Gwen Darien is a three-time cancer survivor whose journey reflects resilience and advocacy. After being diagnosed with non-Hodgkin lymphoma, breast cancer, and endometrial cancer, Gwen navigated significant physical, emotional, and economic challenges. Her experiences of lack of trust from healthcare providers and the high costs of care prompted a shift from the arts to health justice advocacy. For over 28 years, she has emphasized the importance of centering the patient in healthcare research and delivery and the need to acknowledge the true impact of illness on patients and families. Gwen’s story illustrates the hidden costs of cancer and calls for a healthcare system that prioritizes patients’ voices and inclusivity.
Thank you for sharing your journey, Gwen. What challenges did you face during your non-Hodgkin lymphoma diagnosis, and how did your internist influence your views on trust and communication in healthcare?
My first diagnosis was with non-Hodgkin lymphoma when I was a young adult. At the time, I knew very little about cancer and I didn’t understand what it meant or how it would impact the rest of my life. My journey to diagnosis was difficult, as my internist didn’t believe me when I said something was seriously wrong. He didn’t trust my concerns, and when it turned out I had cancer, he never spoke to me again. That experience taught me the importance of being heard and trusted in healthcare. Twenty years after my first diagnosis, I was diagnosed with breast cancer. I didn’t see it coming, even though I knew the radiation treatment for my lymphoma had increased my risk. Five years after that, I was diagnosed with endometrial cancer. I was surprised but not shocked, as my treatment for breast cancer had elevated my risk. Over these three decades, I’ve faced cancer in many forms, and I’ve been a patient advocate for 28 of those years.
How did your cancer journey impact your finances beyond medical bills, and what overlooked costs of cancer care providers should consider?
Reflecting on the economic impacts of my cancer journey, I see the challenges from different perspectives. From the patient’s view, the costs are all-encompassing: medical bills, transportation, healthy food, exercise, psychosocial care, and long-term health costs. For me, dental work was a particularly significant expense, as it was a late effect of my treatment. When healthcare providers think about the costs of cancer, they often focus solely on clinical care, overlooking these broader expenses. Then there are the opportunity costs, both financial and non-financial. As a young adult diagnosed at 35, cancer interrupted my career growth, impacting my income and professional trajectory. It also led me to shift my career from working in the arts to becoming a cancer and health justice advocate. This was a profound change, one I embraced, but it wasn’t what I had originally planned.
In what ways has cancer impacted your family dynamics, and what social challenges emerged as your roles evolved throughout this journey?
The social costs were significant too. My family roles evolved dramatically over the years, from my first diagnosis when I was single and living far from my parents and 3 siblings to my second and third diagnoses when I was newly married with 2 beloved step-children. Each of these roles brought unique financial and emotional demands, reshaping my responsibilities in ways I hadn’t anticipated.
What should healthcare providers understand about cancer patients’ financial burdens, and why is a safe space to discuss finances necessary in healthcare?
I want researchers and healthcare providers to address my financial burdens and those of other patients. I ask healthcare providers to create a safe space where we can talk about money without fear of shame or judgment. Conversations about finances can feel vulnerable and challenging, especially when there’s a fear that our financial status might impact the care we receive. I want my healthcare provider to see the complete economic picture of my journey to wellness, not just the costs incurred in their office. I urge researchers to study the economic impacts of cancer more holistically. It’s essential to look beyond clinical care and consider the social environments in which patients and their families live. We spend only a tiny amount of time in healthcare settings, most of our lives are spent in our communities. We are more than just our disease.
How can one start in patient advocacy, and what resources does the Patient Advocate Foundation offer for aspiring advocates?
For those looking to engage in patient advocacy, there are many ways to get involved. I recommend learning about patient advocacy through the Patient Advocate Foundation, where I work. We offer a comprehensive, free advocacy curriculum that goes deep into what it means to be a patient advocate, along with shorter modules on advocating for yourself and others. I encourage patients to join the Patient Advocate Foundation’s Patient Insight Network to ensure their voices are heard. Additionally, organizations like PCORI (Patient-Centered Outcomes Research Institute) offer advisory boards and funded projects that value patient involvement. Participating in patient and family advisory boards is another powerful way to influence healthcare research, development, and implementation.
As patients and advocates, we are vital in driving change within the healthcare ecosystem. By centering patient voices, we can ensure that healthcare truly serves those it aims to heal.
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Gwen Darien is the Executive Vice President of Patient Advocacy, Engagement, and Education at the Patient Advocate Foundation and a member of the Center for Innovation & Value Research’s Economic Impacts Steering Committee.