In 2020, the Centers for Disease Control and Prevention recorded that approximately 10.5% of the total population in the United States was living with diabetes.¹Type 1 diabetes accounts for roughly 5-10% of these cases and results from the body’s inability to produce insulin, the hormone needed for controlling blood glucose levels.²Type 1 diabetes can have onset as early as birth, with the average age at the time of diagnosis around 13 or 14 years old.²For Amy Johnson, a physician and Dermatology Clinical Trials Fellow at University Hospitals – Cleveland, her journey with type 1 diabetes began when she was only 12 years old. Managing diabetes at a young age is difficult for many, and as Amy became more aware of the nutrition and exercise changes required to manage her disease, she also realized the importance of personal responsibility for her own health. Amy’s battle with diabetes has allowed her to empathize with others as they face obstacles in their lives and helped her realize that her words and actions can potentially improve the lives of others with type 1 diabetes.

Amy is now an advocate for those living with type 1 diabetes, as she is actively involved with the American Diabetes Association (ADA) and she maintains working relationships with local, state, and federal legislators to communicate the needs of patients, providers, and families in the type 1 diabetes community. Amy has been a champion of several policy changes, including pushing for federal dollar allocation to diabetes research as well as convincing local legislators to reduce the practice of tanning bed usage by minors. For Amy, instances like these have given her a sense of empowerment to use her voice as a diabetes patient and has made her passionate about legislative advocacy. “[It] motivates me to continue to use my knowledge and lived experiences in this way,” she says. Amy hopes to keep legislators informed on the needs of the diabetes community with the goal of having a positive impact on healthcare policy. She also hopes that she may one day become a legislator herself.

Amy learned about the Congressionally Directed Medical Research Programs through her father, David Johnson, who served as a consumer reviewer on the Fiscal Year 2018 (FY18) Peer Reviewed Medical Research Program (PRMRP) Peer Review Panel. As a PRMRP consumer reviewer, David drew on his personal experiences as a parent of a child with type 1 diabetes. He shared with Amy how fulfilling it was to have a voice when it came to the process of funding impactful research. Now that she is involved with clinical research in dermatology, Amy is familiar with application review and funding processes, and she joined the PRMRP Peer Review Panel in FY20. Given her personal experience with type 1 diabetes as well as her career as a physician, she has been able to propel research applications forward that are not only innovative and scientifically rigorous, but also impactful for the diabetes community. While Amy believes the diabetes research community is very committed to understanding the pathogenesis and manifestation of the disease, she believes it is also important to improve the quality of life of patients. Amy asserts that the diabetes topic area will remain ripe for more research contributions, given its prevalence in the U.S. population, as well as its effects on multiple organ systems and implications from wound care to autoimmunity.

As she continues her journey with type 1 diabetes, Amy is able to enjoy her life while still managing her disease. Her hobbies include weightlifting, hot yoga, cultivating unusual edible plants such as the Habanada heatless habanero pepper, and English horseback riding. Amy also mentors high school students as they continue their education to undergraduate schooling. Referring to her experiences as a member of the ADA, legislative advocate, and PRMRP peer reviewer, Amy says, “Greater exploration of advocacy niches through wider participation leads to more transformative power.”

References:

¹ https://www.cdc.gov/diabetes/data/statistics-report/index.html

² https://www.cdc.gov/diabetes/basics/quick-facts.html

³ https://www.cdc.gov/diabetes/basics/diabetes-type-1-diagnosis.html