Everything's an Experiment


For the last 4 years, I've been working with UCSF's Project ECHO in the role of Outreach Liaison. My job has been to travel to 13 counties identified in Northern California as having high hepatitis C (HCV) disease burden and minimal infrastructure to treat it. I've been able to accomplish this goal by living in an Airstream trailer, known as the HepCarestream.

The approach is relatively novel; embedding into a community for a period of time, developing relationships, and catalyzing connection between resources that already exist but, historically, haven't worked together. The work is grant funded, and as grants do, this one is ending at the end of June, 2020. So far, the effort of this project has resulted in over 70 new primary care providers who are now connected to resources to support them in treating and curing HCV, in their local geography. More than half of the providers are actively participating. It's been a success.

I had great vision of developing a model of care based on the work I've done, to date. To have presence in a community is potent in terms of activating interest and inspiring action. Although I'm a native Californian, I have deep roots in North Carolina where I raised my son, went to Nursing School at UNC Chapel Hill, and have a strong community of friends. I had hoped to take my work there, to the western part of the state, the gateway to Appalachia and where there's a significant problem with opiates, meth, and HCV. I learned of a grant and was invited to apply for it by a member of the community in Asheville. The thought of going back to North Carolina to create infrastructure to combat these plagues was exciting. I felt my experience would inform a new approach. I applied, and was certain I was going to get funded. And then, I learned that in fact, I was NOT funded.

I started this work after I learned I was cured of HCV and was fortunate to partner with Dr. Norah Terrault, one of the most respected hepatologists in the world. (she is also the provider who cured me!) Together, she and I have done something amazing by recruiting more than 70 primary care providers into ECHO where they will learn to treat and cure HCV. I've got a Masters in Nursing, been a nurse for 35 years, and once cured I could only imagine doing this work for the rest of my career. The last 4 years have been amazing, but very hard.

I've done it, nearly singlehandedly, living in an Airstream trailer. (for the record, it's also been an amazing experience, and I'm writing a book about it!)

Running a nonprofit is a big job. Doing all the fieldwork as well as the administrative is overwhelming. There's a lot that could be done, but doesn't get done because I'm only one person. My fervor to help others get the cure that so changed the trajectory of my own life has fueled me. I've been active and enthusiastic, but over the last year, the weight of all of it began to dim my flame. This grant in North Carolina was the next step in building the innovative program I envisioned and included hiring a partner to help with operations and execution.

I guess it's not meant to be. I'm out of gas.

I've decided to end my nonprofit HCV work, at least in it's current capacity, and go back to the regular workforce. I certainly hope I can find a position in HCV. Surely there's an opportunity out there. There's gotta be.

I'm saddened at this, but after I complete this work in June, my get up and go to push a dream singlehandedly has got up and gone.

On the other side of the sadness is a great excitement for what's next, and where. I do hope that I find a meaningful role that is focused on HCV elimination. That's where my fire is.

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