In 1983, a trial began that would forever alter the standard of management of type 1 diabetes (T1D) and serve as a stepping stone to future research advances—and as we mark the 30th anniversary of the trial’s inception, we are still learning from the study.

The Diabetes Control and Complications Trial (DCCT), a 10-year multicenter clinical trial, studied 1,441 people with T1D for an average of 6.5 years each, to examine whether intensive versus conventional methods of blood-glucose control could affect one’s development of dangerous diabetes complications. In 1993, staggering results from the trial proved that intensive therapy—where participants kept their HbA1c levels as close to normal as possible through frequent monitoring and insulin injections—reduces the risk of complications such as diabetic kidney, eye, and nerve disease by 35-76 percent, compared with what was then considered conventional treatment of one or two insulin injections daily and one urine or blood glucose test per day.

The DCCT is credited for spurring a change in the way diabetes is managed. But its effects did not end there. Most of the participants of the DCCT volunteered for the follow-up study beginning in 1994, called the Epidemiology of Diabetes Interventions and Complications (EDIC) study. This subsequent research has continued to uncover insights that could impact people with T1D today.

In 2002-2003, EDIC researchers determined that the period of intensive glucose control during the DCCT continued to reduce the risk of microvascular complications 7-8 years later, despite comparable glucose control between the two groups of participants after the initial study. Coined “metabolic memory,” this phenomenon suggests that implementing intensive glucose control as early as possible could help reduce the risk of complications down the line.

In 2005, EDIC researchers reported another interesting statistic: DCCT participants who had undergone intensive treatment during the study had fewer than half the number of cardiovascular complications compared with those treated conventionally, throughout an average of 17 years since their enrollment in the DCCT. For the first time, research showed that intensive glucose control could have long-term benefits for reducing heart attacks, strokes, and cardiovascular-related death in people with T1D.

New insights into hypoglycemia and the genetics of diabetes complications are also forming from the base of data that the DCCT study provided 30 years ago. These studies and future ones highlight the importance of a strong investment in long-term research—an investment that has been made possible through funding from organizations like JDRF, and with governmental support through the Special Diabetes Program (SDP), which makes up roughly one-third of U.S. government support for T1D research.

As advocates of T1D research, we can help protect and increase critical funding through JDRF and the SDP, so that long-term studies have the resources needed to continue revealing information that could improve and save lives. In addition to advocacy, people with T1D and their families can help research advance by participating in clinical trials. For more information, visit the JDRF Clinical Trials Connection website: https://trials.jdrf.org/patient/.

JDRF recently brought together a group of 20 leading experts in the behavioral and mental health fields to discuss the range of psychological and social issues experienced by people with type 1 diabetes (T1D) and their families.  Forums like this enable JDRF to stay up-to-date with the full spectrum of issues faced by people with T1D so we can better represent their needs in everything we do and improve JDRF-developed materials and resources and practical information about living with T1D.  JDRF is indebted to Chip Halverson, JDRF board of chancellors’ member and parent of a daughter with T1D, who championed this effort and provided the financial support for the event. JDRF board member Nicole Johnson who has T1D and is an international diabetes consultant, advocate, and researcher of the psychosocial aspects of diabetes provided valuable guidance during the organization of the meeting. Both Chip and Nicole participated in the meeting sharing their personal insights with the other attendees.

It’s not news to anyone with T1D or with a family member who has T1D that this disease presents a number of unique challenges unlike those seen with other chronic diseases. Many of the unique challenges of T1D result in important outcomes that go beyond blood glucose control – they extend to a variety of psychosocial and quality-of-life issues affecting individuals and their families.  Some of the factors that make T1D management unique among chronic diseases include: an intensive 24/7 regimen of blood-glucose management, the often non-private nature of testing and injections and using devices, the required attention to meal planning, food-related issues, and body weight, and the imprecise connection between blood-glucose management actions and the desired level of control. Because of these unique challenges, studies have shown that among chronic diseases, T1D has one of the lowest rates of individuals complying with their disease management plans. One study reported that 88% of HIV patients stay on their disease management plan – a high among chronic diseases – and that T1D patients were among the lowest at only 67% staying on plan.

The experts discussed how the unique aspects of T1D management result in a number of well-documented psychosocial burdens and quality-of-life issues. These issues affect everyone living with the disease, especially children with T1D and their parents, and adolescents and young adults. Reports of psychosocial issues range from mild symptoms to diagnosed psychiatric disorders. These may include; stress and distress, feelings of helplessness, anger, exhaustion, or embarrassment, disruptive behaviors, family conflict, eating disorders, substance abuse, anxiety, and depression. Milder symptoms are not as well-documented, but healthcare providers reported in a survey that 10-30% of children and adolescents with T1D experienced mild psychosocial symptoms.  Multiple studies provide documentation of psychiatric disorders in people with T1D. Of particular concern, one study found that two-thirds of adolescents with poor T1D management also experienced psychosocial issues, providing evidence of the critical negative impact these issues can have on an individual’s management of the disease. 

Numerous insights were shared about the reasons why psychosocial, mental health, and quality-of-life issues often receive limited attention during the routine care visits of people with T1D.  The most fundamental reason noted was the limited coverage for behavioral and mental health care in the United States. Interventions to address the psychosocial burdens experienced by people with T1D add time to a healthcare provider visit and require resources that are not routinely reimbursed without a clinical diagnosis by a specialist. The experts also noted a lack of enough trained healthcare professionals to diagnosis and manage the psychosocial issues associated with T1D. This includes primary care physicians and endocrinologists who provide the routine care of people with T1D—and are most likely to observe such issues. The experts identified multiple interventions for psychosocial issues in T1D that are known to provide positive outcomes but are just not widely available due to the limited resources in the healthcare system to support their implementation. 

Beginning a dialogue on this important, but little discussed, aspect of T1D is a first step for JDRF. These insights will help JDRF evaluate where we can use this information to better support all the needs of everyone with T1D and those affected by the disease.

In order to prevent and ultimately achieve a world without type 1 diabetes (T1D), we must first learn more about the disease.  One trend that has revealed itself in recent years is an accelerating rate of T1D, especially among younger children.  Last year, the SEARCH for Diabetes in Youth study reported that the prevalence of T1D in people under age 20 in the U.S. rose by 23 percent between 2001 and 2009.  Other studies have shown that in European children one to five years of age, the incidence of T1D is increasing at a rate of 5.4 percent annually.

This increase in T1D creates additional urgency for research to understand and ultimately prevent and cure the disease.  It also speaks to the need for more studies to gather data about T1D incidence rates and how they’re changing over time.

With that in mind, new research from the Philadelphia Pediatric Diabetes Registry revealed the incidence of type 1 diabetes among  children in Philadelphia under age 5 increased by 70 percent in the past two decades.  Furthermore, the study found overall T1D incidence in the city’s children up to age 14, increased by 29 percent from 1985 to 2004 (the average yearly rate of increase was 1.5 percent).  The research, led by Dr. Terri H. Lipman of the University of Pennsylvania School of Nursing, draws upon data from the only active U.S. diabetes registry, which Dr. Lipman has maintained since 1985. 

While Dr. Lipman’s findings published in the recent issue of Diabetes Care, shed insight on the rising rate of diabetes in children in Philadelphia, they also highlight the importance of diabetes data centers in the U.S. and throughout the world.   According to Dr. Lipman, improving and continuing research and data collection will help clarify the origins and epidemiology of these upward trends in pediatric diabetes.   This knowledge will lead to a better understanding of T1D and will inform work to prevent and cure the disease.

Although JDRF did not fund this particular study, part of JDRF’s strategy is to drive research aimed at slowing and preventing the progression of T1D.  As part of the program’s top priority areas, JDRF supports research studies following people over time who have, or are at risk of developing T1D to better characterize the disease process. JDRF’s recent News Blog entry, T1D Rise Among Youth Highlights the Importance of Renewed Research Funding shares an overview on such JDRF-funded prevention studies, including:

• SEARCH for Diabetes in Youth study
• The Environmental Determinants of Diabetes in the Young (TEDDY)
• Type 1 Diabetes TrialNet

When JDRF started the Artificial Pancreas Project in 2006, the project was long on theoretical concepts but short on hard data.  Scientists believed there should be a way to improve daily T1D management by connecting the reading from a continuous glucose sensor to control the operations of an insulin pump in a closed loop system – but the tools to do these experiments were limited and the path was unclear.

A few short years later, this area of T1D research, which aims to remove some of the impact of T1D from people’s lives by reducing dangerous high and low blood sugar levels and the complications that may result, has gone from  a theory to a reality in widespread clinical testing.  Not only are researchers continuing to refine this developing technology with the goal of eventually making it available to all people with T1D, but dozens of people with T1D have had the opportunity to test an artificial pancreas system by participating in human clinical trials.

The earliest artificial pancreas system trials focused on testing devices in a closely monitored setting to ensure patient safety.   These trial participants stayed in a hospital for the trial duration and were followed closely by a medical team.  The first rounds of trials showed promising results, but because the trials took place in hospitals, it was too early to conclude that an artificial pancreas system would be helpful with blood sugar management in a "real-world" setting, where people with T1D may face unpredictable circumstances and choices that can impact their glucose levels.

Last summer, JDRF announced a significant step forward in the development of artificial pancreas systems – ongoing clinical trials showed that artificial pancreas technology was proving successful in outpatient, more "real-world" settings.  Study results released at the 72nd American Diabetes Association (ADA) Scientific Sessions revealed that participants in ongoing trials at international sites in France and Italy were able to use an artificial pancreas system for 18 hours outside of a hospital setting, while keeping good control of their blood sugar levels.

This past fall, JDRF had the unique opportunity to film the experiences of an artificial pancreas clinical trial participant at the University of Virginia.  Tom Brobson, JDRF’s National Director of Research Investment Opportunities, was diagnosed with type 1 diabetes in 2004 and joined JDRF as a staff member shortly after that.

According to Tom, "Being diagnosed with T1D at age 44 felt like part of my life was being taken away - becoming involved with JDRF was like getting it all back."

Participating in clinical trials was another way that Tom could make a difference and help to advance T1D research.  In 2007, he began participating in artificial pancreas clinical trials and returned in 2009 and again in 2012.

"I participate in clinical trials because I want to see a whole progression of advances leave the laboratory and become life-changing therapies for those of us with T1D."

Tom's third experience being connected to a functioning artificial pancreas system was quite different than the two previous times.

"In 2007," Tom explains, "I was in a hospital bed with wires running all over the place.  We had to have two laptops running the software, my doctor had to check every single step the system wanted to make, and I couldn’t leave the room.  By 2009, things had progressed, everything sort of fit into a fanny pack, there were still wires, but fewer of them, and I could walk around the hospital a bit – I even got on an exercise bike.  The laptops were still running things but they were out of sight in a different room connecting via a wireless signal.  All of this was needed because in these first attempts safety was paramount.  It still is, of course, but in 2012, the laptops were gone and the system was running on a smartphone!  This time, we left the hospital and went into the real world for three days." 

As part of the 2012 trial, Tom was able to walk around town and eat out at restaurants to test how the device would function in situations that people with T1D face on a daily basis.  

In the video below, you’ll see Tom’s portable smartphone artificial pancreas system in action and learn more about how JDRF has managed to efficiently accelerate this groundbreaking technology in just a few years.

(Please visit the site to view this video)

If you are interested in participating in a clinical trial, please visit JDRF’s Type 1 Diabetes Clinical Trials Connection at http://trials.jdrf.org. This is a service that provides information and matches people with T1D clinical trials for which they may be an appropriate participant. You can also find more information on artificial pancreas trials through the website of the JDRF Artificial Pancreas Consortium: http://jdrfconsortium.jaeb.org.

Living with type 1 diabetes (T1D), to say the least, is no cake walk.  Let’s be honest, it’s downright tiring and absolutely challenging sometimes.  Despite this truth, and in the face of nearly impossible obstacles, people with T1D still do amazing things.  And their accomplishments inspire everyone connected to JDRF to no end!

For example, Yahoo sports recently posted a story on Chicago Bears quarterback Jay Cutler.  Jay, after being diagnosed with T1D over four years ago and in the midst of his NFL career, has taken it upon himself to raise money for T1D and also work directly with children living with the disease – all while still playing!  Another recent news story focused on a woman in New Zealand, Winsome Johnston, who has lived with T1D for 78 years.  Other people living with T1D who also have significant years of diabetes management under their belt know just how incredible an achievement this is.  And speaking of milestones in a person’s life and others who are inspiring, 13-year-old Matthew Sherr recently raised more than $90,000 for JDRF by donating gifts from his bar mitzvah.  Great job, Matthew, and congratulations on proving that it’s possible for a person with T1D to make a big difference at any age!

On a personal note, I’m quite proud of some of my recent accomplishments as a person living with T1D for over 19 years, including a hard-earned belt promotion in Brazilian Jiu Jitsu and graduating from a 500 hour yoga teacher training course.

So, if you’re reading this, and you are someone living with T1D, or you care greatly for someone living with it, JDRF has a number of forums where you can share your story and what you’ve accomplished while living with this unique challenge. 

• Tell us Who’s your #1?  This page on the JDRF website gives you an opportunity to talk about those with T1D you're most passionate about.
• Sign up for TypeOneNation, JDRF’s online community for people touched by T1D.
• Tweet to JDRF and share on Facebook.
• Connect with others through your local Chapter of JDRF.

Finally, continue to spread awareness, support T1D research, and keep trying to do good things while dealing with this difficult hand that’s been dealt.  Your story, like Jay Cutler’s, Winsome Johnston’s and Matthew Sherr’s, helps inspire others and keeps this sometimes seemingly impossible course ahead navigable.