When beating cancer costs $17,000 a month, what do you do?

Enormous price of ‘precision medicine’ forces patients to make agonizing choices

When Kristen Kilmer was diagnosed with incurable breast cancer at age 38, her first thought was of her 8-year-old 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 chose 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 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-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 Kilmer, of Spearfish, South Dakota. “Or do you stop taking it to avoid causing her financial harm?”

Precision medicine is one of the most celebrated areas in cancer research. But the high cost of cutting-

“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?’ Or do you stop taking it to avoid causing her financial harm?” Kristen Kilmer,

cancer patient

edge tests and treatments is threatening to keep it out of reach for many.

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 find mutations that might be susceptible to available drugs.

Although the field 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 Affairs.

But few private insurers cover the tests, leaving some patients with surprise medical bills.

Kilmer’s genomic tests identified a rearrangement in the PALB2 gene. Preliminary studies suggest that tumors with this genetic rearrangement could be susceptible to the drug Lynparza, but those effects haven’t been definitively proved in large-scale studies. The Food and Drug Administration has approved Lynparza only for breast cancer patients with a mutation called BRCA.

Drugmakers have been generous, allowing Kilmer to take a rotating cocktail of experimental drugs for free because her income is modest. In September, however, AstraZeneca decided to end Kilmer’s financial aid. Kilmer appealed the drug company’s decision.

Paying thousands of dollars a month was not an option, Kilmer said. Her family already carries significant debt from earlier cancer treatments.

Kilmer stopped taking Lynparza. If AstraZeneca rejected her appeal, she would rather have gone without the drug than financially burden her daughter and husband, a truck driver. “It’s not worth it,” Kilmer said. Insurers say costs aren’t their only concern. They argue that there isn’t enough evidence that precision medicine will work consistently.

Without insurance coverage, some cancer patients give up on treatment.

Without insurance, she said, “you and I would not be able to afford these medications. It’s a huge barrier.”

After Kaiser Health News began researching Kilmer’s story, her oncologist told her that AstraZeneca had agreed to continue providing Lynparza for free. “It’s a huge relief,” Kilmer said. Kaiser Health News (KHN) is a nonprofit news service covering health issues. It is an editorially independent program of the Kaiser Family Foundation that is not affiliated with Kaiser Permanente.

KHN’s coverage of prescription drug development, costs and pricing is supported in part by the Laura and John Arnold Foundation.

PHOTOS BY KRISTINA BARKER Kristen Kilmer, diagnosed with incurable breast cancer three years ago, hugs her daughter at their home in Spearfish, S.D.

Kilmer’s daily medications include Lynparza, center, which costs nearly $17,000 a month and has not yet been shown in large-scale studies to treat her cancer.