According to her, Michele Rhee is one of the luckiest people in the world.
Which isn't something you’d expect to hear from someone who was diagnosed with both cancer and a rare disease in her early twenties.
But she sees things differently. “My medical history is what led me into my career. I am very lucky that I was able to find a career that is so influenced by my experiences,” she says.
“I know a lot of people whose personal experience has made it impossible to have careers and whose medical histories made it so they can’t work. I was lucky that my medical experiences influence and enhance what I do, and I appreciate that so much.”
As the Head of Patient Affairs at Enzyvant, a pharmaceutical company focused on rare disease treatment, Michele pushes for patient-centered care and treatment, a passion she’s pursued since her diagnosis and incredible cure over a decade ago.
I was lucky that my medical experiences influence and enhance what I do, and I appreciate that so much.
Before Michele’s long line of leadership roles in patient advocacy, her career began in the field of international politics and legislation. In the fall of 2002, Michele was interning for Senator Chuck Schumer in his D.C. office when Michele was diagnosed with thyroid cancer, which, at Michele’s young age of twenty, was very much treatable.
But during one of her follow-up appointments for the cancer, Michele’s physicians noticed multiple nodules popping up at a speed too fast to be cancer.
Within a year, Michele was diagnosed a right atrial myxoma, a rare disease that was - improbably - also curable.
“So, very randomly I was diagnosed at relatively young age with a treatable cancer and then a treatable rare disease, and most people don’t get told that,” says Michele.
“Most people don’t get told that you have cancer but it’s basically curable and they also don’t get told that you have a rare disease and it’s basically curable. Most people get told you have cancer or a rare disease and we don’t know how to help you. And I just knew how lucky I was. I was stupidly, stupidly lucky. The only thought that was going through my head was that I want to help other people be lucky too.”
I was stupidly, stupidly lucky.
That moment is when Michele began her path in patient advocacy. Starting as a clinical trial coordinator, she went on to work at the National Brain Tumor Society, bluebird bio, and Takeda Oncology, and finally, at Enzyvant, Michele has made strides in the field of patient advocacy, especially in the realm of rare diseases. At Enzyvant, Michele takes great pride in the company’s emphasis on engaging patients at every step of the process. In her role as Head of Patient Affairs, Michele ensures that the patient perspective is incorporated at all stages: from designing clinical trials to selecting clinical trial sites.
In the end, Enzyvant’s mission is to get treatments to patients with rare diseases so they too can have the feeling that Michele did 15 years ago when she was diagnosed. “I want patients to have that ‘oh I’m lucky, I have a good cancer’ kind of feeling,” she emphasized.
“As I’ve worked in the rare cancer, rare disease space, that’s what always drives me. That’s the hope that I have, that with the work I’m doing, there’s some patient at the end of my work who will hopefully be able to say—I have a good disease. I have a treatable disease.”
For every patient looking at a treatment decision, Michele emphasizes the importance of considering clinical trials and seeing them as viable options.
“When I look at the world of clinical trials, there are so many extraordinary things that are happening, I sometimes think I’m living in a sci-fi book or living in the future…I am amazed by what’s happening,” says Michele.
“The opportunity to look beyond the traditional space is really exciting. So anytime you are looking at your treatment options, considering something that’s outside the box is a really nice way to go beyond your initial fears. It lets you look at your future in a different way.
When I was initially diagnosed, before they told me what my treatment options were, I had a really stark view of what my future would be. If I had known more about clinical trials, I would have had a different view of what my potential future would be. I think that this hope makes a really big difference--hope of a different type of future.”