The questions you need to ask and the answers you demand to know about the cost of your cancer care.
By Molly MacDonald
Note from the author: If you are reading this article, you may be a new Survivor, experiencing a recurrence; or just like reading my columns. Whatever the case, I hope you will find the following information helpful to you or someone you know.
Getting the News
After the shock wears off from hearing the words that often begin with “I’m sorry,” and end with “you have breast cancer,” we survivors work with our healthcare team to create a treatment plan to save our lives.
For many of us it’s a long road, riddled with multiple surgeries, and physical, mental, and emotional side effects that vary patient to patient.
Your doctors will discuss your treatment options, while doing their best to minimize what can often be very challenging side effects. They will prescribe medications, and may make suggestions for integrative care like acupuncture.
They may also suggest joining a support group at your hospital, at your church or in your community or reaching out to national breast cancer organizations that support survivors such as Cancer Support Community, Gilda’s Club, Young Survival Coalition, or Living Beyond Breast Cancer to manage some of the emotional and psycho social aspects of cancer treatment.
But there is one side effect that is most often not discussed, and that is financial toxicity: the cost of care and out of pocket co-pays and deductibles. Adding insult to injury, the cost of lost wages when you must take time off fromwork for treatment and recovery can make you feel a little like Alice when she tumbles down the rabbit hole, going into financial freefall.
In May of this year DailyWorth.com reporter, Julia Sonenshein, wrote “a 2009 study in Pharmacoeconomics estimated people with breast cancer could pay between $20,000 and $100,000 in co-pays, depending on their health care coverage, length of treatment, type of care, and other variables.”
Those numbers alone make one’s head spin, before adding in the cost of lost wages.
A 2104 story in The ASCO (American Society of Clinical Oncologists) Post, reported 37% of cancer survivors surveyed experienced a financial or work-related hardship and said they had to make at least one work modification due to a cancer diagnosis. Just ask a group of breast cancer survivors about work and cancer and they will often admit to the financial hardships that come from loss of income.
Some survivors are eligible to take a medical leave under the Family Medical Leave Act. FMLA will allow up to 90 days of UNPAID leave in a calendar year. While this will ensure you can return to work, it will not ensure your checkbook stays in the black.
And unless you are one of the few and far between, who have been able to sock away at least three to six months cash savings, this unpaid leave can result in unpaid bills and the potential for catastrophic financial losses, including the loss of one’s health insurance, residence, car and the shut-off of utilities.
“The result is the emotional, mental and physically debilitating, often life-threatening financial side effects induced by cancer treatment,” according to S. Yousuf Zafar, MD.
I know this all too well as I experienced it myself in the summer of 2005.
At the time of my diagnosis I was transitioning between jobs, unprepared (aren’t we all?) for a cancer diagnosis which detoured my career plans to the off ramp while I underwent treatment. My early stage disease spared me from the ravages of chemotherapy, but the loss of my income and the cost of a COBRA health insurance premium of $1200 a month, ravaged our financial health.
In the Journal of National Cancer Institute, Volume 108, Issue Five, Zafar goes on to say, “Chemotherapy related physical toxicity is a central focus of the cancer treatment process, but a nationwide survey shows we need to pay more attention to and create a dialog about the effects that financial burdens have on breast cancer treatment strategies and outcomes.”
So what is a patient to do?
The reality is we must face the facts that cancer treatment is expensive. And we must arm ourselves with knowledge.
Our lives and financial health are worth it!
This means having the hard conversations about how to financially manage the cost of treatment and the potential for lost wages.
Growing up, my parents constantly reminded me of four topics of conversation that were off limits:
• Sex, and
One’s financial health or lack thereof was a private matter. You were not to discuss it nor ask about it. So I know talking with others about your personal financial concerns can be difficult.
Particularly when you are already feeling vulnerable. To have to talk about our fears around money and the cost of cancer care can be embarrassing. But believe me, this is not the time to bury your head in the proverbial sand and hope it will all go away It is the time to be proactive. But how?
In the words of Dr. Susan Love, author of Dr. Susan Love’s Breast Book, “Get yourself an advocate.” Ask your most assertive friend or family member to speak on your behalf. Dr. Love suggests asking your meanest, take no prisoners type. The friend who won’t let anyone off the hook until he or she gets the answers YOU need.
Take this friend to your appointments and ask them to take notes. You could even record the visits, as so much is lost in translation. We know from detectives interviewing witnesses of crime scenes, people who have been in the same place at the same time, tell vastly different stories of what they saw and heard. It is the PTSD syndrome, which applies to cancer as well, and can happen in a treatment setting. We are under duress, trying to process so much information. Our minds are racing. Even your friend could get it wrong.
Begin by asking the doctor’s permission. Say, “I really need to record this in order to properly process and understand it.” However, be prepared, permission may be denied. Here is a link to the Cullman Regional Medical Center where their Good To Go Discharge instructions can be used on an Apple device. If your doctor balks, feel free to share this link as a recommended best practice. http://www.crmchospital.com/for_patients_guests/good-to-go_discharge_instructions.aspx
On a side note, we record our Board meetings at The Pink Fund. When the minutes are being written for consideration, I am often surprised and say,” oh that did not happen that way,” until our Secretary sends me the recording, confirming in fact, it did.
Money Talk/What to Ask First
According to Cancer.net, the first questions you ask your doctor should be:
“I am worried about costs related to my cancer treatment and my ability to work while in treatment. Can we talk about my concerns?
Who handles concerns and questions about health insurance in this office or medical center?
Will this person help me work with my health insurance provider?
Will this person help me figure out my medical bills and the codes to make sure they are correct?
This is critical. Mistakes can result from typos or overcharges. I just had a tomosynthesis mammogram and was assured when I booked the appointment, it would be 100% covered. So imagine my surprise when I received a bill for a $39.72 co-pay. I called the hospital and disputed the amount and it was removed. And while $39.72 is not a great deal of money, it represents the cost of one tank of gas, or my monthly Chardonnay budget. Small numbers add up. Question everything.
How much is my co-pay for each doctor visit?
Do you offer a payment plan?
NEVER OFFER UP A CREDIT CARD. This is the time to ask to speak to a nurse navigator or financial counselor at the hospital. I negotiated my co-pays in half and then agreed to a payment plan in writing of $100 a month. It took me three years to pay it off, but I did so faithfully.
What is my prescription co-pay for this drug?
If I cannot afford the recommended treatment plan, can we consider other treatment options that don’t cost as much?
My friend and sister survivor Laurie Tennent, not-so-kiddingly talks about “supersizing your treatment” She says, “well we are going to do an MRI and give you a side of fries with that, and it can cost you $800 dollars, but they don’t tell you because they don’t know.”
Well, you need to know.
It is fair to ask and get an answer about the cost of a particular treatment.
Remember, you are in charge of not only your physical health but your financial health. Asking and getting an answer, may not change your treatment plan, but it may well change how you plan to pay for it.
What about working?
As reported in the October 2014 edition of the ASCO Post, the Palliative Care in Oncology Symposium “of nearly 1600 cancer survivors indicate a high prevalence of financial and work-related difficulties. Women were disproportionally burdened by these challenges.”
Knowing this, ask: Are there ways to adapt my treatment schedule to my work schedule so I lose as few work days as possible?
Other Questions to Ask
These questions and more covering every aspect of treatment and recovery can be found here: www.cancer.net/navigating-cancer-care/financial-considerations.
The Good News
The good news is physicians are beginning to understand and realize the need to have the hard conversations around the cost of care.
Nandita Kera, MBBS, MPH Division of Hematology/Oncology, MayoClinic, Phoenix, AZ wrote in the September 2014 Journal of Clinical Oncology, “ If we, as a profession, believe that financial toxicity is an important effect of cancer treatment that can be as devastating as other adverse medical events, it behooves us to find a way to capture the full impact of cost on the lives of our patients and to discuss this frankly, and openly, with the same rigor as any other treatment-related toxicity.”
The Better News
Survivors are becoming more empowered to be their own advocates, ask the right questions and demand answers. Your life and livelihood are worth it.
As always email me, Molly@ThePinkFund.org or visit our website for a list of additional financial resources, www.thepinkfund.org.