When Kristen Kilmer was diagnosed with incurable breast cancer at age 38, her first thought was of her 8-year-old daughter. Ms. Kilmer lost her own mother as a teenager and was determined to get more time with her only child.
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Ms. Kilmer searched for experimental treatments, opting for an unproven approach in which researchers select drugs based on the genes in patients’ tumors. Doctors have selected her treatments for the past 3 years based on the unique, ever-changing DNA of her cancer cells. Now 41, Ms. Kilmer has responded better than anyone dared to hope. Her cancer has gone into hiding; her tumors are no longer visible on medical scans.
Researchers call the strategy “precision medicine.”
Ms. Kilmer’s insurance company calls it experimental. As a consequence, her insurer has covered only a fraction of her care, forcing Ms. Kilmer to make an agonizing choice: stop taking a drug that costs nearly $17,000 a month or pay out-of-pocket, burdening her family with tremendous debt.
“When you are looking at your daughter, you ask yourself, ‘Do I take a medication that might allow me to see her graduate high school?’ ” asked Ms. Kilmer of Spearfish, S.D. “Or do you stop taking it to avoid causing her financial harm?”
The high cost of cutting-edge tests and treatments is threatening to keep precision medicine – one of the most celebrated areas in cancer research – out of reach for many patients. Patients who pay for these new treatments on their own “could be in debt for decades,” said Scott Ramsey, MD, PhD, director of the Hutchinson Institute for Cancer Outcomes Research in Seattle.
Cancer care already is hugely expensive. A recent study in the American Journal of Medicine found that 42% of patients depleted 100% of their assets – an average loss of $92,000 – within 2 years of diagnosis.
Precision medicine involves running expensive tests called genomic sequencing, which scan the DNA of tumors to find mutations that might be susceptible to available drugs. Although the field is relatively new, hundreds of thousands of cancer patients have had their tumors sequenced to identify cancer-related mutations, according to testing companies.
Medicare, the government insurance plan for people 65 and older, announced in March that it will pay for genomic testing for people with advanced cancers – a decision that could add $2.5 billion to federal health care costs, according to a May analysis in Health Affairs.
Few private insurers cover the tests, leaving some patients with surprise medical bills.
Carrie Wyman, who also has advanced breast cancer, discovered that her insurance plan wouldn’t cover genomic sequencing only after she had received a $5,800 statement.
“I just assumed it would be covered,” said Ms. Wyman, 50, a resident of La Plata, Md., who has six children and stepchildren. “I was blindsided, to be honest with you.”
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Yet paying for that initial test is just the beginning. As Ms. Kilmer learned, finding the money for ongoing treatment is far more challenging, said Gary H. Lyman, MD, who studies way to improve health care quality at Seattle’s Fred Hutchinson Cancer Research Center.