Hello everyone, I'm Rose Gerber, co-host and director of patient advocacy and education. I know that this time of year everybody is extra busy, both in your professional and personal lives, so I’m especially grateful that you are choosing to spend 30 minutes with us today. You will not regret it because you’re going to learn some really valuable information from our incredible guest, Monica Fawzi Bryant, the Chief Operating Officer of an organization called Triage Cancer. I have long admired this organization because it focuses on a unique aspect of cancer care: legal rights. Triage Cancer is led by a powerful duo of attorneys who have become incredible advocates.
Today, we’re going to learn a lot about legal issues surrounding a cancer diagnosis. Honestly, that’s something I never considered when I was diagnosed, and I’m sure many other survivors haven’t either. It’s one of those things you don’t know you don’t know. Monica will teach us about issues we may never have thought about and provide tools and knowledge to respond, whether for ourselves or for a family member. Monica, thank you so much for being with us today and sharing your expertise. Welcome.
Monica chuckled, noting that the phrase “you don’t know what you don’t know” is never truer than in cancer-related legal issues. She expressed being honored to discuss “what’s legal about cancer.” Triage Cancer is a national nonprofit dedicated to providing education on legal and practical issues affecting both individuals diagnosed with cancer and their caregivers. These issues include health insurance options, navigating plans, employment, estate planning, and disability insurance. Many of these topics are not addressed in the doctor’s office but are questions patients and caregivers often face.
A common term in the cancer community is financial toxicity, coined by researchers at Duke University. They compared out-of-pocket expenses following a cancer diagnosis to the physical toxicity of cancer treatments. Importantly, they highlighted not just the acute financial burden during treatment but the long-term impact on patients and caregivers. Financial toxicity can accumulate over time due to multiple factors.
Triage Cancer identifies health insurance as a primary contributor. This doesn’t always mean lacking insurance but often involves having inadequate coverage or not understanding how to use the plan. They emphasize educating people on selecting and navigating health insurance, something many of us learn only when faced with medical bills. Employment changes, either for the patient or caregivers, are another significant factor, as is access to disability insurance. Life events like relationship changes, moving, or school graduation can further compound financial challenges.
Monica likened navigating cancer-related legal and financial issues to putting together a 1,000-piece jigsaw puzzle without seeing the picture on the box. Patients may not know what the complete picture looks like or identify the individual “puzzle pieces.” These pieces include federal laws and programs, state-specific rights, employer-provided benefits, and various types of insurance such as disability, life, supplemental, and long-term care. They may also include financial assistance programs. Understanding all these elements helps individuals assemble their unique “picture.”
Almost every legal issue in cancer care—health insurance, employment rights, government benefits, education rights, estate planning, and medical decision-making—is rooted in access to care. Lack of job-protected leave can prevent someone from completing screenings or treatments, creating a domino effect impacting housing and overall stability. Estate planning is crucial for everyone over 18, not just those diagnosed with cancer, yet 68% of Americans do not have a will. Free and low-cost options exist to create estate planning documents. Normalizing these conversations reduces the emotional burden and allows individuals to provide for loved ones. Triage Cancer offers an estate planning toolkit with general guidance, state-specific instructions, and forms for all 50 states, all available free of charge.
Triage Cancer provides multiple educational resources to meet different learning needs. These include monthly webinars, two day-long online events on topics like health insurance and employment, interactive trainings for healthcare professionals, and quick guides and checklists that range from one to four pages. Healthcare professionals can request printed copies free of charge. The quick guides explain laws and programs such as the Americans with Disabilities Act (ADA), the Family and Medical Leave Act (FMLA), and the Social Security Administration’s SSI and SSDI programs, providing baseline and in-depth information.
Many patients’ first questions involve employment rights: can I take a leave of absence for treatment, and do I have to return to work afterward? The answer often depends on factors such as employer size, state laws, and length of employment. To help people navigate these questions, Triage Cancer also offers five-minute animated videos available in English and Spanish, providing a high-level overview before exploring deeper guides. Their educational blog breaks down current legislation, like the Inflation Reduction Act, in plain language to explain its benefits for the cancer community.
Triage Cancer’s legal and financial navigation program allows anyone along the continuum of care, including caregivers and healthcare professionals, to reach out via a website form for personalized guidance. They explain options, provide accurate information, and outline next steps so individuals can advocate effectively for themselves. Real-life examples, like helping a professor access a $25,000-a-month drug for his daughter while accepting a new job, demonstrate the impact of their services.
To continue supporting the community, Triage Cancer provides contact information, ongoing webinars, interactive events, training for healthcare professionals, quick guides, animated videos, blog posts, and one-on-one navigation assistance. All these resources are free and accessible nationwide.
Rose closed by thanking Monica and Triage Cancer for their work and expertise, noting the value of learning about what we don’t know. She reminded the audience that the session will be available on KOA’s website and encouraged everyone to join future advocacy chats, including the next session on January 11, 2023, with Ted O’Con and Nick Ferreras. She thanked attendees for their time, participation, and dedication to patient advocacy, wishing them a wonderful holiday season.
