01 May The Kovler Diabetes Center Goes to Washington
Dr. Lou Philipson, Karen Wu, and Rabia Ali of the University of Chicago Medicine Kovler Diabetes Center at the Capitol for the 2019 Call to Congress.
When Dr. Lou Philipson, MD, PhD,and two Kovler Diabetes Center staffers joined the American Diabetes Association’s Call to Congress this spring, it was their first time—even for Dr. Philipson, a veteran of diabetes care and research.
They found the three-day event in Washington, D.C., which includes a day-long lobbying blitz, unexpectedly moving.
“I was surprised by almost all of it,” said Philipson, director of the Kovler Diabetes Center and the ADA’s president of medicine and science. “The energy, the level of enthusiasm. Here were all these people, some of whom had never left their small town. There was a feeling of being a community. It was an extraordinary experience.”
Rabia Ali, clinical research nurse and Certified Diabetes Educator at Kovler, was touched by the willingness of her fellow advocates to volunteer their time to address the illness. Ali has type 1 diabetes.
“Being surrounded with people who care about diabetes and want to advocate for diabetes—it was so humbling,” she said. “It really made me think.”
The Call to Congress is the ADA’s major advocacy initiative. Every year the event draws hundreds of patients, family members, and health care professionals to the nation’s capital to ask lawmakers to support diabetes research and care.
Philipson, Ali, and Karen Wu, who oversees communications and outreach at Kovler, joined fellow volunteer advocates from across the country. “There were about 200 of us, including some children and a dog—a diabetes hypoglycemia detection dog,” Philipson said.
The event began with a crash course on lobbying, including role-playing practice sessions. The ADA provided talking points and details about diabetes funding, but assured volunteers that they were welcome to speak from the heart.
“They empowered us,” Ali said. “They told us that if we don’t know something, or if we forget any talking points, it’s okay; just talk to them about our personal story.”
Those stories can be powerfully affecting, even to people as familiar with diabetes as the Kovler team.
“Honestly, sitting there and listening to everyone’s stories—I learned a lot,” said Wu.
Ali met a mother from downstate Illinois who was worried about how her son, who was turning 26 and losing his parents’ insurance, would be able to afford insulin. “He had to pick between going to graduate school or getting a job to pay for his insulin,” Ali said.
“There were parents who lost a child to diabetes; there were children whose parents had died of diabetes,” Philipson said. “The whole thing was very moving.”
Making the Case for Diabetes
On lobbying day, the advocates headed to Capitol Hill and lawmakers’ offices. They were asking for:
- Action to make insulin affordable
- A five-year renewal of the Special Diabetes Program, which encompasses research on type 1 diabetes and the diabetes program for high-risk Native Americans, at $200 million per program per year
- $2.165 billion in funding for the National Institute of Diabetes and Digestive and Kidney Diseases for 2020.
- $185 million in funding for the Centers for Disease Control and Prevention’s Division of Diabetes Translation and $30 million for the National Diabetes Prevention Program for 2020
- Improving access to Diabetes Self-Management Training for people on Medicare
For Philipson, the stakes were clear.
“My own research has been dependent on the budgets of the NIH, the NIDDK, and more recently the Special Diabetes Program,” he said. “TrialNet, a very important program, was already cut in half this year because of the uncertainties of passing the Special Diabetes Program.”
And he considers the high cost of insulin a crisis. “For a young person to die from a lack of insulin in our society today is just unacceptable,” he said.
The three from Kovler headed to Capitol Hill, following a packed itinerary. They and other advocates met with staffers for Illinois’ senators, Tammy Duckworth and Dick Durbin, both of whom are members of the Senate Diabetes Caucus. Philipson visited several other senate offices, and he, Ali, and Wu met with aides to U.S. Reps. Jan Schakowsky, Dan Lipinski, and Bobby Rush.
In U.S. Rep. Bobby Rush’s office, Wu, Ali, and Philipson met with legislative assistant Lauren Citron.
At each stop, they spoke about how diabetes had affected their lives. Ali talked about how having the disease inspired her to enter the field. Wu told how her father has type 2 diabetes. Philipson said that “I’ve been trying to help people with diabetes for the last 35 years or so, and it continues to be a struggle.”
They asked for lawmakers’ support. Reaction was extremely positive, especially on the high cost of insulin. “Everyone was very supportive of the mission,” Wu said, though she noted that they talked to Democrats, who dominate the Illinois congressional delegation.
They hadn’t been sure of the reception they would get from Rep. Lipinski, who had voted against the Affordable Care Act. But they had been happily surprised, Philipson said.
“When we started talking about it, the staffer said, ‘Congressman Lipinski is certainly with you.’ We said, ‘Why is that?’ The staffer said, ‘Well, Congressman Lipinski has type 1 diabetes.’”
Another surprise was how well-informed legislative aides were about diabetes and budgetary issues. “They were so educated, not only on diabetes itself but all the bills out there,” Ali said. “They all knew the numbers off the top of their head.”
A Memorable Day
Lobbying turned out to be an endurance activity. “Many of us logged five or six miles of walking,” Philipson said.
Ali and Wu were not just lobbying for the first time; they were visiting Washington, D.C. for the first time.
“We didn’t know what to expect, but it was great,” Wu said. “It is probably the best first-time D.C. experience someone can have. You are in the House; you are in the Senate building.”
And Ali was lobbying on the day she turned 27. “It felt great to be advocating on my birthday,” she said.
After the Call to Congress wound up with an address by U.S. Surgeon General Jerome Adams, the Kovler trio headed home foot-tired but happy. “It was a very positive experience,” Ali said. “I feel like we made a difference.”
Written by Barbara Brotman
Senior Assistant Director