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Cancer front line / Fees hinder access to cancer genomics tests

The Yomiuri Shimbun

Cancer survivor Megumi Igarashi talks at her home in Eniwa, Hokkaido.

The Yomiuri Shimbun This is the third installment of a series on cancer genomics to see what the present and future of the field look like.

Last October, a doctor at the Hokkaido Cancer Center in Sapporo told Megumi Igarashi, 55, about a test that looks for cancer-causing genes. She was shocked to hear the cost: ¥650,000.

“Would you like to get a genetic test at Hokkaido University?” the doctor asked. Igarashi was tempted, but the doctor said public health insurance does not cover the cost, adding, “You’ll have to pay for it yourself, though.”

Since being diagnosed with ovarian cancer in 2012 and having her ovaries and uterus surgically removed, Igarashi has tried over 20 different anti-cancer drugs. Some did not work, and some had such strong side effects she could not take them. The cancer soon metastasized to her small intestine and spleen. Treatments had reached a dead end.

Cancer genomics makes it possible to simultaneously search for more than 100 different genetic mutations that may cause cancer and to determine which gene is the culprit for a particular patient. This allows doctors to choose the best drug for each individual patient, but except for research purposes, the test is provided at only a few hospitals in Japan.

Patients must also bear the full cost. Although Igarashi’s two children are both grown and working, they still have another five years of mortgage payments left. She wants to help pay for her daughter’s wedding, and has no leeway in her daily expenses.

“Let’s just forget it,” she thought. She did not want to burden her husband just for herself.

But when she told her husband Morimasa, 59, about the test, he immediately replied: “Don’t worry about the money. If it’s for your treatment, I don’t care if we use up our savings. Get the test.” They ultimately withdrew money from savings they had accumulated over 10 years for their postretirement life.

Patients can receive this kind of genetic testing at their own expense at universities, including Hokkaido University, Kyoto University, Chiba University, Juntendo University, Yokohama City University and Okayama University. The Hokkaido Cancer Center introduced the test last month. Some universities provide the test free of charge for research purposes, but only a few.

As Igarashi experienced, high costs hinder patients in situations where medical treatment is not covered by public health insurance. The total cost of the cancer test varies from hospital to hospital, but it ranges from ¥400,000 to ¥1 million, too much for the average person.

Even if the genetic test is done and a drug is found to treat the cancer, the patient will have to bear the cost of the drug if it is unapproved. This costs from ¥1 million to several million yen a month.

There is a public support system in case a drug covered by public health insurance causes any side effects, but the system does not cover patients who bear the cost of their own treatment.

For example, there were 155 patients who received genetic testing at Kyoto University Hospital over the two years through April 2017. Genetic mutations that helped select appropriate drugs were found in 122 people, or 80 percent of the total.

However, only 18 actually received treatment. Among the others, some people gave up on treatment due to worsened health conditions or unaffordable costs.

Kyoto University Prof. Manabu Muto, an expert in cancer drugs, said: “Even if a drug is found, patients often have to pay for the drug, as well as the test, by themselves. We need to make sure patients understand this.”

The Health, Labor and Welfare Ministry is considering having the genetic testing covered by public health insurance as early as in fiscal 2018. However, this will likely be limited to about seven hospitals capable of offering advanced cancer treatments.

In Igarashi’s case, a cancer-causing gene was found in the test and an appropriate drug will likely be approved for insurance coverage soon.

“I’m happy to know there’s still hope, but I caused a lot of trouble for my family,” she said. “I hope things will change so everyone can receive the test without worrying about money.”Speech

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