A Turning Point in Complex Care

Sometime last winter, I realized that it had been over a year since I'd seen my 18-year-old patient, and I was worried. I'll call her Tonya for confidentiality. The last time I'd seen her, Tonya was living in a car, struggling with food insecurity and had lost her smartphone.

Those things would be hard for anyone, but Tonya was also coping with depression, anxiety, PTSD and type one diabetes that had landed her in the hospital 12 times in 2020 in diabetic ketoacidosis. Every episode of ketoacidosis caused a metabolic injury that increased her risk for coma and even death.

It was heartbreaking because these episodes could have been prevented if Tonya had not been missing her insulin. Here's the thing. I knew that Tonya was smart and resilient. She was using a blood glucose meter and taking insulin by injection. I knew that she was doing the best that she could.

And I knew that our medical system was doing the best that it could for her. She had a primary care provider, an endocrinologist, a public health nurse, and a social worker. Yet despite all our support, we still had those 12 hospitalizations. It felt like we were failing.

Fortunately, we had a solution for Tonya and her name is Gabrielle. Gabrielle is an interventionist in our brand-new program called Novel Interventions in Children's Healthcare or NICH. NICH, which is 100% funded through philanthropy, was created to provide proactive support to youth with complex medical conditions who also experience significant life challenges leading to poor health and acute complications.

Changing Young Lives

NICH interventionists provide three major kinds of support. First, skills training and coaching for patients and their families. Second, care coordination between medical providers, the youth and family. And third, intensive case management, helping patients and families access resources like housing and transportation.

Right now, we have four interventionists. They're available by phone or text around-the-clock. And they're conducting weekly visits to the patient's home, community, school and medical settings. Their constant presence helps build the daily routines and medical regimens that are so crucial for patients with diabetes, like Tonya, and supports these young people with appointment reminders, skill building and problem solving. This is where we see real change happening.

NICH was started in 2011 at Oregon Health and Science University. Their data show that in the year prior to NICH, 83% of youth enrolled had an admission for diabetic ketoacidosis, but while they were working with the NICH interventionists, that number dropped by half. The NICH program was keeping them out of the hospital. It was helping them avoid those metabolic injuries.

There were other improvements as well. On average, kids enrolled in NICH had a 1% lower hemoglobin A1C. Now 1% may not sound like that much, but for every 1% change in hemoglobin A1C, you can decrease your risk for diabetes complications by up to 40%.

And it's not just patients that benefit either. Medicaid claims data show a cost savings of $30,000 per patient per year. In addition, there's reduced provider burnout and improved provider satisfaction. For doctors like me, seeing tangible improvements in my patients is what really keeps us going.

One Patient’s Progress

We launched NICH at UCSF in 2021, and Tonya was enrolled in February. In just six months working with Gabrielle, she found a home, connected to community food resources and established care with a new therapist.

I know all this because thanks to NICH, Tonya attended her first clinic visit with me in a year. It truly made my day. And she also attended her next two clinic visits and is using a continuous glucose monitor that shares data with our healthcare team.

In the six months after enrolling in NICH, she has been admitted four times in diabetic ketoacidosis. That's still a lot, but it's a big improvement over the previous year. And I'm happy to say that her hemoglobin A1C has come down 1.1%.

This summer, Tonya graduated high school and enrolled in community college. She joined the diabetes camp as a counselor over the summer and aspires to become a therapist. She still has challenges. But when I see how she's improving with the support of NICH, I feel proud. I feel proud of us. I feel proud of her.

My clinical work depends on my ability to accurately diagnose diseases and prescribe effective treatment plans. I know that the systemic problems that undermine those plans are profound, but now with NICH, I truly believe that we can provide lifesaving care.

Dr. Alison Reed is a Clinical Associate Professor in the UCSF Division of Pediatric Endocrinology. NICH – which provides round-the-clock support for young people facing complex medical and personal challenges – is funded entirely by philanthropy.