Cancer is one of the leading causes of death and disease in the U.S. The American Cancer Society (ACS) estimates that there will be roughly 1.7 million new cases of cancer in 2018, and 609,000 deaths. The disease undoubtedly puts a huge amount of psychological stress on patients and their families, and for many, the financial cost of cancer care can be equal to or surpass the emotional one.
In April of 2016, Jackie Froeber was editor in chief of two magazines in the American Airlines portfolio, had won numerous publishing awards and was on top of the world. The next month, the then 33-year-old was diagnosed with stage-three breast cancer.
“Aside from the shock of being told I had breast cancer, I was blindsided by the costs,” Jackie says from her home in Dallas. “When you see an itemized list of what everything costs, it’s very overwhelming.”
The true cost of cancer
According to a 2017 report published by the ACS’s Cancer Action Network, in 2014 American cancer patients paid nearly $4 billion out-of-pocket for cancer treatment. The type of insurance a person has can greatly impact the amount they pay out of pocket. The report found that cancer patients with individual insurance plans paid almost twice as much as patients with employer sponsored plans.
A 2017 survey conducted by Milliman for Pfizer found that average out of pocket (OOP) costs spike dramatically immediately after diagnosis. For some types of cancer, they reach more than $1,000 in the month of diagnosis alone.
Not surprisingly, many consumers don’t have the financial resources to cover the costs of cancer, even if they have insurance. A 2016 survey by the Kaiser Family Foundation and the New York Times found that people with health insurance coverage reported problems paying their medical bills almost as often as people without it.
It’s no wonder then that about half of all bankruptcies in the country are medical debt-related. In fact, according to the Milliman report, cancer patients are two and a half times more likely to file for bankruptcy, and patients who file for bankruptcy are more likely to have received cancer treatment. But don’t lose heart. We’ve gathered expert advice on how to become your own best advocate.
Ask questions about the cost of cancer treatment
Cancer treatment is expensive. There’s no getting around that fact, but being prepared and informed can bring a sense of control to what can seem like an uncontrollable process, while decreasing the chance of being hit with unexpected costs.
“The first thing we say is call us, talk to our office,” says Joshua Hickman, Senior Practice Manager for Norris Cotton Cancer Center at Dartmouth Hitchcock. “We encourage patients to be proactive. A hospital is just as involved in your finances as your healthcare. Your doctor may not know the answer but someone will; we have whole departments dedicated to this.”
Hickman says the first thing a newly diagnosed patient should do is to focus on and understand their health insurance. He advises calling the insurance company to get detailed information on copayments, deductibles and coinsurance (the percentage of costs the patient is responsible for). Also, find out if treatment must be done at a specific medical facility.
Once there is a clear picture of the insurance coverage and a treatment plan, Hickman says your care facility should be able to give you an estimate of your cost of cancer treatment.
“We can basically tell you how much you’re going to be responsible for based on your insurance plans,” Hickman says. “Some hospitals’ websites will have an online tool to help you see exactly what you could be paying.”
Be prepared for out of pocket cancer costs
Aside from the immediate costs of medical treatment, patients also need to focus on secondary costs and the logistics of their treatment, advises Caitlin Donovan, Director of Outreach & Public Affairs at the Patient Advocate Foundation, a non-profit organization that provides professional case management services to Americans with chronic, life threatening and debilitating illnesses.
Stay in network
As anyone who has ever dealt with medical bills and insurance companies knows, the system is complicated but highly specific. For instance, it may seem simple to choose a hospital in-network, but what if some of the doctors in that hospital are out of network? What if the hospital sends tests to a lab out of network?
“The biggest costs are out of network costs, so newly diagnosed patients should try to stay in network as much as possible,” Donovan says. “Think about staying in network and how far you have to go to do that and how much will it cost to get there. Transportation is the number one issue that patients call us about. The average amount patients need in rural areas for transport is $22 each way to go to chemo treatment.”
“If you need surgery, there could be a lot of unexpected costs,” Donovan says. “Make sure that everyone is in network, including the anaesthesiologist; check on all of them individually. You have to make multiple phone calls. It’s amazing how often people don’t know if they are in network. You need to ask.”
Consider childcare costs and other expenses
Also consider whether your childcare costs will increase, or if you can find a friend or relative to help out for free. Think about other new costs that may come up. For instance, it may hurt to pull things over your head after surgery, so you’ll need to buy new clothing. And if you’re getting chemo, decide who will drive you and think about that person’s availability. Above all, she says, keep your doctor informed.
“If you have cost concerns, tell your doctor. It really should be part of who you are and what your needs are as a patient,” Donovan says.
Take into account time off work
She also said to consider how much time you’ll have to take off of work for treatment and to speak to your HR department about how much you need to work to keep your insurance coverage.
Hickman advises patients to learn how to protect themselves in the workplace, and to have conversations upfront about your benefits beyond insurance, including either short or long term disability.
“People have high hopes that cancer is not going to take them down, but there will be those days when you just want to stay in bed,” Hickman says.
In fact, a 2006 study by the Department of Health Administration at Virginia Commonwealth University found that women treated for breast cancer missed an average of 44.5 days of work and men diagnosed with prostate cancer missed an average of 27 days. Overall, oncology patients are likely to miss 22 more days of work per year compared to those who don’t have cancer.
Know your rights
Some employers may be required to let you work a flexible schedule to meet your treatment needs. The ACS offers information through these links: the Americans With Disabilities Act and the Family and Medical Leave Act.
Pay attention to cancer drug costs and rules
Hickman cautioned that there are also numerous rules that can result in huge bills. For instance, some insurance plans require patients to receive drugs mailed from a specialty pharmacy, and the patient is then responsible for bringing the drug to the care facility.
“If you don’t do it or understand what that means, and we inject you with our product, even if it’s the same drug, you are responsible for the entire bill. These injections are two to four thousand dollars, so make sure you know your insurance company’s wishes,” cautions Hickman.
There are other rules around where certain types of treatments are performed, and if the patient doesn’t follow the rules to the letter, they may not be reimbursed.
“Make sure you understand your coverage; cancer care can easily reach hundreds of thousands of dollars,” says Hickman. “You don’t want to be surprised by a bill for twenty thousand dollars from your insurer.”
Don’t be afraid to ask for help covering cancer costs
Jackie has been in remission for 1 year, and looking back, she says she wishes she had asked her doctor if she was eligible for any kind of cancer care financial assistance.
“Things like free prescriptions, free services (including rides to the hospital, volunteer therapy, gym memberships with specific breast cancer trainers) were all available in my area, and I wish I had applied at the beginning of my diagnosis,” Jackie says. “Even something as small as getting drugs covered for $30 a month really helps.”
The Patient Advocate Foundation’s Caitlin Donovon advises patients to ask for financial assistance directly from the hospital. Many hospitals have financial assistance programs, but often they won’t tell you unless you ask. If you don’t qualify for the hospital’s financial assistance, Donovan says to ask the hospital for a referral to an outside program that might help you. There are also charitable and for-profit patient advocacy organizations that focus specifically on helping patients with high medical bills
Jackie, who has been cancer-free for a year, also advises patients not to be afraid to call the insurance company if they believe a claim was denied in error.
“I’ve found it’s usually a coding issue, and the insurance agency will ask you to call your doctor’s office and have them re-file with the proper coding. It’s a pain. It takes a lot of time. It can feel like a second job. But it’s important to look at what they are charging you and what your insurance covers. People make mistakes all the time! We are all human—some of us a little more radioactive—but don’t be intimidated to ask how and why. There are million little costs when it comes to cancer treatment,” Jackie says.
Lastly, she recommends someone going through cancer treatment to ask their financial contact at the hospital to apply for any and all programs that they may qualify for.
Formulate a plan and advocate for yourself
Being diagnosed with cancer is a frightening and overwhelming experience, and worrying about the financial cost of cancer care adds another layer of anxiety. Just as patients need to formulate a step-by-step plan of action for their treatment, it’s equally important to take a systematic approach to paying for it all. Start by reviewing your health insurance, and pay particular attention to the rules around receiving treatment in or out of network, and the prescription coverage.
Next, speak to the appropriate person at your care facility to get a clear picture of your total costs. This is the point at which you want to ask them to assist you in applying for financial assistance. The key is to apply early, and be sure to ask about non-medical expenses as well, such as child care, transportation and therapy. If you don’t qualify for the hospital’s financial assistance program, ask for a referral to an outside agency.
There are numerous organizations out there to assist patients with all aspects of their cancer treatment, from the emotional impact to the financial burden. Don’t be afraid to ask for help—it’s more than likely your friends and family can support you through crowdfunding. You don’t have to go it alone.