s working with the government at the federal and state levels while the JDRF team is working on insurance companies on multiple fronts.
“I have hope that we are moving towards better things for this disease and the people who deal with it,” she said, “because somebody is looking out for the little guy.”