Kelly Irvin is a multi-published novelist and former newspaper reporter who worked in public relations for more than 20 years. She retired from her day job in 2016 after being diagnosed with primary lateral sclerosis, a degenerative motor neuron disease, and stage 4 ovarian cancer. She spends her days writing and loving her family.
People with cancer have to gear up for the emotional and mental workout of dealing with insurance. Here are some tips for coping.
Insurance is a topic that strikes terror into the hearts of most people with cancer or any other life-threatening or chronic illness. Everyone has their story. People either want to bury their fears or vent to anyone who’ll listen. I’m sharing my story — my most recent story — now, not to vent, but as a springboard to how we can handle this anxiety-inducing, frustrating fixture in our lives. I’m not talking about creating folders, compiling spreadsheets and making lists of the pertinent telephone numbers. I’m referring to the emotional and mental workout it takes to enter the insurance maze and come out on the other side a sane person (or as sane as you went in).
I was in the infusion room waiting for treatment when the nurse came to tell me prior approval for one of my drugs had expired. They were on the phone talking to the insurance company about getting it extended. Finally, the nurse returned to say the review process would take 12 to 14 days. We proceeded without the drug, knowing the next week was my week off from treatment anyway.
Two weeks later I returned. My doctor informed me the entry showed “still in review.” She suggested I call the insurance company because, in her words, “they’re more receptive to the patients than they are the doctors.”
I went home once again without a critical component of my treatment for stage 4 ovarian cancer. I called. I was told I have a benefits-values team that handles my account, which I interpret to mean a team that tries to figure out the most cost-effective way to pay for two chronic life-threatening diseases. A member of that team told me the request was submitted improperly as a “new request” instead of a continuing request. She offered to have it expedited since the process had to start over. She assured me a determination would be made before my next treatment in one week.
I didn’t hear anything for several days, so I called again. This time a different representative told me it’s been recommended for approval, but approval hasn’t been given. Progress! I was elated and relieved. She assured me that someone would call me before Thursday, the day I’m due for treatment.
Wednesday afternoon rolled around, still no word. I called again. This time the representative has an answer. It’s been denied and deemed “medically unnecessary.” I was stunned. And furious. And scared. I stuttered. “I don’t understand. I’ve been on this drug for more than year. How could it suddenly be medically unnecessary?”
She read the first part of the denial letter to me. It was incomprehensible for a layperson. I asked who made the determination. “A board of medical doctors and nurses.”
She explained that there is an appeals process, but it takes 30 to 90 days.
“No wonder no one called me back,” I mumbled. “They didn’t want to tell me.”
I was too stunned to come up with much more. Until I hung up. Then I wanted to call back and ask for the names and addresses of the people who made this decision, so they could be invited to my funeral.
Melodramatic? Not really. Avastin is a somewhat new targeted drug therapy that helps, in the simplest terms, to keep tumors from spreading. It’s one of the few advances that has occurred in the treatment of ovarian cancer in the last 20 years. The drug is approved for maintenance because in clinical trials it showed an increased progression-free period for ovarian cancer patients—that precious time when we’re NED (no evidence of disease). That time when we can recover from the ravages of chemotherapy.
The drug alone costs about $11,000. That doesn’t include the office visit or the infusion room nurses’ labor. I’ve received this drug 25 times, in addition to two other expensive chemotherapy drugs and all the pre-meds that go with them to fight the side effects.
My furious husband talked about suing. I asked my doctor about the expedited appeals process available for infusion drugs or injections. She declined, because she says we need to be “strategic.” She still wants Avastin to be an option for my next maintenance period. “We have to sit quietly until the time is right.”
This is from my oncologist—the one who has treated me for the last two years and knows my medical condition intimately. A doctor with a degree in internal medicine denied my drug request.
While we go on with the rest of my treatment, I remind myself that it is important to keep things in perspective. Insurance and drug companies are not the enemies. They’re not sour, scheming businessmen out to make a buck on the back of poor, sick people. We can’t afford to waste energy on stereotypes.
The truth is without insurance companies, my husband (who had quadruple bypass surgery last year) and I would be bankrupt. I paid insurance premiums with my employer for 23 years before I retired, and those payments probably only amounted to a drop in the bucket for my medical expenses in the last three years (and it’s not the same insurance company).
I am blessed to have good insurance. I know others are not. They’re drowning in a sea of medical bills. This is a setback for me, but I still have coverage—even good coverage.
Without drug companies willing to invest in clinical trials, research and development of new cancer treatments, I mostly likely would be dead. I won’t argue about the spiraling cost of these drugs. I don’t have that luxury. No one with metastatic cancer does.
Instead, I find ways to deal with it. Here things we can all do:
Find out if your clinic offers financial counseling and avail yourself of it. I met with one at the beginning of the year to talk about the co-pays I would need to meet until I reached my out-of-pocket cap this year. She filled out an application for the drug manufacturer’s co-pay program. A week later she let me know that I had been accepted. The co-pays alone can wipe out a patient’s savings. And they come every year like clockwork, until your retirement nest egg is decimated. Find out whether the drug company making the drug you need offers assistance.
Educate yourself on the latest drugs available and know what uses and types of cancer for which they were approved by the FDA. Know what the appeals process is when your insurance company says no.
Stay in touch with the American Cancer Society through their website (http://www.cancer.org). They have information on assistance available for patients who are having financial problems. That includes housing and transportation. The National Cancer Information Center has a 24/7 hotline available 365 days a year (1-800-227-2345) and also offers live chat on the ACS website.
While these are practical actions we can take, they have an emotional and mental impact on us. We don’t have to feel helpless or at the mercy of strangers who don’t know us and are paid to reduce a company’s expenses. We can empower ourselves to act as our own advocates.
A major caveat to this: No matter who you’re dealing with, be kind. Be patient. Be courteous. Take the high road. Remember that the person on the other end of the phone is only the messenger. Say please and thank you. Your blood pressure will come down and you’ll feel better about yourself. Don’t let the situation take your basic humanity from you.
My oncologist told me a story about a patient she urged to call her insurance company when responses dragged. A few days later the patient called my doctor and said she wasn’t doing chemotherapy. She’d been given such a runaround by her insurance company that she decided to quit. My doctor had to talk her off the ledge.
Don’t go out on that ledge. Dig in your heels and keep calling, keep talking, keep learning. Rest and then come back for more. Take deep breaths. Listen to music while on hold. Count your blessings while you wait. Imagine the person on the other end of the line and what her day’s been like. Fight for a human connection. Most of all, remind yourself that your family and friends love you and need you to stick it out for the long haul. If nothing else, you’ll know you did everything you possibly could to help yourself. You’ll feel empowered because you are.