National Family Caregivers Month: Anabella’s Story
November is National Family Caregivers Month, a time to honor all of the courageous, dedicated and determined caregivers in our community. In recognition of this, we’re sharing the story of cancer caregiver Anabella Aspiras.
I was a 21-year-old college junior when my mother’s cancer returned. With metastasis to the bone and lungs, the prognosis was grim – and our lives changed forever. Her oncologist recommended hospice, which we accepted, more out of fear and desperation than as an informed choice. What happened next was nothing short of a miracle – my mother lived for almost four more years.
I wouldn’t trade that period of my life for all the money in the world – I cherish the memories of caring for my mother on her good days, her bad days and her many “new normal” days. But admittedly, money would be nice. Ten years later, I am still paying off the financial toll my mother’s treatment took on both of us.
With cancer, everyday challenges are compounded. We never had a lot money, but with my mother’s lost income, we had to make limited funds stretch even further. This led to sleepless nights, arguments, maxed-out credit cards – my mother was dying of cancer, yet on a daily basis, the financial stress was worse. I was terrified of literally everything from affording groceries to mounting loans – one unexpected cost and I feared the bottom would drop out from under us. And while it went unsaid, I know my mother was deeply saddened that all of this had fallen out onto me.
As my mother used to say, “Catastrophic illness equals catastrophic debt” – but must this always be the case? In the United States, cancer is one of the most expensive medical conditions, with patients often paying higher insurance premiums and more for copayments, deductibles and coinsurance. There is now growing recognition that beyond the side effects of oncology treatment, cancer can cause financial harm to patients. Financial toxicity is a term for this phenomenon, unique to cancer, wherein costlier drugs and longer treatment regimens exacerbate the costs of treatment. We didn’t know at the time, but for my mother and me, financial toxicity would become an enduring feature of her illness.
Searching for solutions
Thankfully, things are changing – financial navigators (i.e., trained professionals who can teach patients about cost-saving strategies and health insurance plans) are increasingly part of the interdisciplinary care team, and the transition to value-based care (where healthcare providers are reimbursed based on care quality) promises higher-value treatments with lower costs to patients.
I am grateful for the changes I see, although they are hard wrought from the agonizing financial struggles faced by many. As policy-makers, hospital executives, drug manufacturers, and healthcare providers, we can do better – and for every family with a story like mine, we must.
Anabella Aspiras is the Senior Director for Strategic Initiatives at Cancer Support Community.