Jim Hirsch is one of the most remarkable people in the diabetes community, if you ask us. He's a seasoned journalist who earned his chops at The New York Times and Wall Street Journal, best-selling author, and a history buff / trivia expert on topics ranging from diversity in society to baseball legends.
Diagnosed with type 1 diabetes as a teenager, Jim also happens to hail from a fabled diabetes family; his brother is the well-respected endocrinologist Dr. Irl Hirsch, known for his research in new diabetes technologies and glucose measurement methods. Jim also has a teenage son with T1D, diagnosed as a young child.
His best-known work in our pancreatically-challenged community is undoubtedly the 2006 book, Cheating Destiny: Living With Diabetes, America's Biggest Epidemic. It's a deep dive into diabetes history, myths that have long existed about this chronic condition, a personal look at what it's like living with T1D, and an eye-opening perspective on the business side of diabetes. Despite the fact that the book came out over a decade ago and so much has changed since then, his observations remain true today, and Jim continues to believe that he and his family have been able to "cheat destiny" when it comes to their health.
Tucked into the writing process for that book, interestingly, was the T1D diagnosis of his son Garrett, who was 3 years old at the time. The experience of becoming a D-Dad changed the whole narrative, he tells us.
We connected with Jim by phone recently, to hear about his personal diabetes story and achieving his writing dreams, plus his perspective and many contributions to this disease community.
A Diabetes Family Affair
Jim wasn't the first in his family to be diagnosed, as his older brother Irl got the diagnosis at age 6. The brothers grew up in St. Louis, and are four years apart in age. Jim's diagnosis came much later, when he was 15 and a sophomore in high school. He describes it as "less jarring" than it could have been because of Irl's earlier diagnosis.
The brothers were both campers and counselors at a local diabetes camp, though not overlapping because of the difference in age and their diagnosis times. But Jim says that summer D-camp experience was extremely valuable for them both, as it allowed them to learn about the condition and spend time with other T1D kids.
"It was a very different era back then, in 1977, and it was much less open in terms of people sharing that they had type 1 diabetes," he says. "You can go into any school district now and find kids with T1D, but that wasn't the case back then. We were always very fortunate because we had the resources for good medical care, had money to afford supplies and doctors, and that was all an important part of the equation too of course."
Fast forward to the early 2000s, and Jim's son Garrett -- then just 3 years old -- started displaying the classic D-symptoms (thirst, frequent urination, etc.), so Jim and his wife tested Garrett's blood sugar and diagnosed him with T1D on the spot. With the Hirsch brothers' decades of diabetes experience already under their belts, Jim says that his son's diagnosis wasn't an earth-shattering change. After all, Garrett was growing up around type 1 and seeing his dad and uncle live with it.
Garrett also went to Camp Joslin in the Boston area after his own diagnosis, for the first time when he was about 7 years old. He's now 18 and just starting college at the University of Massachusetts - Amherst. Jim describes his son (then and now) as a self-reliant and determined kid who hasn't let diabetes hold him back.
"He's been fortunate in the way that we were, in that he's had good medical care and the resources that he needs to make sure his diabetes is well taken care of," Jim says. "And of course, I'm his father and Irl is his uncle, so (Garrett's) had a lot of diabetes information available whenever he's needed it. That being said, it's still challenging for any kid to be living with type 1 diabetes."
Jim says Garrett was raised with the POV that diabetes is "just part of life." Without being a badgering parent, they do have family conversations about what works and doesn't -- sharing their personal diabetes styles and different tactics, though he notes it's more casual conversation than anything else. "A lot of it is trial and error," Jim says.
He also notes that both he and his brother were always told they could do anything, even with diabetes -- and that's something he's carried on to his own son.
"I've pretty much lived that motto," Jim says. "Not only going to college and graduate school, but traveling the world and skiing and doing all the things that you used to hear more often weren't possible."
Cheating Destiny with Diabetes?
As noted, Jim's 300-plus page book Cheating Destiny came out in 2006, and quickly became a seminal read on the topic. Not long after its release, we published a review here at DiabetesMine that noted:
"This book is clearly the result of voluminous research and dozens of interviews, and it reads like an engaging narrative of the highest order. In other words, how do you turn loads of statistics and personal testimonials about suffering from an unpleasant disease into a book so compelling it's hard to put down? Hirsch has cleverly woven together everything from the carnivalistic commercialism of the annual ADA Expo to the life of 'insulin's poster girl' Elizabeth Evans Hughes to the trials of America's leading embryonic biologist."
Talking with him now, Jim says he reflects fondly on his time writing that book and thinks it remains relevant for the community today.
"I still get emails, especially from parents, about the book because it's recommended to them," he says. "The historical context can certainly still be helpful. I feel good that while the therapies and technologies that are around today have changed since what I wrote about then, the book still has something to say today."
It was literally during the writing of that book that his son Garrett was diagnosed, and Jim ended up turning that experience into one of the most poignant and memorable chapters.
"Garrett's whole first year with diabetes became part of the narrative. It was always supposed to be a combination of history, science, and healthcare, and some biography... but also the story of diabetes from a personal point of view, a narrative about this medical condition, with the patient's voice front and center... different from a book by any medical professional that had a top-down view, as was the usual."
Revolutionary Change vs. Daily Grind
On almost every page, there was attention to the balance between progress and change in research and the industry, versus the reality of life with diabetes -- and he believes that tension still very much exists in today's context.
Looking back, Jim remembers using urine glucose testing (aka BG ChemStrips) in the early days after his diagnosis and then getting his first home glucose meter came 1981, which he took with him to college. Jim notes that the overall evolution of diabetes management and care has been huge, but home glucose testing and CGM (continuous glucose monitoring) have been the biggest game-changers -- up until now, with early closed loop systems becoming available.
"With each revolutionary change, it made the previous era of diabetes seem almost unfathomable," he says. "What we're doing right now, compared to what we were doing 10-15 years ago, is like night and day. And as we sit here talking today, we can't imagine what the next game-changing experience might be for diabetes care and what the next generations will be using in a decade or two from now. I'm not a Pollyanna by nature. I'm not one to say 'Oh, isn't this a great time to have diabetes'... but when you take the long view, that's the truth of it. Garrett's 18 now and when he's 48, how he manages his diabetes will bear no resemblance to what he's doing right now."
Are we still trying to cheat destiny, so to speak? Jim says without any hesitation: "Of course, we've improved our tools for cheating destiny, which is good... but we haven't cheated it yet."
Chronicling History, Baseball, and Diabetes Change
In his professional writing career, Jim's been a reporter for The New York Times and Wall Street Journal and has written about sports, race and culture. His first book was the best-selling Hurricane: The Miraculous Journey of Rubin Carter, focused on the boxer who was wrongfully convicted of murder and spent 20 years behind bars before his exoneration. He's also written Riot and Remembrance: The Tulsa Race War and Its Legacy, Two Souls Indivisible: The Friendship That Saved Two POWs in Vietnam, and a 2010 biography on baseball legend Willie Mays that delves into the player himself, the Negro League, and how it all played a role in the Civil Rights Movement.
Of course, Jim's also been writing and editing on diabetes for many years -- in large part, through his efforts with Close Concerns and the diaTribe Foundation. He started with the consultancy Close Concerns over a decade ago before they launched the diaTribe newsletter, and it's been an informal relationship where he's helped out on editing and writing as needed over the years.
We've been longtime fans of Jim's writing shared there, in particular the popular "Logbook" series on various topics and his more recent column about the serious issue of healthcare pricing. He's also been a big part of other diabetes efforts, including lectures on insulin use and pricing as well as the community-wide effort of moving beyond just A1C in diabetes management where he's played a part in writing and editing (via his role with the diaTribe Foundation).
"It's just one of the many great resources that exist out there now, something that wasn't the case when I was diagnosed," he says. "The idea that you could go online and get information online all the time, especially timely product and research insights, that didn't happen. Those kind of resources have helped build a sense of community. There's a group of us out here, and we may not all know each other, but we have a common baseline of knowledge and that can be very reassuring."
Jim says all this feels like a natural extension of what he's done throughout his entire career -- journalism and sharing information. Having more voices and various POVs shared within our community has been a huge and very positive change, he observes.
"Publications online have created a much better world than what we grew up in."