Diabetes Awareness Month is celebrated every November to raise awareness of diabetes and its health effects.
We’re celebrating this milestone by sharing the perspective of a type 1 diabetic patient. Kristy Birchard, a patient advocate who also works in the research industry, is dedicated to bringing the voice of patients into clinical trials. She was diagnosed as having type 1 diabetes when she was three years old. Read her thoughts below.
Type 1 diabetes: the patient’s perspective
Is it true that the cure for Type 1 Diabetes is “only five year away”? No clinical trials without recruitment.
In the last seven years, it has been my privilege to cultivate a career that is dedicated to embedding meaningful and equitable patient involvement in clinical studies. This work is a passion of mine. When I was three years old, my Type 1 Diabetes (T1D) was diagnosed. This is an incurable disease that requires constant glucose and insulin management. Diabetes is a difficult disease to deal with — mentally, physically, emotionally, and socially. Many people who have diabetes feel alone and isolated as they struggle.
I gave a presentation about my experiences as a type one diabetic at a screening earlier this year of the documentary The Human Trial, directed by Lisa Hepner, a fellow diabetic. This documentary focused on three participants who were part of a T1D trial. It highlighted their struggle with the disease and their motivation for participating. I told Lisa I felt “a warm hug” because I was the first person to see my reality accurately and holistically on screen. She beautifully captured not only the shared experience of this disease but also our complex relationship with hope. We laughed hysterically at the (informal) statement made by diabetes specialists: “The cure is only five years away.” Why did we laugh? In the 1990s, they told us this. We are closer to finding a cure than ever before, but many of us have lost faith in the research community because of a lack of transparency.
The human trial helped the audience understand what researchers are working on. Lisa asked important questions for patients – some of which, unfortunately, have no answers. These conversations were healing and transformative, and they made a compelling argument that tensions between patients with T1D and the biomedical field need to be repaired urgently.
Researchers can’t make progress unless they recruit more people to clinical trials. The Juvenile Diabetes Research Fund reports that there is a shortage of T1D patients for clinical trials. Around 20,000 people are required to participate.
Understanding where our outreach efforts fail to reach out to the community is key to recruiting for clinical trials. In the 30+ years that I’ve been living with diabetes, I have never met an endocrinologist to discuss clinical trials, nor have I seen any educational materials about clinical trials in an office… but I have heard that the cure could be just around the bend. I have only learned about clinical trials through my advocacy and professional experience. Viewing The Human Trial was the main influence on me to search for clinical trials online independently independently.
In addition to this, the US T1D community has a long-standing tense relationship with big pharma. Insulin remains unaffordable for many. Health equity is a serious issue. We are facing significant financial challenges, and many of us have been killed by insulin rationing. The amount of challenges we face with this diagnosis is exhausting. We need a cure, but who will support us until then? I don’t think we will reach our recruitment goals for clinical trials or get closer to treatment until there’s a major effort to relieve patient stress and facilitate meaningful communications between diabetics researchers.
Search tools for clinical trials like Antidote can help bridge the communication gap between researchers and patients. After watching the documentary, I immediately searched for clinical trials and found Antidote’s extensive T1D database. Finding trials in which I could participate was intuitive, easy, and accessible. Although I couldn’t find a trial near me, the information and opportunities it provided were invaluable. I now know that I can sign up for Antidote’s email updates or check the database regularly to find out what researchers are researching and if I am eligible to take part.
The T1D field is at a critical point in its research. I am grateful for tools such as Antidote, which will empower patients to find clinical trials and take matters into their own hands when they are ready. They can also connect them with research sites. These tools will repair the relationship between researchers and patients and speed up the cure for type I diabetes.
