By Mandi Battaglia Seiler
Having spent nearly 15 years working for the American Cancer Society’s free 24-hour cancer information service (NCIC), I have learned a lot about the challenges cancer patients face when it comes to navigating the health system. This knowledge helped me when it came time for me to care for 3 loved ones dealing with cancer.
Most of the issues I dealt with are the very same concerns patients call us about. Three of my personal experiences in particular provide insight into the important advice we give callers.
Explore all opportunities for treatment
My father-in-law, Ralph, was diagnosed in 1995. He inspired me with his incessant need for more information on how to beat his cancers. First getting diagnosed with prostate cancer and later, a second primary of bladder cancer, he never gave up – even requesting clinical trial information while on hospice care. I lost him in 2007, but not before seeing up close the determination that drives people like him to call our Clinical Trials Matching Service at any stage of their cancer journey.
Advocate for the right care – and be persistent
Before Ralph passed, my mother, Kaye, was diagnosed with breast cancer. Having helped many a patient with access-to-care issues navigate many systems as a member of the American Cancer Society’s Health Insurance Assistance Service team, I was fortunate to know persistence was key. I guided my mother through 3 different medical centers operated by the Department of Veterans Affairs, ultimately speaking with a helpful patient advocate at the third one to ensure her placement in an adequate hospice environment. I lost her in 2010 having learned the tenacity required to ensure a loved one gets the care they need and deserve.
Review all medical bills closely
Now I am in the midst of caring for my husband, Jeffrey, diagnosed at 49 years old with prostate cancer. My past experiences with my mom and father-in-law, combined with my work as a supervisor at the National Cancer Information Center entrusted with two invaluable Society programs – the Clinical Trials Matching Service and the Health Insurance Assistance Service – gave me a head start in terms of knowing what to do. I investigated a half dozen clinical trials closely, deciding on one, with Jeffrey’s input, in a nearby city. I have vetted each medical bill at every turn, submitting constructive feedback as needed. One such instance was pertaining to receipt of a bill in excess of $9,000. After all claims were processed, our actual bill was $132. To get the claim processed correctly, I had to call the medical facility twice, speak with our health insurance company, and communicate with the medical facility’s billing department by email over the course of 4 weeks.
It is with Jeffrey’s cancer journey I have learned defiance is a necessary tool in the caregiver’s belt. Give feedback. Fill out every survey you are sent. Even if it is days, weeks, months later. Changes and improvements to our medical system come from our collective voices speaking up about what is critically important to patients and caregivers.
And call us at the American Cancer Society. Our phone lines are open every minute of every day to help give people the answers they need about cancer. Each year, we provide free information and support to the nearly 1 million people who call us at 1-800-227-2345.