Diabetes education means A LOT to those of us living with this disease every day. But it wasn’t always available — or even a twinkle in a patient’s eye, back in the day.
One of the folks we have to thank for establishing diabetes education as a real field is R. Keith Campbell, a veteran type 1 himself who was one of the “founding fathers” of the American Association of Diabetes Educators (AADE), the leading D-education org that’s now been around for 40 years.
Back in 1973, Keith was a founding member and early leader of that organization.
Now, in his 65th year of living with type 1, Keith is starting the next chapter of his life. Today marks his last day of teaching at the College of Pharmacy at Washington State University, culminating a 45-year career at the school where he’s risen to fame as the “go-to guy” on all topics of diabetes and pharmacy. He plans to stay on as an emeritus professor there, but hasn’t yet decided what’s next in his career.
“To be blunt, I haven’t figured that out yet,” he told me by phone a few weeks ago. “All I know is there’s a lot of work left in the diabetes and pharmacy fields, and there are a whole lot of new exciting drugs and treatments on the horizon, so I plan to keep my hand in things as much as possible.”
From my end, I so appreciate having an expert like Keith who “gets it” and is able to bring his own personal history with type 1 into D-education and other professional fields. I had heard vaguely of Keith before — about how he was diagnosed at age 8 and has been known for many decades now as an important man in the field of diabetes education. But I had no idea how interesting his D-story really is until reading his autobiographical chapter in My Sweet Life: Successful Men with Diabetes. Amy ran into him at the latest AADE meeting in August, and we just knew we had to share a profile of him with our readers! (Also, it’s a great kick-off to National Diabetes Awareness Month).
A fun fact we discovered on historical dates is that Keith first went on an insulin pump on Feb. 1, 1979 — the very day I was born, and just about five years before I’d get my own type 1 diagnosis handed to me as a five-year-old… How about that!
For Keith, that was just about the mid-point of his life with diabetes at the time, and insulin pumps were new and novel and just being developed. He used the Minimed pump, which he’s been on now for more than 34 years. He actually keeps detailed count, telling me it’s been just about 34 years and 10 months exactly.
“I remember being more excited than nervous, but yes I was both,” he said about starting on the pump. “It seems so intelligent to copy what goes on physically in the body for insulin delivery, but just not easy — and back then the pumps were so big and bulky and you had to dilute insulins. Still, it was an exciting time to be at the forefront of that.”
Keith was one of two PWDs who went on a pump that day. And they were told to eat as much as they could, including going to Baskin Robbins 31 Flavors to try all the ice cream varieties to see if they could keep blood sugars below 140 mg/dL (!) It worked, and looking back Keith says it’s one of the most vivid memories of his entire life with diabetes.
Now, more than three decades later, Keith hasn’t taken a day off his insulin pump and wouldn’t think about changing his D-management routine, he says. Of course, he also laughs at the instructions he got “back then,” with all new pumpers being told they had to eat massive amounts of food to keep sugar levels under control; many initial pumpers ended up gaining around 25 pounds within the first two years.
These days, Keith says he’s tried other diabetes devices and technology, but sticks with his insulin pump. He’s used a continuous glucose monitor (CGM) off and on through the years, and still does for brief periods of time, but often sees the data as being overwhelming and more of a burden than a help.
“It’s just too much information, in my opinion, and it’s not that accurate. While it does give you good trends, it’s alarming all the time and you have to test and calibrate so often… so really, it’s more work than I see worth it for me.”
When Keith started teaching in 1968, he says he started a file about all the new research, including the first document that announced some new discovery that could lead to a cure within five years. That file grew to be about three feet thick over the years, and yet we haven’t hit a cure, but Keith remains optimistic.
He had worked for a few years as a pharmacist after graduating from Washington State with a pharmacy degree, and went on to become a clinical professor there who helped start the college’s clinical pharmacy program. That program was a new concept at the time, allowing pharmacists to get “patient-orientated” training rather than product-specific training. That’s been a highlight of his professional diabetes career, Keith says, in helping to educate people about how to help fellow PWDs. He’s also written more than 700 papers and contributed to countless books — including one he wrote in December 2008, called Medications for the Treatment of Diabetes that’s become a resource for many in the field to understand the real patient-focused benefits of these drugs.
So, what led to helping found the AADE? Keith says many of his diabetes educator colleagues started seeing a need after attending the American Diabetes Association (ADA) Scientific Sessions, and observing that the patient and even educator voice was limited in favor of the physician focus.
“At the time, the attitude in healthcare was that the doctor was God, and you did what they said or else,” Keith says. “So after going to those meetings, I came home feeling that the role of educators and nurses and pharmacists was really downplayed. We were there, but there wasn’t any organization and we didn’t get recognized. At the time, there was just no mention of the role of the patient in taking care of his or her diabetes, and nothing at all about educating the patient. I felt involved as a person with diabetes, but remember feeling left out as a healthcare provider. And I wasn’t the only one.”
About 18 educators got together after an October 1973 meeting, talking about how the ADA didn’t plan to have a focus on diabetes education. Keith says he and the meeting organizer, head of a newspaper-like publication called Diabetes In The News, were the only two men in the room. The AADE grew out of that gathering, with the first annual meeting happening the following year in 1974 with about 250 people attending.
A lot has obviously changed through the years — thankfully! — and the advances in diabetes technology from newer insulins to wireless glucose meters — have revolutionized D-Care in Keith’s opinion.
It was fascinating to hear Keith talk about what a “diabetes news junkie” he is. For years, he’s spent at least two hours a day perusing general interest D-stories, medical journals and the latest research updates to see what’s happening. And being the teacher that he is, Keith has then translated that diabetes science into ways that PWDs can help themselves or HCPs can help their patients.
Of course, he still has frustrations about how the field operates. He says the recent healthcare debates and budget-focused talks in the research community illustrate this.
“Throughout our history, a common theme has always been getting reimbursement and recognition for educators,” he said.
“One of the biggest frustrations I’ve had during my entire career has been that what’s best for healthcare and patients is often funded by groups that are only looking at ways to save money — not ways to spend money effectively, practically or safely. Too often, the left hand doesn’t know what the right hand is doing.”
— Keith Campbell, on 40 years of fighting for support of Diabetes Education
Keith hopes to see before long a better process for allowing educators to make a living on diabetes education, but he’s not sure how that will happen if the reimbursement system doesn’t improve. He says more CDEs (certified diabetes educators) are moving from clinical practice to the corporate side, and he wonders what will come from that transition. Will CDEs not get funded if they’re not working for or with a company? That can make educators nervous, he said.
He’s also observed a battle between doctors, nurses and even certified educators thinking that pharmacists or dieticians don’t bring anything to the healthcare team, he says.
Bottom line, in Keith’s opinion: we need to develop innovative ways to get people educated, and to make sure that educators can stay on as a key part of every PWD’s team.
As to his own diabetes, Keith says he couldn’t be happier with where he is. He was told that he’d be blind by 30 and dead by 40, and so he’s long since passed those old-school medical predictions.
“I’ve lived a couple lifetimes, and so I’m happy to have beaten the odds. The whole field and the research is pretty exciting, even if it does move slowly. I’m convinced they are going to find a cure the day after I die. But, at least we’ll finally have one.”
Thanks for everything you’ve done through the years, Keith. We look forward to seeing you around at future conferences, and if there’s any new medicine or treatment news that perks our interest, we’ll definitely reach out to get your take on it.