Karen Milano is telling her nurse from Hospice of the Western Reserve about past problems she’s had undergoing various treatments for terminal colon cancer.
Milano knows navigating a cancer diagnosis can be incredibly complicated. But one aspect in particular that has weighed heavily on her is figuring out how to deal with the finances. Fortunately for her, she was somewhat familiar with the process because both of her parents had died from the disease.
"I was glad that I had that experience taking care of my parents, because I was already trained," Milano said. "You need to check your medical bills, because you might be charged for things you shouldn’t be."
In recent years, many cancer drugs have increased in price, with one type of colon cancer drug costing up to $30,000 for an 8-week treatment. Coping with those skyrocketing costs, as well as the complexities of health insurance, has come to be known as financial toxicity, according to Dr. Neal Meropol of University Hospitals Seidman Cancer Center.
"Now, more and more it’s quite clear that there’s a new dimension of toxicity, of side effect, and that is the financial toxicity of cancer diagnosis and treatment," Dr. Meropol said.
A 2016 study out of Johns Hopkins University found that cancer treatment contributes more to U.S. health care costs than any other disease. And even cancer patients who are “covered” by Medicare are paying up to $8,000 a year for out-of-pocket costs.
Dr. Meropol says that adds up.
"When you have the stars aligning around increased cost-sharing, higher co-pays and co-insurance for patients’ higher deductibles on the one hand, and then high cost drugs on the other hand…it’s kind of the perfect storm in terms of impact on the patient’s pocketbook," he said.
Financial toxicity can also take a toll on the patients’ physical health, if they avoid treatments due to costs… or their mental health, which can be strained from the stress.
Addressing this growing problem may be as simple as assigning financial counselors to patients to help guide them through the process. But Dr. Meropol says that not all hospitals are equipped to provide each patient with a specialist who can decipher a personalized financial plan for them.
"There isn’t the kind of transparency and ability to predict all of the costs associated with care that you’d like to be able to hand to a patient," Dr. Meropol said.
For Karen Milano, learning how to cope with financial toxicity meant simply taking a certain amount of matters into her own hands.
"I’m telling people be your own patient advocate if you can," Milano said. "If you can’t, have a family member or someone you know and trust to go with you to your appointments, to take notes and record things, and to have your back."
Dr. Meropol says there’s a push among oncologists to play more of an active role in guiding patients financially. But he does note that patients can start by making decisions about their goals for treatment, or what’s most important to them… whether that’s survival at any cost, or better quality of life.