By: Katherine M. Cole
Sometimes seeing things through the eyes of someone new to the world of oncology can remind us of how far we still have to go. In this guest blog, Kate Cole brings to your attention the cost of cancer treatment and the enormous problem it can pose for patients trying to get the care they need.
I graduated from college almost a year ago in May, and was incredibly excited to begin graduate school at the School of Social Policy and Practice at the University of Pennsylvania. I decided to pursue my master’s degree in social work, with the nebulous idea that I might one day want to do private practice therapy. As part of my program, I began an internship at the Abramson Cancer Center at Penn Presbyterian Medical Center in September—an outpatient hematology/oncology clinic where my role as social work intern ranges from making sure our patients have transportation to our office for appointments, discussing advanced directives with families, patient’s feelings about terminating treatment, and anxiety about possible side effects from chemo, to speaking with people about their insurance coverage and needs.
Before beginning my internship at the Abramson Cancer Center, I had the standard combination of feelings that most people experience before beginning a new job—excitement, nervousness, interest, and hope. I knew it was going to be a valuable learning experience. I assumed that I would mainly be doing therapy and counseling work around patients’ anxiety and stress with his or her cancer diagnosis. I assumed my days would be filled with tearful encounters, breakdowns, and anger. And, as tends to happen with assumptions, they proved to be almost entirely false.
Certainly, in my time as a social work intern I have done therapy and counseling work. I have also begun work with patients to discover that little or none of the anxiety/distress they are experiencing is a result of having cancer, but existed long before any medical diagnosis. I have had tearful encounters, and seen anger—but to be honest, it’s a rarity. Needless to say, I was surprised. However, the most surprising aspect of my internship—and the one that I think has completely altered my perception of cancer care and treatment—is the prevalence of patients who have inadequate insurance.
Seven months ago, I didn’t know the difference between a deductible and a doughnut. I was beginning graduate school right out of undergrad, and insurance was something I never had to think about or deal with; before college, my parents took me to the doctor, and during college I would just pop into the student health center if I was feeling under the weather. When I found out that my year long internship would be in an outpatient office for hematology/oncology, it didn’t occur to me that an enormous portion of my job would revolve around helping people navigate the fickle world of insurance.
Being on the front lines of healthcare industry during the implementation of the ACA (Affordable Care Act AKA Obamacare), I quickly discovered part of my job was going to be discussing insurance with patients. This meant I had to learn about it first—which also meant frequent powwows with my supervisor, some frantic Google searches, and attending several conferences specifically about insurance coverage and cancer. Even after seven months of doing this job, I feel like I have barely scratched the surface. Patients frequently come into our office with bills in their pockets or purses, and no idea how or why they have received them. Some medications cost $8,000 a month, and the copay can be around $2,000-$3,000. It was not a surprise to discover that most of our patients don’t have thousands of dollars in cash laying around that can be earmarked for these unforeseen expenses.
If your doctor’s office, like so many others, does not provide help for you to navigate the 33,000 pages of Affordable Care Act information, then there are a few places you might look. Both the American Cancer Society and the Association of Oncology Social Workers have websites that can direct you to a social worker in your area who might be able to help or make appropriate references. But more importantly, I would say that this is a problem and a gap in care that doctors and other health care providers need to be recognizing and addressing. Lack of insurance or, more frequently, underinsurance, should not be a barrier to a person receiving treatment—nor should being unable to access the information to navigate these obstacles.
So, what’s the lesson in all of this? There is an enormous difference between having insurance and having adequate insurance—particularly when it comes to a life changing illness like cancer. Our office is lucky to be one of the few outpatient sites with a certified oncology social worker. Most offices, as I have learned, do not employ one—which essentially means that the patient and his or her family had better be up to the task of sorting through the insurance conundrum on their own. To me, this is an absolutely unacceptable situation to allow patients to try and fight through. As someone who works with insurance every day, I struggle to stay on top of the changes that are so frequently being made. In today’s day and age, doctors need to be providing their patients access to either a social worker or a financial navigator as standard practice in quality patient-centered, comprehensive medical care. There is a need here that must be addressed—believe me, I see it every day.
If you are a patient, struggling with comprehending the subtleties of your insurance plan, social workers can help guide you through the murky, opaque waters of your coverage. They can advise you about making decisions regarding the level of your plan, and where possible supplements can be added. When applicable, they should also be able to refer you to relevant grant or assistance programs in your area or for your specific diagnosis. In addition to any emotional concerns a patient has, social workers understand that financial barriers and worries can be just as draining and frightening as the illness that brings someone to the doctor in the first place. It is my hope that more people have access to social workers along their medical journeys because, when you’re battling cancer, you should be able to direct your energy towards healing and not to worrying about coverage.