An Open Letter to The National Institute of Diabetes and Digestive and Kidney Disease (NIDDK)

Dear committee members of The National Institute of Diabetes and Digestive and Kidney Disease,

I am Heather Gabel, student researcher at University of Illinois at Chicago, diabetes advocate and fellow, and blogger in the diabetes online community. I would like to thank the committee for hearing my perspective of the funding structure and policy of the National Institute for Diabetes and Digestive and Kidney Disease (NIDDK) and what the American Diabetes Association is doing to confront the problem of inadequate psychosocial care and treatment for people living with diabetes. I write to you today, committed through professional and personal experience, driven by an impassioned need for change for the diabetes community. I believe that change starts where knowledge is produced: in the labs and research centers working tirelessly to reduce the burden of diabetes.

Diabetes has been called an epidemic in the United States. Nearly 30 million people have been diagnosed and 81 million either prediabetic or undiagnosed, making up just over 29% of the population. The media, the public, and doctors alike see diabetes as a killer; a killer of the economy, a killer of people, a killer of life as you know it. Diabetes is the thing your family member doesn’t take care of. It’s the little voice in your head telling you not to eat an unhealthy meal. Diabetes is the joke no one laughs at anymore. Diabetes is linked with obesity, kidney disease, and many other terrifying complications. Because diagnosis rates are still rising and the costs associated with its maintenance and care continue to skyrocket, billions of dollars have been thrown at curative research and the development of technologies and therapies to reduce those costly complications of poorly-managed diabetes. What is even more striking, is that despite all of the funding, which is estimated at about 1 billion dollars in 2016 alone, 15 million of the 30 million diagnosed do not meet even the basic health outcome goals set forth by the American Diabetes Association. I’ll repeat that again. Fifty-percent of all people living with diabetes in the United States are considered non-compliant. And I will be the first to admit that I am among them.

I was diagnosed with diabetes when I was eleven years old. I have worn an insulin pump for 10 of my 15 years, and been on injections the other five. I have checked my blood glucose over 33,000 times. I’ve seen my endocrinologist 4-8 times per year since diagnosis. I spend about 8,000 hours per year self-managing my diabetes. And, I have been wearing a continuous glucose monitor for the last three years. I am here to tell you that all of this is not enough. I, like the other fourteen-million nine-hundred ninety-nine thousand, nine-hundred ninety-nine people with diabetes not meeting basic health outcomes in the United States, do not have the things I need to be healthy.

You see, managing diabetes doesn’t end after the finger stick and the injection. Conversely, my own experience leads me to believe it doesn’t even start there. Diabetes management is about more than the medical procedures; it is about balancing the psychological and social nature of living with a disease that requires eight-thousand hours of self-management per year. Diabetes is about navigating relationships jeopardized by the irritability that comes with elevated blood glucose. It is about accepting the forever of it all. Diabetes is about preparing for every meal, every walk around the block, every trip to the grocery store, every day at work with precise tools and backup plans. The problem in the United States is that our health care system largely fails to recognize these psychosocial elements of diabetes at all. Diabetes is a complex disease treated with only with simple solutions.

On November 22, 2016, the American Diabetes Association released a position statement to address the staggering rate of sub-optimal health outcomes in the diabetic population. They argue that diabetes “management cannot be successful unless lifestyle and emotional status of the individual is taken into consideration”. The position statement, geared toward providers, pushes for a more complex plan for diabetes care and treatment. It urges practitioners to focus on the psychosocial elements of diabetes in their practice. I’m thankful to the American Diabetes Association for releasing this pivotal position statement. They are the first major diabetes organization in the United States to do so. With that said, addressing solely providers does not quite go the distance. Because research on the psychosocial elements of diabetes has only gone so far as to demonstrate that there is a substantial unmet need within the diabetic population, solution-based treatment plans have yet to be developed. The American Diabetes Association is going to begin training providers to identify diabetes-related psychosocial problems in their patients, but because there are no evidence-based treatments specific to diabetes, their training will stop there. If providers are able to identify but not treat a psychosocial problem, the problem persists. People with diabetes will continue to not get the things they need to be healthy.

This is why it is so important to begin shifting the focus of diabetes research toward psychosocial interventions, therapies, programs, and services. Given the complex nature of diabetes, and evidence demonstrating the development of psychosocial problems resulting from it (such as diabetes distress, anxiety, disordered eating), we need this shift to lean toward solution-based research. We need to look for and test a multitude of programs and supports with the potential to reduce the psychosocial burden of diabetes. Perhaps if we can identify solutions to the psychosocial problems, we will be able to live in a country where a higher percentage of people with diabetes meet basic health outcome goals. Perhaps we can even live in a country where people with diabetes are able to thrive just as any other American would.

We have to start creating a system of care that provides what is needed. I believe we can do this by pivoting the research priorities at the National Institute for Diabetes and Digestive and Kidney Disease toward solution-based psychosocial therapies. I ask the committee to consider forming a new tier of research dedicated to this work. There are several community organizations like the Diabetes Collective Inc., DiabetesSisters, Diabetes Hands Foundation, and College Diabetes Network, who have generated and continue to provide psychosocial services to people with diabetes in the U.S. Their collective service-base is in the millions. Leaders of the these organizations, namely, Christel Marchand-Aprigliano, Anna Norton, Gene Kunde, and Christina Roth respectively, are eager to partner with researchers examining psychosocial problems. The capacity is there. The community is willing and able.

We must make this shift because diabetes is not the thing your family member doesn’t take care of. It is the thing they need help with. Diabetes is only a killer when we fail to discover alternative therapies and supports for those impacted by it. Diabetes is not a disease easily managed. It is a complicated, messy chronic illness that interferes in every life experience. We have a responsibility to discover innovative interventions and therapies for the 15 million people living with diabetes in the United States, myself included, whom are being failed by the current medical system despite everyone’s best efforts. We have a responsibility to extend our research beyond the bounds of finger sticks, injections, and the like. We have a responsibility to generate the evidence-based research needed to adequately train providers to move beyond identification of a problem and toward the delivery of a solution. The National Institute of Diabetes and Digestive and Kidney Disease, as a generator of knowledge, has a responsibility to field diabetes-specific psychosocial research. As a person with diabetes, I implore each committee member to consider the potential impact doing so could have on people with diabetes in the United States.

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