On Oct. 6, 2005, when Nobuhito Kiyosato went to the Kanagawa Cancer Center, where he had been treated for kidney cancer since 2001, he was told there would be a major change in his treatment.
“My doctor told me the hospital could no longer administer LAK (lymphokine-activated killer) therapy” to boost his immune system against cancer that he had been receiving in addition to interferon, Kiyosato said.
The 60-year-old had been undergoing the LAK treatment — which was not covered by his public health insurance policy — since September 2001 when it was found that his cancer had spread to some bones in his head and cervical vertebra.
The center told him his LAK therapy must be stopped because a weekly magazine had carried an article alleging the facility practiced “kongo shinryo” for another LAK therapy patient.
Kongo shinryo, or balance billing for a combination of insured and uninsured medical treatments, is banned by the government.
Kiyosato found himself in a situation not uncommon for patients with life-threatening diseases such as cancer: relying on advanced therapy not yet covered by health insurance.
“I was hopeless (at the time). Without the LAK treatment, I thought my cancer might spread to other parts of my body and I might die soon,” said Kiyosato, who lives with his family in Fujisawa, Kanagawa Prefecture, and works three days a week at an industrial organization in Tokyo.
“I didn’t know much about balance billing. But I realized the hospital was not at fault — the government (ban on extra billing) is the problem.”
Aside from certain exceptions, the government bans medical institutions from conducting balance billing, which is also called extra billing.
This means public health insurance coverage is denied for insurance-eligible diagnoses, drugs, surgeries, other procedures and hospital costs when a patient simultaneously receives uninsured treatment, which is often expensive.
If a violator is deemed malicious, the health ministry can revoke a hospital’s participation in the public health insurance program for up to five years.
In Kiyosato’s case, the LAK therapy was not covered by public health insurance, while the interferon was.
Before the magazine article came out, the cancer center was charging Kiyosato about ¥70,000 a month, or 30 percent of the total cost for the interferon treatment. The LAK therapy was free because the center considered it a research expense, according to Kiyosato.
He learned that if he were to continue on the LAK therapy — which would normally cost about ¥500,000 a month — he would have to pay the full ¥250,000 a month for the interferon treatment.
While scaling back his treatment to what was covered by public health insurance, Kiyosato sought a court judgment on the ban.
First he looked for lawyers who would represent him. But a group of lawyers in Yokohama and another group in Tokyo, both of which work on medical-related cases, turned down his request, claiming they were either too busy or that they did not have the resources to handle the case.
He ended up filing a lawsuit on his own with the Tokyo District Court in March 2006. He argued that he has the right to use his public insurance policy to cover his interferon treatment and that the government ban on balance billing is unconstitutional.
He had to wait a year before the court held its first session on the case. During that period, the court asked him to submit added documents detailing his demands and the losses he incurred due to the government ban.
“This year of waiting was most difficult for me,” Kiyosato said. “I didn’t care if I would win or lose the case. I just wanted a court judgment on this problem.”
Balance billing has been banned since the public health insurance system, which is supposed to provide uniform medical treatment to all people at uniform prices, was fully established in 1961.
The Health, Labor and Welfare Ministry says that if the ban on balance billing is lifted, profit-hungry health providers could try to push uninsured treatments and drugs on their patients. It could result in a deterioration of the quality of medical services — including safety and effectiveness — and increase the cost burden on patients, according to the ministry.
The health ministry screens and approves treatments and drugs that are covered by public insurance.
While the prices of insured therapies and drugs are set by the government, medical institutions and pharmaceutical makers are free to set their own prices for uninsured drugs and treatments, including advanced therapies and private hospital beds.
Kiyosato argues that the ban on balance billing threatens the lives of patients who can’t afford the enormous medical fees if they are charged the entire cost for insured treatments plus fees for expensive uninsured therapies. It also diminishes the right to receive benefits from public health insurance for which they have paid, he said.
The health ministry says the ban is legal under the health insurance law. But the government has also designated a wide range of advanced medical treatments as exceptions to the ban to enable patients with serious ailments to receive uninsured treatment along with insured therapies, a ministry official said.
While Kiyosato’s LAK treatment is not among the exceptions, the list has been expanded in recent years. This came about when a government panel on regulatory reform in 2004 was going to propose removing the ban on balance billing. The move was thwarted by opposition from the health ministry, which instead expanded the exceptions for the ban to cover 125 types of advanced therapies and unapproved drugs.
Kiyosato could have gone to a different medical institution and received an alternative uninsured therapy designated as an exception, the ministry official added.
After four sessions, the court ruled in November that there is nothing in the health insurance law that says Kiyosato’s public insurance policy cannot cover his interferon treatment even if he received the uninsured LAK therapy at the same time.
However, the court did not issue a judgment on whether the ban on balance billing is unconstitutional.
“I was relieved” by the ruling, Kiyosato said. “If I had lost the case, it would have been like saying that banning balance billing is right.”
But Kiyosato’s lonely battle continues because the state quickly appealed the ruling.
“This is not only my problem, but a problem for many cancer patients. It’s a matter of life or death,” said Kiyosato, whose condition has been stable in recent years.
“Even if the government keeps the ban on balance billing, it should come up with ideas to enable public insurance coverage to be used for patients” who need both insured and uninsured treatment, he said.