Diabetes is an epidemic in the United States, affecting nearly 10 percent of the population or about 29 million people, according to the Centers for Disease Control and Prevention. Of those, more than 8 million people are undiagnosed.
Though more media attention in recent years has focused on individuals suffering from the Type 2 diabetes which occurs with an increase in obesity and sedentary behavior, millions are affected by Type 1 diabetes — previously called juvenile diabetes — which can happen to children or adults. It’s an autoimmune disease in which a person’s pancreas stops producing insulin, a hormone people need to convert food to energy.
Children with Type 1 diabetes, their parents and other health care officials met Monday morning in St. Petersburg on the 4th floor of Synovus Bank with Pinellas County Congressman Charlie Crist.
The meeting was to provide Crist with more information about the ailment, and how he needs to fund and support the Special Diabetes Program (SDP), which provides $150 million annually for research at the National Institutes of Health (NIH).
The meeting was set up by members of the Tampa Bay chapter of Juvenile Diabetes Research and Advocacy (JDRF).
Advocates secured a two-year commitment of $300 million for SDP in 2015, but that funding is scheduled to expire in October.
President Donald Trump is proposing approximately $5.8 billion in cuts to the NIH budget, a request received coolly by members of Congress, including Crist. That proposal comes after Congress added $2 billion to the NIH over the past two years, after about a dozen years without a substantial increase.
“It’s so compelling to listen to your individual stories about how this has affected you, and how strongly you feel about the need for research and that it must continue,” Crist said toward the end of the hourlong event. “You don’t have to sell me. I’m already there.”
Emmabella Rudd, 16, was one of several teens and preteens who told Crist about her experiences as someone with Type 1 diabetes. She was five years old, losing weight and drinking an excessive amount of water when her parents had her diagnosed.
“We didn’t know what was wrong,” Rudd said, adding how there is now much better information about the disease. “My mom thought I was maybe going through a growth spurt or something like that.”
Since then, Emmabella’s mother Tricia Rudd has become a full-on advocate of government funding for the ailment. She feared a cut in funding would hamper the various clinical trials going on for Type 1 diabetes.
Since the Special Diabetes Program was instituted in 1997, Florida has received $554 million, the most funding of any state in the nation.
While listening attentively to all of the 18 different people assembled around a U-shaped table who told their stories, Crist became energized when hearing from one internationally based family about their different experiences paying for a dose of insulin for their son when living in different countries.
Steve and Emma Given lived in the United Kingdom but moved to the U.S. in 2001 for a job, relocated to Australia in 2008, and returned back to the states in 2011. Because a bottle of insulin costs approximately $380 (which lasts about 20 days), Steve Given says he restocks supplies for his son Connor when visiting his sister in Ireland, who also has two boys with Type 1 diabetes.
When asked why he needed to go to Ireland to pay for insulin, Given said: “We can get is so much cheaper over there than here.”
Emma Given pointed out that in the U.K., Connor’s prescriptions were free under the national health care system up to the age of 16. In Australia, the medication under their “hybrid” national health care system — which mixes public and private dollars — was also free, though families help pay for the system through taxes.
“You pay what you can, but the community takes care of it,” Steve Given said about the Australian system. “Whereas here if you have a certain level of income, you’re expected to be able to afford that yourself.”
Crist’s Monday meeting with the local JFRF chapter was his second. Since their first encounter, Crist said he joined the Congressional Diabetes Caucus, prompting a spontaneous round of applause from those in attendance.
“These people take their time to talk to members of Congress, and it gives us the opportunity to be educated by them,” Crist said after the meeting. “That’s how democracy is supposed to work. It’s wonderful.”
The House of Representatives is scheduled to take off the entire month of August, meaning they are left with just four weeks to pass the fiscal year 2018 budget, which includes funding for the Special Diabetes Program.