Hope, Reality + the Search for a Cure for Type 1 Diabetes

If you’ve lived with type 1 diabetes (T1D) for any amount of time, you’ve probably heard it a hundred times: “A cure is just around the corner.”

For decades, those words have inspired hope, fueled research, and, at times, have led to disappointment and cynicism. Today, however, the conversation feels and looks different.

Nearly every week brings news of another breakthrough:

• Stem cell therapies
• Islet cell replacement surgeries
• Encapsulation devices
• Gene editing tools
• New clinical trials enrolling and curing people all around the world

For the first time in my life, it really feels as if we’re seeing progress in real time on multiple fronts.

And yet, despite all that excitement, I still have to count carbohydrates for lunch. I still have to put myself in “activity mode” for a walk to check my mail, and I’m still dealing with pump failures and sensor errors on my devices too often. My failed pancreas doesn’t know or seem to care about another promising study published in JAMA this week.

All of this has brought me to an emotionally exhausting place: optimistic about the long-term prognosis and potential curative options for myself and millions of others living with T1D, but also weirdly anxious and frustrated that the discoveries aren’t hitting closer to home or helping with my blood glucose in the here and now.

Living with T1D requires near-constant, present-tense attention, while the promise of a cure still lies in the future. Holding those two realities at the same time isn’t always easy, so it’s no surprise that people are responding to it in very different ways. There are typically three camps of people, and how they’re responding in this weird in-between time is quite telling.

The hopeful 

This group eagerly follows every research update. They know the names of biotech companies developing cell therapies (and maybe even name their dogs after them: “Come here, Sana!”).

They celebrate every successful phase of a clinical trial and know the difference between phase 1 and phase 3 research.

Hope is incredibly powerful. It reminds us that today’s treatments are better than yesterday’s and that tomorrow’s could be even better. Hope inspires advocacy, fundraising and participation in research that concretely moves the science forward. Hope gets a lot of us out of bed each day, even when our blood glucose is high.

The challenge, it seems, is when hope starts growing expectations. Every clinical trial failure feels personal and the setbacks hurt more than they should, when in reality, research rarely moves in a straight line. Clinical trials can and do take years.

I fall into this camp myself, and it’s important to remind myself that it’s good to be optimistic, but I also need to recognize that scientific progress takes time.

The skeptical

Other people have lived with T1D so long, and have heard all the promises of a cure before, and they’ve largely stopped believing them. Many of these people have lived with diabetes for many decades and remember hearing countless announcements for cures in mice, which never translated into everyday reality.

People in this camp have learned to protect themselves from disappointment by approaching every breakthrough with a healthy dose of skepticism.

This can be a healthy way to approach the chatter of a cure, because it’s good to look beyond the headlines with a critical eye. Not every promising new therapy will succeed and not every clinical trial will turn into a curative option in the near future.

As long as the skepticism doesn’t turn into cynicism: many of the breakthroughs today were unimaginable even ten years ago. It is possible to remain realistic while acknowledging that today’s scientific landscape is unlike anything we’ve seen before. And that is exciting.

The disengaged

Finally, there is the group of people who simply don’t pay attention anymore. It’s not that this group doesn’t care about a cure. Managing T1D takes so much mental and physical space in their life that it is all encompassing, and they don’t have room to engage with talk of a cure.

When the day-to-day with diabetes and decisions over insulin, food, exercise, sleep, stress and technology take up 99% of your headspace, reading another article about a potential treatment for T1D can be overwhelming.

Sometimes the healthiest choice is to simply focus on today’s blood glucose instead of tomorrow’s breakthroughs, and that’s okay, too. Sometimes people do this simply to protect their mental health over everything else; it doesn’t mean they have given up on a cure.

Sometimes living well with diabetes means giving yourself permission to step away from the constant stream of news, especially when you need a break.

Making room for both hope and reality

As I was skimming my Google alerts this morning on gene editing advancements, my pod failed, and it reminded me to stay grounded in the present moment. That maybe there’s room to be made for both hope and reality.

Maybe I can read about and celebrate the advancements without expecting them to be Prime delivered to my front porch overnight. It is possible to be excited about the future (and even envious of clinical trial participants) while also acknowledging that maybe I’m just a little bit burned out. It’s a reminder that in the here and now, I can make adjustments to my routine and therapies without wishing for a miracle.

I can be amped about stem cell therapy while messaging my healthcare provider (HCP) about a new insulin I wish to try.

I can learn all about encapsulation devices while testing out the newest flavor of no-sugar Catalina Crunch.

There is room for both.

Moving research forward

What I’ve found most helpful is taking my hopefulness (and anxiousness) and applying it in productive places.

For the truthiest truth is that we’re enjoying advancements today based on scientific research that was done decades before we were even diagnosed (have you ever seen what the first insulin pump looked like?).

Behind every new therapy are individuals who choose to participate in research, often without knowing whether they would ever personally benefit, and how amazing is that?

Clinical trials aren’t for everyone, and participating always involves careful consideration with your healthcare team. But if you’ve ever wondered where you can put your energy, curiosity or hopefulness towards a cure, clinical trials are a great place to start—especially if you’re part of an underrepresented community.

What to do:

• If you have a family member with T1D, consider learning about TrialNet, which offers free risk screening for eligible relatives and is conducting studies aimed at delaying or preventing T1D before symptoms even begin.
• If you’re already living with T1D, ask your healthcare provider about research opportunities or explore studies currently recruiting participants through ClinicalTrials.gov. New studies are evaluating everything from beta cell replacement and immune therapies to next-generation diabetes technologies and researchers continue to need volunteers.
• Write to your members of Congress and demand more funding for research for the cure. If your elected officials don’t hear from you, they will hear from someone else, asking for money to research a different condition. Research funding at the National Institutes of Health (NIH) and the Centers for Disease Control and Prevention (CDC) are made and voted on by members of Congress who rely on stories from constituents about what research would mean to them. It is so important that they hear from you. 

The future of T1D will be written by scientists, researchers, advocates, doctors and people living with this condition all working together. Until that day comes, we will keep doing what we do best: guesstimating our carbs and believing, hoping and knowing that better days are ahead. 

If you have a family member living with T1D, learning your own risk is one of the most concrete steps you can take while research moves forward. Get screened through Beyond Type 1’s Early Detection Screening program.