2024 KCRP Vignette

Moving Ideas Out of the Lab and Into the Clinic Video (Text Version)

Susan Poteat, M.S., KidneyCAN

Description: In this video, Susan Poteat, a consumer advocate in the Kidney Cancer Research Program, shares her experience with kidney cancer, and why consumer advocacy is important. She emphasizes how novel drugs impact patients, but that there are still many unknowns about kidney cancer. As a consumer advocate on the program panel, her experience helps scientists understand how proposed research could impact clinical outcomes and patient experience.

Transcript:

For about 25 years, I was a medical physicist, by profession, so I worked in radiation therapy departments, and my husband was also a medical physicist. In 2001, his father was diagnosed with kidney cancer and he lived only a few months. To our surprise in 2007, my husband was diagnosed, widely metastatic. So that was the beginning of my personal journey in kidney cancer.

My husband was originally told by three different doctors not to bother to get treatment, and we went to a specialist at an NCI cancer center and got a very different answer. And as a result, he lived 15 years compared to the 3 to 6 months we were originally told. So that made us believers in the quality of care.

One thing that had happened is a new class of drugs that were effective on kidney cancer, targeted kinase inhibitors, came on the market, so that, we started to see some patients do pretty well. And we were lucky that my husband was one of them.

There's a lot we don't know about kidney cancer. When you compare kidney cancer to, let's say, breast cancer or prostate cancer, we are far behind them in having precision medicine and having a strict protocol that we know is a good place to start for all patients, where there are biomarkers that we can follow. Understanding the biology and the metabolism of that cancer. Why is it an immuno-sensitive cancer? Kidney cancer is an unusual cancer. It does not respond at all to cytotoxic drugs, the chemo drugs. We're finding more and more that there are many subtypes of kidney cancer, and trying to understand what drugs might be good for those subtypes. How can we identify patients early and try to understand which drugs might be more beneficial to an individual patient? Really, the federal dollars are the ones that support the development of ideas, the development of understanding, and the preliminary research that gets an idea ready to be a drug, and ready to move toward patients.

The time I've spent on the programmatic panel is literally the most exciting thing I've ever done in my career. They do a wonderful job bringing together a mix of top translational scientists, clinical oncologist, and they include the advocates.

We're asked to speak to what the impact would be. And I think our influence, along with the oncologists, is helping as we get more theoretical ideas come out of the lab, our input is helping us pick the ones that are maybe close to clinic and move them forward. I think it's another thing they've done just a great job of, and I hope that I’ve been a part of that.