Cancer is the leading cause of death in Japan. But what if there was a vaccine that could prevent a certain type of cancer? And what if it was free?

Mika Matsufuji’s daughter received a free vaccine to prevent cervical cancer from Suginami Ward when she entered junior high school in the fall of 2011. As a parent, she didn’t think twice about accepting the offer — a decision she says she will regret for the rest of her life. Her daughter has suffered severe complications from the inoculation ever since.

Cervical cancer is mainly caused by the human papillomavirus (HPV) and is sexually transmitted. The Ministry of Health, Labor and Welfare estimates that about 8,000 women are diagnosed with cervical cancer every year, with 2,500 dying from it.

The relatively new HPV vaccine to prevent cervical cancer was first approved in the U.S., Australia and other countries in 2006. Japan followed suit in 2009. It involves a total of three inoculations and is recommended for young girls aged 12 and 13 years old.

Matsufuji’s daughter was 12 when she was vaccinated. The first inoculation was uneventful but the second caused her arm to swell up and she experienced pain all over her body. She suffered from convulsions and was even confined to a wheelchair as she couldn’t walk. And as if the obvious physical complications weren’t hard enough to deal with, she had difficulty completing certain mathematical tasks.

“I had always believed that vaccines were necessary for public health. I was amazed to see a ground-breaking vaccine developed that is able to prevent cervical cancer,” Matsufuji says. “I feel so guilty for putting my daughter through all of this. Her whole life may be ruined.”

Starting April 1, 2013, HPV vaccine was added to the national list of routine vaccinations by law. Parents were advised to get their children vaccinated at a government-approved site that didn’t charge for the cost of inoculation. Three months later, however, the government withdrew its recommendation after reports of complications surfaced.

According to the health ministry, a total of 2,475 cases involving complications have been reported through the end of March this year, of which 617 were judged to be serious.

Toshie Ikeda, a member of the Hino Municipal Assembly in western Tokyo, backs the government’s decision to halt HPV vaccinations. Together, Ikeda and Matsufuji launched a victims’ support group in March 2013 and they have been calling on the government to scrap the HPV vaccination schedule ever since.

“The HPV vaccine was advertised as a prevention for cervical cancer and it’s good that citizens and government officials are becoming more rational about it,” Ikeda says. “The reality, however, for people who have suffered complications after inoculation remains the same.”

The support group currently has 287 members and operates six branches across the country, including Hokkaido and Kumamoto.

In October, they will officially open another branch in Osaka.

“(Children who have suffered complications) liken the pain as being similar to having their head split open with an ax … but it is difficult to imagine since no one else can feel that pain,” Ikeda said. “At least the girls who have described such pain are old enough to detail how they feel. Most vaccinations involve infants and all they can do is cry.”

Three years have passed since Matsufuji’s daughter received the HPV vaccine. In May, the government acknowledged her disability and she now carries around an official ID book.

“It’s still a shock. I never thought my own daughter would become disabled,” Matsufuji says. “It’s as if time has stopped since the vaccine. She used to live a normal life, but she hardly has any friends now and rarely hangs out with them.”

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