At the first annual Young Adult Diabetes Day held at the Bronx Zoo in early August, 21-year-old Angela Coco enthusiastically showed off the new Dexcom continuous glucose monitor (CGM) that she wore on her upper arm. The small wireless device sends data to an App on her iPhone, replacing her bulky glucometer, and provides the Wellesley graduate with a “newfound freedom.” It also gives peace of mind to her mom, Dorothy, who can use her smartphone to check Angela’s glucose levels once she’s a law student at the University of Michigan this fall.

The mother and daughter team were among the two-dozen young adults with Type 1 Diabetes (T1D) and their caregivers who turned out for the event to discuss the challenges of living with diabetes, learn about management strategies and new technologies, and share a sense of camaraderie with others affected by the chronic disease.

Shivani Agarwal, M.D., M.P.H.Faculty ProfileResearch Profile

“We want young adults with diabetes to live full lives,” said Shivani Agarwal, M.D., M.P.H., director of the Supporting Emerging Adults with Diabetes (SEAD) program and Assistant Professor of Medicine (Endocrinology), in welcoming the attendees. “We want you to know that you are in the driver’s seat.”

Navigating a Tricky Transition

For young adults with T1D, graduating from a pediatric to adult doctor can be a tricky transition.

Dr. Agarwal created the newly established SEAD program at the Fleischer Institute for Diabetes and Metabolism to help support her patients through this difficult time.

“The transition from pediatric to adult care is a challenging time,” said Dr. Agarwal. “Young adults have specific needs, in both their developmental transition to adulthood and their health transition, and most adult diabetes programs are not trained to support them.”

Prior to joining Einstein in 2018, Dr. Agarwal developed and directed a successful pediatric-to-adult diabetes program at the University of Pennsylvania. She came to Einstein with NIH-funded research to study racial disparities in transition and help support underserved young adults with T1D with innovative clinical programming.

"We were very excited to recruit her to Einstein,” said Dr. Jill Crandall, Chief, Division of Endocrinology and the Jacob A. and Jeanne E. Barkey Chair in Medicine. “Dr. Agarwal's work in health disparities is consistent with Einstein’s social justice mission and makes a great addition to the translational research portfolio of the Center for Diabetes Translation Research.”

Dr. Agarwal opened the clinic in the Bronx within weeks of her arrival and now has about 50 patients, ages 18 to 35, on board. Most referrals come from the Children’s Hospital at Montefiore. Attuned to the sensitivities of this age group, she makes sure that all who enter the clinic get a warm welcome. “They’re nervous, miss their old doctor, and really don’t want to be here,” Dr. Agarwal said, noting that the clinicians even abstain from wearing their white coats, which can be intimidating.

During their first hour-long visit, Dr. Agarwal allows the patient and their family plenty of time to talk. Next, she finds out about their history, needs, and barriers to attaining good control. Then comes goal-setting: “I ask, what are your three goals in life and three goals for your diabetes?” she said. “They set the timeline. So, it’s about establishing trust and letting them steer the ship.”

Dr. Agarwal was so successful at U Penn that some patients drive from there to the Bronx to keep appointments with the diabetes doctor they came to love.

Rising to the Challenges

In T1D, the body does not produce insulin. With the help of insulin therapy and other treatments, however, even young children can learn to manage their condition and live long, healthy lives. But there is no cure. T1D-associated conditions pose special challenges for young adults. For example, uncontrolled diabetes is a risk factor for congenital abnormalities in newborns, so in pregnancy, HbA1c needs tighter management—6 percent as compared to 7 for nonpregnant diabetics, said Dr. Agarwal. Diabetes is also a risk factor for kidney failure, heart disease, and strokes. Added to these medical challenges are the social needs of patients.

How do Dr. Agarwal and her team address such issues? “We screen!” she said. That team includes a diabetes dietician and T1D-specialist nurse practitioner Michael Greenberg. A psychologist and a caseworker will soon join them. The program has opened a Tarrytown location within Montefiore’s Immunologic Diseases Center of Westchester, which will operate until 2020, when it moves to its new location in Elmsford, NY. The Center’s specialties include allergy, gastroenterology, pulmonary medicine, rheumatology, dermatology, and endocrinology.

Dr. Agarwal’s programs have a solid foundation in research. Her studies have found wide variation in transition care for young adults with T1D and have documented her program's promise. Another study concluded that though variables such as family conflict or low food access are associated with glycemic control, significant predictors of A1c are race and insulin regimen: Caucasians had better control than other racial groups, and insulin pumps yielded better control than pre-mixed and basal-bolus insulin. Other studies support her findings. Her research continues thanks in part to a five-year, $988,000 grant from the National Institute of Diabetes and Digestive and Kidney Diseases, to address health disparities in minority disadvantaged young adults with T1D. She has more grants pending.

At the Bronx Zoo event, patients and caregivers split up into groups; Dr. Agarwal led a roundtable discussion for the young adults living with diabetes while Michael Greenberg led a group for family members to discuss the challenges of caring for their loved ones.

Attendees continued their conversation over a healthy, sugar-free buffet lunch.

“Dr. Agarwal is always so present and goes out of her way for us,” said Angela Coco. “Diabetes is scary. Having a support group like this helps you learn from others that diabetes doesn’t have to control you and you don’t have to feel so alone.”