Dr. Catharine Young, Executive Director of The SHEPHERD Foundation is exemplifying proficiency with her prolific leadership. Known for her out-of-the-box thinking, Catharine is effortlessly leading the not-for-profit organization towards the pinnacle of meaningful success. On a mission to be a bridge between the advanced medical systems and the rare cancer patients, Catharine is meticulously fighting tooth and nail to save rare cancer patients' lives.
In an attempt to understand her journey, we spoke to Catharine to know what fuels her passion and what The SHEPHERD Foundation is about.
Leading a meaningful change
Catharine Young: “As a trained scientist, my interest in science and my career path has been a slow evolution but one that has crystallized my desire to be a part of fixing systems that are not designed or fail those they are meant to serve. Ultimately, finding a home at The SHEPHERD Foundation, a renegade organization fighting to fix the broken healthcare and research systems for rare cancer patients and beyond, has really been the culmination of both my career aspirations and personal life lessons so far leading me to this point.”
Improving patients’ journey
Catharine Young: “The SHEPHERD Foundation is one of the few pan-rare cancer organizations in the US. Our vision is to 1) create a healthcare and research system that is designed and governed by policies that work for all patients; 2) to empower a global community this is unified, mobilized, and endowed with the resources, tools, and funding to ensure that all patients have the right to live; and 3) to provide all patients with equal access to accurate information, support and treatment options that are tailored to their unique disease and experience. Our team members are located in the cities of Nashville and Boston, with our headquarters in Washington DC.”
“Molecular diagnostics at the time of cancer diagnosis is the single most powerful tool currently available to improve outcomes and advance the science and practice of treating cancer but access to them is inequitable”
Challenging the cancer system
Catharine Young: “We fundamentally believe that no patient should be left to die. When we hear the term ‘rare cancers’, it’s easy to assume that these are obscure illnesses that affect few people and occur in exceptionally uncommon cases. There is not even an official definition of what legally constitutes rare cancer (something that we are trying to rectify through federal legislation). In which case - if you can’t even define a problem - how do you even solve it? But the facts about rare cancers are surprising to many when they first hear them and so a big part of our work is challenging the narrative around what rare is because rare cancer is not rare. In fact, 380 of 400 known cancers are rare cancers, one-third of cancer diagnoses qualify as rare cancers, and 550,000 people are diagnosed with rare cancer every year. Most types of cancer – 95% -- are considered rare.
In addition to this incorrect narrative - rare cancers are not equitable, and they strike some of our most vulnerable and under-resourced populations the hardest. All pediatric cancers are, by definition, rare cancers, and over 95% of pediatric cancer survivors will face a significant side effect of their cancer treatment by age 45. Rare cancers disproportionately target minorities, including Hispanics, Asian Americans, Native Hawaiians, and Pacific Islanders, for whom cancer is the leading cause of death. African Americans have the highest mortality rate of any racial and ethnic group for all cancers combined. Cancers also disproportionately affect military service members, and 68% of those cancers are rare cancers.
Taking all of this together we also know that rare cancers have data, funding, and development issues. Rare drug development is disproportionately uncommon. In recent oncology clinical trials, over a five-year span, 75% did not include even one rare cancer. Over 100 rare cancers have no publicly available data sets; those rare cancer patients are almost seven times less likely to have an approved targeted therapy for their cancer compared to those whose cancers have at least one dataset. Because so many research organizations and companies are operating in silos or in competition with each other, there are only disparate and fragmented databases for many rare cancers. Research and treatment for rare cancers are funded at a significantly lower rate than for those cancers considered common. These are the issues we are tackling through our levers of federal policy reform, coalition building with patients, caretakers, and the over 400 rare cancer organizations that exist in the US and sharing the realities of rare cancers through storytelling.”
“We are fighting for change because Rare Isn’t Rare,” says Dr. Catharine Young, Executive Director of The SHEPHERD Foundation.
Impacting the future
Catharine Young: “One of the biggest highlights so far is that after several years of hard work and non-stop effort by our team and government partners, we are poised to introduce transformational bipartisan federal legislation that will require molecular diagnostics tests (which compares cancer DNA to our healthy DNA) to be covered by insurance for all cancer patients at the time of diagnosis. Molecular diagnostics at the time of cancer diagnosis is the single most powerful tool currently available to improve outcomes and advance the science and practice of treating cancer but access to them is inequitable. Equity and justice in healthcare are at the heart of all we undertake at The SHEPHERD Foundation, which is why we are committed to ensuring that all cancer patients have access to them.”
Converting barriers into milestones
Catharine Young: “As a female working in primarily STEM-related fields, there has been no doubt that I have encountered significant barriers in my career. But broadly speaking - all women have battle scars. We are consistently judged by our outward appearances, on how we speak, how we act, and what we say. And on the flip side, we often have to work twice as hard to be seen, heard, and appreciated in terms of the skills and ideas we bring to the table (if we are even invited to sit at it, to begin with). For me, I’ve looked to surround myself with a support system of allies - both men and women - who understand on a deeper level who I am and what I am trying to accomplish. And to never give up or stop moving forward - especially when things become challenging. I find solace in the fact that regardless of how difficult my career path might be, that I am beating down the path just a little bit more from those before me to ensure an easier journey for those rising up behind me.”
‘Be proud of who you are'
Catharine Young: “To all ambitious women leaders I would say if you’re like me it's easy to be afraid of the unknown - but be open to new possibilities. It’s been my experience that we tend to err on the side of undervaluing our skills, which in almost ALL instances is not the case. Be proud of who you are and what you have accomplished and don’t be afraid to let that light shine through. Also, don’t be afraid of failure - if you allow failure to hold you back from an experience or new job opportunity you are immediately assigning a “no” to yourself without giving yourself a fighting chance.”