Meet Christel on the Beyond Type 1 Leadership Council
Meet Christel Aprigliano, the newest member of the Beyond Type 1 Advisory Council!
The co-founder and CEO of the Diabetes Patient Advocacy Coalition—and longtime diabetes community leader—has lived with type 1 diabetes for over 30 years. Christel sat down with Beyond Type 1 and shared her experience bringing new perspectives to diabetes advocacy efforts, ways she explores connecting with others and the secret to where she gets her energy.
Her self-diagnosis
It was the day after Easter, 1983. Christel was reading a list of signs and symptoms of type 1 diabetes in Time magazine when she realized that her own body was exhibiting them.
“I said yes to all of [the self-diagnosing questions], and then I turned to a friend and said, ‘I think I know what I have, I think I have diabetes,’ and the individual said, ‘No, only old people get that.’”
Despite having access to medical care and resources, Christel was not spared the period of burnout that many people with diabetes experience in adolescence.
“I spent a lot of my teens and early twenties trying to ignore it and thinking it could go away. What they told me was that diabetes would be cured in five years, and until there was a cure, I needed to start taking care of myself.”
Although curing type 1 diabetes continues to take a bit longer than medical professionals and people with diabetes (PWDs) hoped, Christel found a community that has nourished her spirit of determination. That community appeared unexpectedly—Christel told us she didn’t know many other people with diabetes until she developed an idea that led to a change in how she viewed her role in the diabetes space.
One night, Christel complained to her podcast-loving husband that while there were plenty of podcasts about his interests, there were none about diabetes. His response?
Well, what are you gonna do about it?
Making new connections
“The next thing we know, we have a podcast [called Diabetic Feed]. Back then, there wasn’t a lot of people on the internet talking about the day-to-day life of living with diabetes. These individuals started to become a source of support and a source of comfort for me that family can’t provide.”
The podcast got Christel moving on the path toward becoming a diabetes advocate, “A lot of my inspiration comes from being challenged like that,” she said, “That came out of the frustration of feeling like I don’t know enough about diabetes and wanting to connect with a community that was just starting.”
In the years since launching that first project, Christel has focused on building lasting connections with a solid network of like-minded people.
“When I left my career after having my daughter, I realized that I missed the closeness and the camaraderie that I had with that group of people,” Christel said, “We were still friends, but I wanted to get more involved in the diabetes world again. I started a blog, “The Perfect D,” and it was because I got angry about something that was going on in the diabetes space.”
Through her online connections, Christel discovered in the diabetes community a need for safe spaces. She eventually found herself establishing a fresh kind of gathering for more face-time and discussion:
“The Diabetes Unconference is a psychosocial event that allows people to talk about diabetes in a safe environment (it’s sort of the what happens in Vegas stays in Vegas of diabetes), things like burnout and depression, complications and fears and intimacy,” Christel said.
She continued, “Less than a year later, I co-founded the Diabetes Patient Advocacy Coalition. There was a gap—there are a lot of really great organizations out there in relation to advocacy, but each had different priorities. DPAC focuses solely on the patient voice in policy advocacy. We represent the entire diabetes patient community, and we do so in conjunction with working with all of the other organizations.”
Changing policy
DPAC has been responsible for such tangible policy actions as persuading Medicare to cover CGMs.
Christel showed her representative in Congress the device on her arm and explained how it worked, and why it was critical, and he was amazed at the technology. When she told him that the device would no longer be covered at age 65, the rep turned to his legislative assistant and said definitively, “We’re co-sponsoring this bill.”
“Luckily it was handled directly by Medicare and didn’t have to go into law,” Christel said of the policy change. “You’ve got to take the small wins. For me, what is so frustrating is to see that the technology that saves so much money in the long run, we have to fight for now.”
We wondered: how does DPAC decide what issues to advocate for? And where does all of Christel’s seemingly endless energy come from?
“DPAC was founded under a guise of safety, quality and access,” she said, “We try to provide education and a greater understanding of some of the issues that wouldn’t normally be something that the average [person living with diabetes would know about]. Things like non-medical switching and gag clauses are not very sexy, but they impact us greatly. We work with professional organizations because if it impacts the professional, in the end it will impact the patient. If we can’t get access to doctor’s appointments and to see a diabetes educator, then it’s actually hurting us.”
“Where do I get my energy? I live on caffeine,” she laughed, “I have an amazing family who knows how important this is to me.”
Defining “success”
Christel maintains a wider perspective and awareness that some of the larger issues in the diabetes community are not going to be solved overnight, she said, and “we can’t be disappointed if something didn’t get solved immediately.”
“Having diabetes has changed the way I look at success. [DPAC focuses] on the patient voice—does an issue impact the patient positively or negatively? Because at the end of the day, it is all about us,” Christel said, “What makes us also different from other organizations is that we are a 501(c)4. A c-4 is also called a social welfare organization. We have the ability to do unlimited lobbying. We have a lobbyist (she also has type 1) so she goes up on Capitol Hill and talks to every single person about diabetes. Because of that, our funding can come from any source, and we work with everybody. We work with all organizations and all companies to make sure that the patient voice is heard.”
“I look to my community, I look to us, to make sure on the days where we feel like we’re not getting anywhere and we’re spinning our wheels, or if there was a failure on a state piece of legislation, is that we are fighters, and we’re going to continue to fight because there’s something about our community that is so different.”
When she’s not advocating online or in-person, Christel, a self-proclaimed “sci-fi geek,” can be found watching shows like Wynonna Earp, El Ministerio del Tiempo, the Jack Ryan series—basically anything that “blows up or is alien.”
“I’m really excited to be part of the Leadership Council because Beyond Type 1 is a wonderful community to start with, and we have such a capability as a community to help each other,” she said.
