By Nadi Nina Kaonga
In 2010, I lost my mother to cancer. She was a fighter and had survived well past her prognosis, but her hospital costs outlived her. Let me go back to late 2004. That was the year the doctors suspected she had cancer. My mother, who was not a smoker, was officially diagnosed with non-small cell lung cancer early on in 2005. When the biopsy confirmed that the small lesion in the lower lobe of her right lung was indeed cancer, the surgeons performed a lobectomy. We, of course, realized that this would come at a cost, but we had decent insurance coverage at the time. We certainly were not anticipating the cost to rival and even surpass the bills we paid after my sister was born, via caesarian section, around that same time. Following the recommendations of my mother’s oncologist and second and third opinion, my mother underwent six months of chemotherapy. The bills continued to accumulate. To complicate matters, the hospital’s billing system generated a new account number for each visit or procedure, making it difficult to track the bills and stay organized.
While we were considered to be in the middle class, had good insurance coverage and some savings, we could not keep up with the bills. We even tried to get our car insurance payments lowered, which we did thanks to the help of Money Expert. My parents were constantly on the phone with the hospital, trying to figure out options. Could we have lower monthly payments? No. There is a required minimum payment. But we cannot afford that. What other options do you have? Let me transfer you to a different department. Could we be considered for any grant programs or hospital assistance? You are well above the income bracket for any federal or hospital assistance. Can we link the accounts? That is not possible under our current system. What can we do?
We resorted to paying what we could and racked up dozens of voicemails from bill collectors, not only from the hospital, but now our credit card companies. In the meantime, my mother was in remission for a little over two years. The number of required follow-up visits with her oncologist decreased, which helped reduce our financial burden. Unfortunately, it was short-lived. The cancer returned with a vengeance. The visits to her oncologist increased. She began radiation therapy; she also sought out alternative treatments. At this point, due to employment changes, we had a different insurance provider; they were a lot more accommodating of the situation than our previous insurer. It certainly was unexpected, given our previous conversations and experience with the previous insurance company.
As we look back, my family and I feel that the bills and dealing with our debt were a small price to pay to have my mother around for a few more years. But I know that, because of it, my mother did not only have a cancer burden but also a financial burden to worry about. We were fortunate in that while we struggled somewhat with the hospital bills, we were financially able to pay these costs, eventually. I know that there are many other families out there who are not as fortunate. We would ask that hospitals and insurance companies have more transparent information on costs and what the patient would be expected to pay. We would also advocate for flexible payment mechanisms, especially if eligibility for assistance is denied. Furthermore, compassion and understanding should not be limited to the health care providers. The billing departments and other hospital administration sectors are also key members of the health team and often deal with patients and their families at vulnerable times. Their kindness and advocacy is just as important, if not more so, than the support provided to the patient prior to a major surgery, after hearing difficult news, et cetera. We hope that progress will see patients getting to focus on their health and precious family time, rather than worrying about health care bills. The system should not allow hospital bills to burden or outlive our loved ones.
Nadi Nina Kaonga is a Tufts University School of Medicine MD/PhD student with a passion for global health and human rights and was a contestant in the 2013 Costs of Care Essay Contest.