Cost of precision medicine can mean tough choices
Cutting edge treatment is at the forefront of cancer research
When Kristen Kilmer was diagnosed with incurable breast cancer at 38, her first thought was of her 8-yearold daughter.
Kilmer lost her own mother as a teenager and was determined to get more time with her only child.
The South Dakota woman searched for experimental treatments, and opted for an unproven approach in which researchers choose drugs based on the genes in patients’ tumors. Doctors have selected her treatments for the past three years based on the unique, ever-changing DNA of her cancer cells.
Kilmer, now 41, 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 approach “precision medicine.”
Kilmer’s insurance company calls it experimental.
As a consequence, her insurer has covered only a fraction of her care, forcing Kilmer to make an agonizing choice: stop taking a drug that costs nearly $17,000 a month, or pay out-ofpocket, 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 Kilmer, of Spearfish, South Dakota. “Or do you stop taking it to avoid causing her financial harm?”
Precision medicine is one of the most celebrated areas in cancer research. But the high cost of cuttingedge tests and treatments is threatening to keep it out of reach for many patients.
Dr. Scott Ramsey is director of the Hutchinson Institute for Cancer Outcomes Research in Seattle. Patients who pay for these new treatments on their own, he said, “could be in debt for decades.”
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.
But few private insurers cover the tests, leaving some patients with surprise medical bills.
Yet paying for that initial test is just the beginning.
As Kilmer learned, finding the money for ongoing treatment is far more challenging, said Dr. Gary Lyman, who studies way to improve health care quality at Seattle’s Fred Hutchinson Cancer Research Center.
In some cases, genomic tests match patients to experimental drugs available only in clinical trials. Although these trials sometimes provide free medications, many cancer patients can’t afford to travel to participate in them.
Without insurance coverage, some cancer patients simply give up on treatment.
A study of more than 1,000 women with advanced breast cancer – presented at a September meeting of the American Society of Clinical Oncology – found that 54 percent had stopped or refused treatment because of cost.