Chances are, if you have any kind of Type 1 diabetes connection, your email inbox was flooded earlier this year with correspondence, pleas and information about the Special Diabetes Program.
Blame Jeff Kroger. And then thank him.
The Westwood resident is the government relations chair for JDRF Southwest Ohio, and one of the people responsible for the communications blitz. Washington, D.C.’s, dysfunction left him no choice.
For 20 years, Special Diabetes Program has been funding diabetes-specific research, which has led to developments such as insulin pumps, continuous glucose monitors, closed loop artificial pancreas and other technology that makes life for Type 1 diabetics more manageable. Funding is renewed every two years with a current level of $150 million per year, but was in some danger in recent budget drama.
“The interesting thing this year is, anyone who follows politics knows this wasn’t a normal year, and so we’ve had a lot of continuing resolutions, so it seemed like right before the normal budgetary cycle, September, I may be a month off, but in the very first one it looked like everything was going smooth, and then when they couldn’t settle on a budget and a continuing resolution, they did give the Special Diabetes Program a very small budget, but there’s a lot of people as they were telling us that don’t believe you should earmark money directly toward one program, so the NIH is the overseer of the spending and the money and it’s ‘Wait a minute, we’re funding the NIH at a very high level, why do you need extra money?’ kind of stuff,” Kroger said.
Congress passed a continuing resolution in September that did not include the Special Diabetes Program, which, Kroger said, has typically been rolled in with the CHIP (Children’s Health Insurance Program).
“So, in the January continuing resolution, I believe, there were four of them, so remembering which one’s which, it passed without Special Diabetes Program, and that put a lot of scare into all of us. So we’re already past our deadline of September, we’re working on 2017 money to keep going, and then that went down, so it was very, very scary,” he said.
Thus the blitz of emails, asking recipients to contact their representatives, and anyone else they know in D.C., to advocate for Special Diabetes Program funding.
The program was reauthorized in a government funding bill in February. Kroger’s work, however, goes on, as it has since his son, Jake, was diagnosed at the age of 6 in 2004.
“It turned out the JDRF office (in Kenwood) was right up the street (Kroger works at Ethicon-Endo-Surgery in Blue Ash) and kind of got involved with walks and events like that, and then in 2007 my son was chosen to be, he would have been like 9 at that point, he was chosen to be in Children’s Congress, where we go up and be an advocate for JDRF and people with Type 1 diabetes, kind of say, ‘Hey, Senators and Representatives and all that, let us know. We’re here and we want funding,’ so that’s kind of where it all started.
Kroger had minimal exposure to the disease. His wife’s sister is Type 1, as was a co-worker, who helped him diagnose his son’s symptoms.
“He (and his mother) were on a vacation and they were driving back, even as a 6-year-old, drinking a lot of water and having to stop to go to the bathroom all the time. As soon as they’d leave a rest area, he’d say ‘I have to go again.’ I had a very good friend of mine who I worked here with and discussed that who was Type 1, which was really a nice thing to have him here at work, so my son was diagnosed in July, and he helped me a lot, saying, ‘I hate to tell you, but I think that’s what it is from some of the signs.’
“So we took him to the pediatrician on that Monday saying ‘We think that’s what it is.’ And so with that diagnosis, my friend here at work was great.
“To really round out the story why I needed to get involved, my friend died almost three months to the day of my son’s diagnosis from complications of Type 1. You just realize that there are day-to-day battles, but the ultimate was is a long-term process. And so you turn out, how you’re going to feel when you’re 30, 40, 50 is how you’re winning those day-to-day battles.”
Jake is a freshman at the University of Cincinnati, studying computer science. He played volleyball, starting on varsity for three years, at La Salle High School, and was in the marching band for four years, including the last two at field commander. He marched with the La Salle band in the Rose Bowl parade two years ago.
Fourteen years ago, he was hiding in corners to avoid the regular insulin shots – as many as five or six per day.
“I guess a child’s resiliency is within a week, (he) just stood there and did it, and went on,” Kroger said.
“One point we tried really to impress upon Jake was, ‘Yes, you got this, but it’s not so bad. You can do everything you want, but let people know and go out there, and if someone is interested in seeing your pump, show it to them,” Kroger said.
Three years after diagnosis, Jake was accepted into Children’s Congress. Jeff helped with advocacy, and then took over the main job when Brenda Nienaber stepped aside.
“It’s a little different role than a lot of other chair positions with JDRF. So some times you’re working immediately on a, the gala or on the walk, and you’re helping form or walking that day. Government relations goes obviously on a government cycle. As we get newly-elected officials we’re going to try to set up meetings with anybody, the New Member Initiative, that’s called. Once a year we go to Washington, D.C., and knock on doors individually, and then every two years the advocacy program sponsors Children’s Congress.”
The learning curve was steep, and beyond anything taught in high school civics classes.
“The very first year was in 2007 when my son, for Children’s Congress. A lot to take in. There’s the, for one, just the beauty of Washington, D.C., and all of the history and everything you see, but then the learning, since we were only at it a couple of years, you think you know everything in a couple of years of helping the Type 1, the learning of what it takes in government relations to get a bill through Congress, the understanding of what’s in whose committee and moving out of committee, and getting added onto a bill and then rider programs, so smaller programs typically do not ever get voted on individually, so all of the bills get rolled together and voted on a larger bill, and all that true politics that goes on in that was a learning experience.”
A generally receptive audience made the task easier.
“Our representatives are in general very, very active in those organizations or members of, so we do get good support,” Kroger said. “The issue is as they get rolled into higher bills, potentially your representative may look and say ‘You’re only a half-percent of this whole bill. I can’t make my decision to vote on just that.’”
In his government relations position, Kroger must be able to identify the next battleground. Those include health insurance and keeping track of ongoing research.
As people with Type 1 Diabetes know, the cost of insulin has been increasing. Pointing out that “insulin is not an option,” Kroger helped promote a letter-writing campaign to insurance companies, arguing that covering insulin costs upfront is less expensive than paying for the health complications that could result later. The same tactic worked to get Medicare to cover continuous glucose monitors and the closed loop artificial pancreas.
“Which is amazing for us. There’s been the, was it last year, that Medicare was not covering the CGM. So, someone may have been on the CGM for the last five years, they turn 65, their insurance goes over to Medicare, they’re denied having this and have to pay out of pocket for it. That started being covered the middle of last year and through the advocacy of JDRF,” Kroger said.
Kroger said he spends about 10 hours a week, depending on the time of year, on his JDRF role. The Special Diabetes Program fight being over, and won, for now, he can step back a bit.
“We’ll be planning our meetings where we meet with our representatives come this late summer or fall. We’re going to try to (organize) Promise and Remember meetings, which are at the local offices with local families to come talk,” he said.
As is the case with many JDRF volunteers, Kroger became involved somewhat reluctantly, but is now fully immersed in the organization and its mission.
“Sometimes when you become a T1D parent you step out of your normal realm, and decide that you have pick up your game, or at least you know … and it’s not hard, you just have to tell your story,” he said.
Written by: Richard Maloney, JDRF Volunteer