How I Educated the US Surgeon General about Diabetes After His Controversial Tweet

Written by Quinn Nystrom

A few weeks ago, I was slogging through some clerical work in my home office. Tedious stuff. Needed a break. I logged into Twitter, scrolled through my feed, and came across this tweet from the US Surgeon General Jerome M. Adams, MD, MPH.



My visceral reaction was best summed up by the red-faced angry emoji. You see, I travel the country talking to groups about what life with diabetes is like. On multiple occasions, during events on the road, someone in attendance inevitably asks a question that infers that I was diagnosed with diabetes because I’m overweight.

This, of course, is a misnomer: I was diagnosed with type 1 diabetes during my youth and I would’ve been diagnosed whether I’d been 90 pounds or 290 pounds. It was just a crappy genetic roll of the dice I was on the wrong end of.

Happens to many people. But—and I’m assuming here—most don’t have to navigate their plight while being told (from audience members, sure, but also friends, the media, and, of course, the Twittersphere) that, in essence, they were responsible for creating the disease.

Why the red-faced emoji reaction? Imagine if the public had the misconception that you get cancer because you don’t exercise enough. Imagine you’re diagnosed with cancer. Imagine, a week later, having lunch with a friend who says: “It just sucks that you didn't exercise more. This could have been avoided.” You’re not looking for pity, but dang— you’re not wanting to defend yourself from an incorrect supposition either. What would you do in that situation? I’ll tell you what you’d do: You’d say nothing. You’d swallow it. Because it’s not worth risking your relationship by responding how that feeling in your gut wants you to respond.

And after you’ve swallowed so many responses—or, perhaps, navigated that tricky conversational terrain and found, in the end, that your friend has left the table with the same misconception she arrived with—you’d start to get rather frustrated. Hence, my reaction.


 

My tweet was just one of many responses from the diabetes community. The next day, Dr. Adams apologized. He also removed the original tweet from the Surgeon General feed.



I appreciated the response. Sensing an opportunity to further the dialogue, I also responded to this tweet. This story has been pretty straightforward to this point. Man in Power writes poorly-worded tweet that could be read as perpetuating the stigma he purported to want to end. Small Town Diabetes Advocate and the diabetes community at large respond. Man in Power apologizes. Tweet is removed. 

A Sincere Apology  

But that’s not where this story ends. No— the US Surgeon General responded to my tweet!


Ten days go by, and I more or less forgot about the interaction. To my surprise, Dr. Adams had not. This is where the story gets pretty neat: I received a call from one of his assistants. The US Surgeon General wanted to set up a phone call. He was taking me up on my offer to have a phone call!

We scheduled the call for the following week, Tuesday at 9 am. I received an email from Dr. Adams’ adviser that morning, asking if we could bump the appointment to 10. I moved an appointment up an hour. To my surprise, during that appointment, at roughly 9:40 am, the phone rang. Dr. Adams was at the airport. His adviser asked if I could take the call right then.  

“Of course,” I said, racing to my car. For the past week, I had been working on a Word Doc that included all the questions I wanted to ask him. My job, first and foremost, is as a diabetes advocate. To get a call from the US Surgeon General—to have his undivided attention—was enormous. I wanted to be prepared. But now, I was furiously trying to open my silver Chrysler 200 to take the call in the privacy of my car. I would have to do without my notes!

Dr. Adams took the line: “Hi Quinn, I’m Dr. Jerome Adams. I really appreciate you taking the call today.”

“Of course,” I respond.

I need to start off by saying that I’m really sorry if in any way that tweet stigmatized those with Type 1 diabetes,” he said. “My heart was broken when I was reading through the responses to my original tweet. It was a poorly worded tweet— I was intending to make a point about de-stigmatizing diabetes, and I instead further stigmatized those with diabetes. That wasn’t my intention, and I’m very sorry.

I told him that I was surprised that he had taken me up on my offer. Dr. Adams told me that he was impressed that I responded without being derogatory. He felt like taking me up on the call would be constructive, and that I wouldn’t lash out in anger. On that account, he was right. Dr. Adams wanted to have a conversation with a person with diabetes about what life with diabetes was like. I’d spent the last 20 years

of my life hoping to have that exact conversation with somebody in his position. I could have cried.

As a child,” Dr. Adams said, “I suffered from a chronic form of severe asthma. I was removed from school almost every month to deal with it. I don’t know what it’s like to live with Type 1 diabetes. But I do know what it’s like to not be the normal kid on the playground, to have a condition that can’t be cured, to have to carry supplies everywhere in case catastrophe strikes (in his case, an inhaler).”

I’m not perfect,” Dr. Adams said. I wish you’d been on that call with us to hear how sincere he sounded in that moment. He had a boyish voice, a warm voice. He wasn’t a smooth talker—he was something better. He was genuine, almost sweet. This was a man who wanted to help, to help in whatever way he could. He was a man who sometimes didn’t know how to go about that. And my gosh was that touching; I knew the feeling too well. “That tweet… this situation… it allowed me reflect,” he said.

"How Can I Help?" 

Next, he asked me how I’ve been stigmatized because of having type 1 diabetes. “What can my office do to improve the dialogue and the situation of all people with diabetes?

“The most challenging aspect of type 1 diabetes is insulin affordability,” I said. “We cannot live without insulin. And when a person with diabetes can’t afford his or her insulin, that person has unwittingly entered a very dangerous area. If we skimp on insulin, if we don’t have access to insulin, our bodies shut down. We die. It is the single most important issue. It’s more important than stigmas, more important than tweets or words, more important to us than anything in the entire world: Staying Alive.”

If I had had my computer with me, I would have cited the recent Yale study that found that one in four people with diabetes in the US admitted to cutting back on insulin because of cost. One in four! Twenty-five percent of my brothers and sisters were quite literally in what I thought of as a certain kill zone: If their situation didn’t improve post-haste, each could die of diabetes complications—or be beset by complications that made their medical situation all the worse.

If you don’t have enough insulin, your blood sugar rises like the tide, which forces ketones into the bloodstream. That’s called ketoacidosis. You get thirsty. Your eyes go blurry. You begin cramping everywhere. Your thoughts become foggy. You want to sleep. You want to let go. From there, it’s pretty straightforward: You get insulin, or you die. To a person with diabetes, insulin is oxygen. It’s water to a fish. It is not optional. If insulin were eradicated from the world tomorrow, the world’s diabetics would be wiped off the planet in very short order.

The Human Cost of the High Cost of Insulin

I did remember this nugget because it was the single most important thing I could have told him: “Insulin has increased 1200% in the 20 years that Humalog has been released,” I said. “That's right—1200 %!— There are no generic options available in the United States. If the cost doesn’t come down, people will die. This isn’t an optional thing: We must find a solution right now. I’ve had friends with diabetes die because they couldn’t afford insulin. They aren’t statistics to me. They are people who should still be here who aren’t because of poor government policies and pharmaceutical greed that have backed them into a corner where they didn’t have much of an option except to wither when the money ran out.”

He wasn’t surprised. He said: “I’m glad to hear you bring that up personally. I’ve heard about that issue at a very high level. To hear that come from a person who talks to thousands of people with diabetes, that gives the important issue even more weight. I’m going to bring your story, and your concern over the issue, to the Department of Health and Human Services.

Canada offers insulin for a fraction what it sells for in the United States, I said. Norwegians pay only 10 % of US prices. Not surprisingly, Norwegians have significantly lower A1C levels than we do here in the United States. This was not, I said, a coincidence.

“I’m committed to addressing the current insulin costs,” Dr. Adams said. He promised me that he would pass along my concerns and stories to the Health and Human Service Secretary Alex Azar.

Then, Dr. Adams thanked me. He reiterated that he wanted to work on ending the stigmas for those affected with a chronic illness.

I hung up. Sitting in my car, just staring out into the parking lot, amazed at what had just transpired, a quote about leadership by Craig Groeschel popped into my head: “Be humble. Be yourself. People would rather follow a leader who is always real than one who is always right.”

US Surgeon General Dr. Jerome Adams is that. He isn’t a drone. He’s a human. He wants to do right. He tries really hard. Sometimes, he makes mistakes. And when he does, he tries to make it right.

I quite like him, I have to admit. There’s only one more thing I can ask of Dr. Adams: Do the same for insulin affordability. That's a mistake that isn't his. But skyrocketing costs of insulin is a mistake nonetheless. We wouldn't leave a brother or sister to die when it could be prevented, but that's what our country is increasingly doing to this at-risk population I happen to be a part of. I left that call thinking we’d found another advocate for our cause.

Friends, I pray my intuition is right!