Katie Savin was 12 years old when she found out she had insulin-dependent diabetes mellitus, also known as juvenile or type 1 diabetes. The diagnosis changed her life significantly and, in a sense, planted the seeds of her future journey into social work. “My interaction with a social worker as a child diabetic made a profound impression on me,” said Savin, undergraduate class of 2010. She became interested in advocacy work, and after beginning her studies at NYU in the Gallatin School, she transferred to the Silver School of Social Work last year.
Juvenile diabetes is a very high-maintenance disease that requires around-the-clock attention. Further, given the relative rarity of type 1 diabetes, young adults with the disease often feel stigmatized and become isolated. While their peers’ struggles may center on romantic partner- ship or planning a family, this population is more likely to be focused on managing their health and trying to keep up with their healthier peers.
Although Savin is at the beginning of her social work career, she has made a significant impact on the lives of young women in the community of type 1 diabetics in New York City. After learning that there were no active support groups in the area for young adults with type 1 diabetes, she got to work launching her own. Adults with type 1 diabetes—which accounts for only about 10 percent of all diabetes diagnoses—are a small and underserved group, Savin noted. “Juvenile diabetics grow up,” she said. “Psychosocial support systems exist primarily for children living with the condition, and when they outgrow these systems, they find themselves without support.”
Savin began her efforts by floating the idea of a New York City–area support group to diabetes bloggers. Encouraged by the positive feedback she received, she sought advice from her social work professors at NYU, including Adjunct Lecturer Laudy Burgos, Assistant Professor Allison Werner-Lin, and Assistant Dean Dina Rosenfeld. She consults regularly with Professor Martha Gabriel on aspects of facilitating a self-help support group. Her first challenge was finding space; she contacted the endocrinology departments of several hospitals in the city asking for a place for the group to meet. “A number of hospitals turned me down, saying that young adults don’t go to support groups. Others told me that they didn’t have the resources,” Savin said. Fortunately, Beth Israel Medical Center had recently opened a diabetes center, the Gerald J. Friedman Diabetes Institute, and was interested in community outreach. The institute offered a conference room for the twice-monthly meetings of the fledgling group, called the Support Group for Young Women with Diabetes.
The mission of the Support Group for Young Women with Diabetes is to provide a place for young women with type 1 diabetes to help one another through information sharing and a sense of belonging to a community. Savin told the Newsletter that many young female diabetics feel alone and may lack support and access to necessary medical treatment and supplies. “Women with type 1 diabetes have a much higher risk of developing eating disorders than the general population, often a combination of the medical need to constantly monitor food intake and exercise and of equating food intake with guilt,” she said. The potential for life-threatening complications from pregnancy is also a major concern specific to young women with the disease, and group members report doctors discouraging them from having children.
Today Savin’s group at the institute is growing, and she continues to receive inquiries at least weekly. Several members of the group have joined her to organize a start- up organization called ACT 1, or Adults Coping with Type 1 Diabetes. In the past few months alone, ACT 1 has added a second support group for men and women to accommodate an increasing demand and has created free programming such as yoga classes for diabetics and support networks for family members and caregivers.
Moving forward, ACT 1 has a number of significant goals that aim to address the many inequities and deficiencies in the systems affecting the daily lives of adults living with diabetes. Savin notes that in our current privatized health care system, many adults with diabetes find themselves un- or underinsured. The difficulty of getting health insurance coverage with a serious preexisting condition, compounded by the high costs of medical care and prescriptions, often leaves adults unable to get the treatment and supplies they desperately need. Savin and the members of ACT 1 hope to address these issues by seeking funding to provide services to diabetics at no cost. The organization plans to start a diabetes supply exchange program, a center with free mental health and social services, and disability- and health care-related legal counseling.