March 13, 2024
As spring rises throughout much of the United States, we take time to reflect on the vital importance of a Practical Cure, and the resilience of those waiting for it. Thirteen years of sentiment research within the T1D community shows that nothing is more important to the people battling the disease day in and day out than a functional, practical, cure for T1D. Although we are closer now than ever before in history to achieving it, we still have much more to do and a long road ahead. If we are to see a solution within the next decade, we must solidify the importance of a clearly defined Practical Cure and see a paradigm shift in how research dollars are allocated and measured for impact.
A Practical Cure Is Not a Perfect Cure
A Practical Cure for T1D, sometimes referred to as a ‘Functional’ cure, is any solution that minimizes the symptoms and risks of T1D, allowing for a normal quality of life without worry and constant management. Imagine no longer needing to wear a CGM and pump, no regular finger pricks throughout the day, no carb counting, no calculated insulin injections, and no anxiety about long-term health risks. This would be a Practical Cure.
In practical terms, this solution could be an outpatient procedure such as cell replacement, an oral medication, genetic re-engineering such as CRISPR, or even a minuscule implantable device. Many of these solutions are being developed; only a few are in human testing.
A Practical Cure differs from a perfect cure in that it does not seek to fully reverse or remove the disease. It accepts that some regular intervention may be required, but the disruptions associated with T1D are largely removed. As a result, a fully-developed Practical Cure can arrive much sooner than a perfect one, which remains as elusive today as it was 100 years ago when Banting and Best developed insulin.
The Definition of a Practical Cure Was Chosen by People with T1D
This definition was developed through research conducted in the T1D community. We asked people with T1D and their immediate family members what they believe is a cure and what is not a cure. Although respondents would welcome a perfect cure, they are equally satisfied with a practical/functional one, and they want it as soon as possible. Their answers shaped the definition of a Practical Cure.
A Practical Cure Is the Top Priority and We Really Want to Give It Money
Twice a year over the past thirteen years, we have distributed a survey to understand the values and priorities of the T1D community—people living with T1D, family members, and fundraising volunteers. In every survey, an average of 96 out of every 100 people in our community say that funding a Practical/Functional Cure is their top priority.
Last week, we published the most recent survey results collected from respondents in late February of 2024. The results were consistent: funding a Practical Cure is Job #1. We asked survey participants if they believed funding cure research should be the top priority for diabetes charities, and we were met with a resounding 98% “Yes.” In addition, survey takers were asked if they would give money to a Practical Cure initiative if that option was made available and the vast majority, 92%, said “Yes.”
Yet, Only 13 out of 627 T1D Human Trials Target a Practical Cure
Why is such a small percentage of active research focused on a Practical Cure when it is the number one priority of the community?
This is the fundamental question.
In the twelve years we have been tracking human trials, this low percentage remains unchanged, year after year. There are some bright spots, such as the number of active human trials testing stem cell-derived beta cells (sBCs). Last fall was the first time that four different trials were evaluating different applications of sBCs, a good thing, and an essential part of a Practical Cure.
But still, it is only four.
At the same time, the major diabetes nonprofits raise hundreds of millions of dollars a year and are experimenting with exciting alternative funding models such as venture philanthropy. Why isn’t more of this money going to drive, push, and demand faster progress in sustainable cell supply and cell protection? Where is the concentrated effort? If our leaders take their foot off the gas, how will we have any chance for a cure in our lifetime?
A Paradigm Shift Is Needed
The generosity of people affected by T1D is a powerful force that drives hundreds of millions of dollars to T1D organizations every year. The appreciation that people feel for those trying to ease our suffering is earned and warranted, but it also forestalls an expectation for accountability. Most of us give. Only a few ask how the money will be used. Even fewer ask how the money given twelve months ago was used, and what results it delivered.
Goals and objectives are not uniform across the T1D research ecosystem. Some researchers are seeking to be published, others want to make a lot of money, and others want tenure. There is no common definition of a cure that most scientists rally around. What one researches depends on the professional environment.
But what if a Practical/Functional Cure was adopted as the central goal of T1D researchers? What if annual milestones toward this goal were adopted and rewarded? The first change this would bring is direct alignment with the priorities of T1D financial supporters, resulting in renewed fundraising. The second change would be a concentrated focus on the essential task of developing a cure, rather than the scattered and wide approach that is at play today. This would bring faster results—perhaps much faster. The third change is that with clear annual milestone metrics toward a single goal, there would be higher accountability for real performance toward a cure.
This is the paradigm shift we need.
We Can Do More
If you are one of the many holding out hope that there will be a cure in the near future, your hope is not misplaced, but your actions may be. You, the T1D donor, are the most vital part of the T1D research ecosystem. Your voice is the most powerful instrument to bring attention and focus to T1D cure research.
As you plan your charitable giving this year, we implore you to speak up. Don’t give and go. Tell your local diabetes nonprofit chapter heads, executives, and boards of directors that you want your donation to fund Practical Cure research. Attach a comment or send an email along with your gift stating how the donation should be used, and the nonprofit will be obligated to use your donation how you intend.
Thank you for taking the time to reflect with us. Together, we can achieve a Practical Cure for T1D.
