Seven years ago, Naomi Sakurai was diagnosed with breast cancer and told she had only a 60 percent chance of surviving another five years.
But Sakurai, 45, beat the disease and returned to the architects office she worked at, despite debilitating pain that made it difficult to even maneuver her computer mouse.
Though still undergoing treatment, she has thankfully remained in remission — but wasn’t lucky enough to keep her job.
“My boss told me they could no longer employ someone who is unable to make a long-term commitment” to the company, said Sakurai. “I decided to quit rather than wait to be laid off.”
The discrimination Sakurai faced is far from unique among Japan’s more than 3 million cancer survivors.
Although cancer has been the nation’s leading cause of death since 1981 and experts estimate half the population will suffer some form of the disease during their lifetime, it is no longer a death sentence — nearly 57 percent of patients who undergo treatment live at least five years on average.
However, cancer still carries a heavy social stigma.
The facts are disturbing: Though increasing numbers of workers are afflicted by the disease, there is no governmental support for those axed by employers because of their medical condition and no steps to prevent such blatant discrimination.
According to a survey of Japanese cancer patients conducted by American Family Life Assurance Co. (Aflac) last December, around 30 percent of the 362 respondents said they voluntarily resigned from their jobs after surgery, while 11 percent were dismissed.
In addition, some 30 percent said their annual salary was slashed, of whom 60 percent said their salary was cut by 70 percent and they were forced to either scale down or end their treatment because they could no longer to cover the expenses.
“Cancer has been so stigmatized that people do not understand patients can continue to receive treatment without needing to be hospitalized,” said Sakurai.
Refusing to view herself as a victim, Sakurai set up the company Cansol in 2008 to “sell cancer patients’ experiences.”
Cansol, whose four employees have all suffered cancer, trains survivors to give paid lectures about their experiences to life insurance companies seeking to better understand patients’ needs, in order to modify their policies accordingly. Those trained by the company deliver about 100 lectures a year to a variety of life insurers.
Sakurai’s firm also matches survivors with companies willing to hire them regardless of their medical history. This, however, has proved challenging.
Hisako Fujita, a certified social insurance labor consultant at Cansol, said pursuing companies that might agree to hire cancer patients will full prior knowledge of their medical histories is like entering uncharted territory.
Fujita, who survived breast cancer, said she has to accompany her clients to job interviews to ensure both parties are on the same page about the circumstances and potential requirements of those receiving treatment.
Critics point out that firms currently have no financial incentives to recruit cancer patients, unlike the subsidies they receive for hiring workers with disabilities. Businesses that employ people with HIV, for example, have gotten subsidies since 1998, but there is no such system in place for cancer victims.
The prolonged economic slump has meanwhile made it even harder for small and midsize companies to hire or retain cancer survivors, as the financial strain many of them are experiencing means they are unable to afford the minimum 50 percent of employee health insurance premiums they have to cover by law.
“I didn’t tell my company that I am a cancer survivor, as I was afraid I would be discriminate against during the hiring process,” said Yoko Ishii, who survived cervical cancer and now works as an event coordinator at Cansol.
But such fears and injustices may be eased in the near future, at least to some degree, as the government has finally started to address the issue.
In March, the health ministry compiled the Basic Plan to Promote Cancer Control Programs. It is slated for Cabinet approval by the end of June, according to ministry officials.
The plan, which incorporates input from Cansol and around 30 other groups fighting for cancer patients’ rights, sets a bold goal of creating a society in which survivors can live and work without fear of being fired or face other discrimination in society.
The ministry’s previous plans focused heavily on promoting cancer research and ways to alleviate patients’ physical suffering, but lacked any vision about the kind of life survivors should hope to lead.
“In addition to medical treatment, the new plan will also cover a wider range of problems cancer patients face, such as job insecurity, economic hardships and fewer educational opportunities,” a health ministry official said.
For starters, the ministry plans to launch a survey of workplace discrimination similar to the poll Aflac carried out — the first time it has taken such a step.
Other measures include the promotion of cancer education at businesses and schools to dispel current misconceptions and alter society’s prevalent negative perceptions.
Morito Monden, who chairs an advisory panel that helped compile the basic plan, said a lack of understanding about cancer is one of the root causes of workplace discrimination, because it breeds false assumptions about what survivors can and can’t do.
“Except for their medical history, cancer survivors are just like anyone else,” said Monden, also director of the Cancer Institute Hospital in Tokyo. “Japan has to learn that cancer survivors are also human beings.”
Still, the new plan is far from a panacea.
Monden noted that it fails to mention the urgent need for a nationwide registry of cancer patients so doctors and scientists can gather more data on the disease. As joining cancer registries remains voluntary in 45 prefectures, even the average five-year survival rate of 56.9 percent might be incorrect since it is based on data from only six prefectures — Miyagi, Yamagata, Niigata, Fukui, Osaka and Nagasaki — that account for just 13 percent of the nation’s population.
Establishing a national registry is vital so doctors and scientists can access the data necessary to compile more accurate estimates and devise better countermeasures, Monden said.
According to the ministry’s basic plan, a 50 percent cancer screening rate will be achieved within the next five years, while the number of smokers will be cut 40 percent by 2022.
However, no concrete measures are included as to how exactly these ambitious targets will be achieved, and they are not legally binding in any case.
Cansol’s Sakurai welcomed the plan as progressive but said that fleshing out the specific details is essential. She also noted that the government itself has a financial incentive at stake.
“As the government is lamenting declining tax revenues, they should alter the system and incentivize businesses so that patients can continue working,” said Sakurai. “Cancer patients are also taxpayers.”