From JDRF Children’s Congress to the Artificial Pancreas: One Mother’s Story
All of the conversations around the election got me thinking about the impact a political campaign may have on people with various medical needs, particularly those living with diabetes. I was able to get in touch with Stefany Shaheen, 2011 JDRF Children’s Congress Chair, to gain more insight into the role politics may play when it comes to diabetes.
Stefany’s daughter Elle was diagnosed with type 1 diabetes when she was 8 years old. With four children under the age of 8, Stefany was trying her best to cope and learn new ways to keep Elle in good health.
“That was a very challenging time,” she said. “One of the things that helped me get through that period was focusing on what we could do to make this better for not only our family, but also for others. That’s ultimately what led us to JDRF.”
Shortly after Elle’s diagnosis, Stefany was able to meet with Dean Kamen who invented the first insulin pump. “Dean mentioned some medical research that was being done and suggested I look into it,” she said. “At that point, I turned straight to JDRF to identify clinical trials Elle might be eligible for.”
Elle ended up qualifying for a two-and-a-half year clinical trial. It started with a two week stay at Yale New Haven Hospital, followed by the same regimen one year later and quarterly visits. Stefany said although it was a big commitment for the family, it was a turning point for Elle.
“It exposed her to this community of doctors, researchers and nurses, many of whom had diabetes themselves, and she was able to connect with them in a way I never would have been able to connect with her,” Stefany said. “We came out of the first part of that trial and she was testing her blood sugar by herself and injecting insulin shortly after her diagnosis.”
Shortly thereafter, Elle applied for the 2009 JDRF Children’s Congress and was accepted, and Stefany served as her chaperone. They were excited to be a part of it because it gave them the opportunity to introduce JDRF and the diabetes cause to new members of Congress and to reinforce it for returning members. The Children’s Congress coincides with the start of a new Congress (every two years), so after serving as Elle’s chaperone in 2009, the outgoing Chair, Cynthia Ford, asked Stefany if she would consider chairing the 2011 Children’s Congress.
“Once I accepted the position as Chair for 2011, I was involved in helping select the delegates from all of the states as well as international delegates,” Stefany said. “I helped shape the agenda and was able to help encourage special guests to join us. In fact, Justice Sotomayor agreed to participate in Children’s Congress and addressed the delegates. Her interaction with these young people was, from my perspective, one of the most powerful experiences of the 2011 Children’s Congress. It was amazing.”
One of the reasons Stefany agreed to serve as 2011 Chair was the Children’s Congress’s emphasis on advancing the work being done on the artificial pancreas. Stefany’s family really believes in the technology, but had concerns about the rate at which the FDA had been working to approve or push the scientists to refine the technology.
“For a long time the FDA was not clear about what it would take for them to approve an artificial pancreas device,” Stefany said. “In general, the concern was that the technology wasn’t effective enough to be relied on to deliver insulin or to shut a pump off if the blood sugar level was dropping. Yet, at the time, we had all of these people wearing insulin pumps with no information about what’s happening to the blood sugar unless they did a finger stick.”
According to Stefany, the United States is taking longer than 50 other countries in the world to adopt technology. Once adopted, people who are living with type 1 diabetes will be closer to experiencing the potential benefits of an artificial pancreas.
“In part, it’s because the regulators, researchers and patients hadn’t had a real conversation,” Stefany said. “We invited FDA Commissioner Hamburg to be a part of the Congress and had the folks responsible at the FDA for overseeing this research to be a part of the panel testifying before the Senate. During this testimony, the FDA announced that guidance for industry experts who were working on developing the artificial pancreas would be issued by December of 2011. This was a huge step forward.”
After the Congress, Elle was able to participate in a clinical trial for an artificial pancreas. “During the trial she didn’t have to test her blood sugar at all for three days because the technology was managing it for her,” Stefany said. “I sat and watched the monitor as she slept and her blood sugar, which usually fluctuates high and low through the night, was almost a flat line.”
Based on Stefany’s experiences in the political realm, she feels diabetes is not a partisan issue. “It’s a people issue,” she said. “I really believe that investments in science, technology and research designed to improve quality of life and reduce costs in our healthcare system is not a partisan issue. It’s the right thing to do for our country.”
I’m so appreciative of Stefany’s candor. I can’t thank her enough for taking the time to share her story. Anyone interested in more information about the JDRF Children’s Congress can find more info by clicking here.
All the best,
Disclosure: Stefany Shaheen received no compensation for this post. All opinions contained in this post reflect those of the interviewee, and not of Sanofi US, its employees, agencies or affiliates.