Seeing our superheroes struggle can be difficult. It’s a view behind the ironworks and cladding. It’s intimate. And frightening. After all, if they too stumble and fall, what fate befalls the rest of us? But seeing that struggle is something else as well: It’s revealing. And it’s there, beneath the perfect sheen, the real strength shows.
You couldn’t create a more ideal life sciences superhero than Dr. Catalina Lopez-Correa if you tried. What makes her extraordinary is that she possesses both the “I” courageous attitude AND the “us” inclusive empathy. She advocates for diversity in research AND represents it. She’s led pioneering research efforts AND implemented innovation in practice. She promotes understanding your genetics AND was among the first to explore her entire DNA sequence. She’s worked across academia, pharma, biotech, AND nonprofits. She’s catalyzed partnerships nationally AND internationally in seven countries. Catalina is the real deal, walking the walk with an aura that’s just so incredibly human.
What happens when a superhero – the one harnessing the power of science and technology to protect the rest of us – is diagnosed with breast cancer?
“People are watching how you are facing this. Do you want to be public about this? Do you want to show that you are Superwoman, that cancer is nothing, that you can just work through it, no big deal,” Catalina sarcastically said, “or do you want to be human and show that you are really taking care of yourself and concentrating on your health?
At the urging of her oncologist, and with deep appreciation for the personal resources and support of her employer, Catalina decided to take a one-year medical leave and focus on herself. True to Catalina’s ambitious core, she also set goals: to use this journey – as a patient – to normalize and reduce the stigma of cancer, and try to find the positive in it.
Catalina’s decision to be public and document her cancer journey took serious contemplation. As a gay, Latina, female in science, she’s experienced her fair share of being treated differently, faced barriers in how people perceive her, AND has achieved remarkably in advancing her career and visibility as a thought leader in life sciences.
“It took me three days of thinking of posting a picture on Twitter where I felt I looked very vulnerable. Sure, people say nice things, but they also say nasty things. Putting yourself out there in a completely different light, being so vulnerable… People are sending love and that’s great, but is hard to see yourself like this. But, I believe there is a need for researchers and industry to hear the voice of the patient in different way.”
The patient journey has much room — and opportunity — for innovation. Despite “patient-centricity” being a phrase nearly every player in medicine regularly uses, Catalina described an experience of anxiety and ambiguity. Life science leaders often talk about a smooth flow from getting a diagnosis to defining the type of cancer through genomics, then treating precisely, successfully. As Catalina is experiencing now, what is shared from the podium at a conference is different than the reality.
“That period between getting diagnosed, testing for your biomarkers, and understanding what’s next is terrible,” she said. “You enter this black box where even doctor’s aren’t answering your questions. There’s a huge information gap filled with anxiety. When there is anxiety, people naturally look to any support they can find. The modern-day crowdsourcing through Facebook and elsewhere on social media can lead to its own problems,” according to Catalina. “There is a vastness of anecdotes, where everyone is just posting, and so much of it is just plain wrong.”
Catalina describes patient-centered care as care that is built with the mindset and goals of the individual as paramount. And it all begins with research.
“A big piece still missing in research is the patient perspective. We [researchers] say it and we keep on trying to incorporate it, but I think we are still doing it as a check box,” Catalina said. “But now I see it for myself – to understand the journeys (and not everyone will have the same journey), to understand and relate to the impact of the side effects, to understand the impact and variability of genomics, you simply need to know the patients much better.”
“Everyone is getting the same three markers – estrogen receptor, progesterone receptor, and HER2 receptor – to determine treatment. Now what?” Catalina said. “Where can the patient find decision-making support to understand how these amazing biomarkers and genomics are guiding treatment? How can treatment be personalized, and what does each treatment mean for prognosis, recurrence, their own goals as a person?”
Catalina embraces her cancer journey, specially the time to put herself first and experience the innovations in cancer care that she has helped pioneer. But, she is acutely aware that many women – without degrees in biosciences, financial resources, medical contacts, a supportive community, and more – will struggle from the myriad flaws in the system. She didn’t use the word but I heard it: injustice. The injustice is weighing on her.
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