The shock still tickles my psyche way down deep somewhere, although it happened years ago now.
I was sitting outside my daughter’s adult endocrinology (endo) appointment (we had a tradition of going shopping and to lunch after, something I never did get insurance to cover) when she sashayed out past me and dropped this bomb:
“I’m going off my insulin pump and on to shots!”
This, just weeks before she’d head back to her college dorm, some 500 miles away, with her type 1 diabetes (T1D) in tow.
I knew right then and there: The world was ending! Things would go south. This was all bad. Danger, Will Robinson!
Except for one thing: I was completely wrong.
Our experience is one repeated in endo waiting rooms and in homes all over the United States. The idea that pumping is the best way to treat diabetes was ingrained in me, as it can be in others.
Since my child had an insulin pump for more than a decade and a half (she was actually the first young child her big-city hospital put on a pump back in the day), I was myself a pump advocate.
There was the marketing too: The shiny newness of the devices. The slick ads that made you feel like the T1D community was being heard. The (deserving) accolades as newer and cooler technology became available.
And then there was a notion that people with diabetes (PWDs) and people who support them often hear now: Multiple daily injections (MDI) are not an end, but rather a step in the process of learning to care for your diabetes.
But according to the American Diabetes Association, with nearly half of people with T1D still taking MDI, I ask myself, what’s the reality? Is pumping really superior to MDI? Are people who have pumps more advanced and guaranteed better outcomes?
Experts say this: When it comes to daily diabetes care, MDI can be just as effective as pumps.
“The choice of delivery device matters less than the effort the person puts in to their daily care,” says Dr. Stephen Ponder, Texas-based endocrinologist and author of “Sugar Surfing.”
“It’s not the device itself,” he says. “Look at it this way: A fancy car does not automatically make you a better driver. Pumps are not magical. The assumption that higher technology brings better (diabetes) outcomes is incorrect, in my humble opinion.”
He’s not alone.
“It’s a different type of attention (given to pumps versus MDI),” Dr. Elena Toschi, director of the Joslin Young Adult Clinic and the Joslin Diabetes Technology Program tells DiabetesMine.
“If you are engaged with your diabetes, you can do just as well on either (an insulin pump or shots),” she says.
There is no doubt, experts say, that there are mini tweaks and nuances with a pump that are harder to achieve (and sometimes impossible) when taking MDI.
“Pumps offer a more elegant way of extending or altering your insulin,” Ponder says.
Things like dawn phenomenon, for example, can be taken on with a pump by tweaking overnight basal rates. And microdosing, while doable when taking MDI, is easier with a pump. You also can give partial doses with a pump, or stretch out the delivery timeframe.
But Ponder says, “those bells and whistles are not a must-have.”
“I have people extremely well-managed when taking MDI and improperly managed with pumps, as well as people improperly managed when taking MDI and extremely well-managed with pumps,” he says.
There’s a fallacy, Ponder says, “that creeps into the minds not just of the diabetes world, but also the public that pumps are a kind of ‘set it and forget it’ option.”
In reality, he says, they are far from that.
“The work of daily care is part physical and part cognitive,” he says, “no matter what you use.”
“Many people have pumped for years and never use most of the options a pump offers, often because they’ve never gotten the right training,” he says.
Toschi agrees that MDI and pumps need “a different type of attention, but if you are engaged with your diabetes care, you can do just as well with either.”
“Don’t forget that new ‘smart insulin pens‘ are bringing many of these advanced features to people who prefer not to wear an insulin pump,” says Sean Saint, creator of the InPen from Companion Medical that is now part of Medtronic Diabetes. Saint also lives with T1D himself.
The advantages these connected pens offer include dose tracking, pump-like “wizard” features that help calculate doses, and integration with continuous glucose monitoring (CGM) data.
“Contrary to popular belief, pumps are not taking over.” Saint says. “You’re not a bad person if you choose not to wear an insulin pump. Pens, and now smart pens, are preferred by many people and outcomes can be just as good.”
Still, why would someone choose injections over the automation of an insulin pump? “The reasons are as unique as we are humans, and are perfectly viable and reasonable,” Ponder says.
One big obvious reason is that many folks simply don’t want to wear a device attached to their skin.
“Some people just don’t like that,” says Ponder.
There’s history here: One of JDRF’s most ardent and famous supporters, the late Mary Tyler Moore (who served as JDRF’s lead spokesman for decades) did not wear a pump, pointing to her history as a dancer and preferring sleek lines on her body.
Another reason is more basic: Affordability. Faced with either high copays or a lack of coverage for pumps, many people look at how they are doing financially and decide they don’t need to make a huge added investment in their daily care plan, since things are working for them with MDI. The average cost of an insulin pump and necessary supplies without insurance is $3,000 to $6,000.
Cassie Thompson from Texas lives in a house full of PWDs. Diagnosed with T1D herself, she also has a husband living with diabetes, and an adult son who was diagnosed 9 years ago. There’s no pump among them.
Thompson says that when her son (the first one diagnosed in the family) considered pumping, “he got his hands on the technology at a ‘learning to pump class'” they attended.
As they left the class, “he said ‘I’m good,’ to make clear that he preferred to stick with MDI,” Thomspon tells DiabetesMine.
Once she was diagnosed herself, she dug deeper into the idea of adding technology to their care, but came out feeling good about their MDI choices.
“Being a teacher, I’ve run the numbers on it, and I’m just not sure if it’s a justifiable expense if we’re all doing well,” she says.
She admits there are things she could do with a pump.
“I cannot do a temporary basal or auto-adjust, and it’s not as easy to tweak,” she says. “But I’m a science teacher, and MDI is very doable for us.”
But what about an athlete? Or a person who may take on challenging — and sometimes dangerous — adventures. Could MDI work for them?
Brendan Black in California has and still does just that.
Diagnosed 28 years ago at 10 years old, Black, now a father of two, started taking injections back when NPH and R insulins were standard therapies, and shifted to pumping in high school and beyond. But he shifted back to MDI as a young adult.
Through those years, he became an adept and brave hiker and climber, taking on multi-day treks, often alone, through the Sierra Nevada and on challenging ranges in places like Ecuador, often backpacking for many days all by himself.
For him, MDI still works.
“The pump was just pretty awkward for me,” he tells DiabetesMine. “The system made me uncomfortable, and being super active, things like impact really made it challenging.”
He lives a healthy and active life taking MDI, he says.
He did get pushback from his endocrinologist, he says, who stressed the pump’s ability to let you zoom in on super small doses (and therefore, achieve possible tighter control). “In theory, that is true,” Black says, “but even with that, I’d still be hesitant. I realized that it’s best for me to use (the tool) I am most comfortable using.”
Claire Lamsfuss in Texas was diagnosed with T1D as a small child in 2005, 16 years ago. She once pondered pumping, but, she says, “It was too expensive and I was hesitant anyway.”
Her mother backed her decision to keep taking MDI, something Lamsfuss. believes may have helped her overcome a strong bout of burnout she fought as a teen.
“Being on long-acting insulin was absolutely the right thing then,” she says. “I think It’s the one thing that kept me out of DKA (diabetic ketoacidosis). I was struggling, yes. But I made sure to at least do that shot of long-acting insulin every day.”
Past that burnout now, she’s still happy and doing well, she says, using pens for MDI.
“Everyone’s different,” she says of her choice. “There are so many options. We don’t all need to be shoved in the same category. That’s the beauty of choice.”
What of the decision when it’s a parent and child involved in the care?
Pamela Rivera of Florida knows that feeling.
When her daughter was diagnosed at 9 years old, they started out with her taking MDI (as most do). But early on, as she perused diabetes parent Facebook groups, Rivera felt pressure to consider pumping.
“These parents are like, ‘you have to have (technology), it will save their lives!’ and I’m here to say it can be done with shots. We do it, and she’s thriving. I wish more parents knew that managing diabetes can be done well without hardware.”
At first, she says, she felt the pressure and researched. But expense was an immediate and obvious issue. She felt guilty about letting cost stand in the way, but when she approached her daughter about it, she was surprised.
“She said she didn’t want anything attached to her body,” Rivera says. “She didn’t want the beeping and the rest of it either.”
That sealed the deal.
“It’s her body and her choice,” Rivera says of her daughter. “The social, emotional and mental health piece of all this is just as important.”
Lynn Reinke, Claire’s mom, says she felt strongly that it was her job as a parent to give her child the choice, despite the pressure she felt from the diabetes parent community at large.
“There are what I call the ‘microaggressions.’ They always use the word ‘still,’ as in, ‘oh, so she’s still taking shots?’ as if MDI is just some practice step on your way to good control. Time after time, it’s an assumption people make,” she tells DiabetesMine.
As a mom, she admits, she did wish at one point Claire would pump, and she got her hands on some samples to try to lure Claire. But Claire held firm, so mom did too.
“People would say ‘well you are the parent. You should tell her what she has to do!’ to which I still say, ‘well, no. Because she deserves to have body autonomy,’” she says.
Reinke largely ignores those voices now, but still has one that irks her: advertising.
“It makes me want to stab them,” she says of many diabetes technology ads. “They get on TV and say, ‘you won’t’ be healthy without this!’ and ‘Fight to get this!’ The combination of that and the online chatter can be toxic.”
“It’s like the old battle about breast versus bottle,” she says. “These parents (who have their kids pumping) are almost evangelical about the pump.”
Black says he’s thankful his mother never pressures him to make another choice, and as a parent himself now, he hopes others do the same.
“Since the child is the person with diabetes, they should have some primacy in deciding,” he says. “It’s a really important part of the calculation. The child’s wants should be a strong part of these decisions.”
So, what of the newer closed loop systems? Those, Rivera says, bring a whole new level of questioning why someone would not want to use one.
But Ponder points out that those systems require training, attention, and added work, and can be ineffective if not used properly.
“I can show you two graphs, one with a super straight line and one that’s all over the place, and ask you to guess which is the (hybrid-closed loop) graph. In this case, the straight line is the MDI because the person is doing what they must,” Ponder says.
In other words, even a smarter pump needs input and thought.
As for me, my child is nearly 30 years old now. She uses a pump and takes MDI. She’s healthy, happy, and doing her best to live in harmony with her diabetes and her busy life.
Secretly, I’d love her to be on a hybrid closed loop. But I’m also the person who has to buy anything that has “New!” stamped on it. More important than that, though, I’ve learned through her: It’s not the tool, it’s the effort.