Woman who lost son to HIV-tainted blood speaks out

The 10th Habataki Memorial Concert, launched in 2005 to convey the lessons learned from the use of HIV-tainted blood products that claimed the lives of hundreds of hemophiliac patients, will be held in Tokyo on March 5.

A 62-year-old woman who has supported the concert behind the scenes lost her eldest son as a result of the HIV-tainted blood products 19 years ago. Her second son, in his 30s, continues to struggle with the illness caused by the products.

Believing the damage and suffering caused by the tainted-blood products are not over, the woman decided to step out of the shadows and bring attention to the current situation of the victims.

The woman's eldest son died of AIDS in December 1994 at age 18 when he was a university freshman. It happened the day before he was to attend a Christmas party with his friends after receiving permission to temporarily leave a hospital where he was receiving treatment. He was looking forward to attending the event.

The son, a hemophiliac, was infected with HIV through treatment with tainted blood products.

"In those days, people believed you were doomed if you had AIDS," the woman said. "I couldn't tell my son the truth, as he was still a middle school student. But I think he understood the situation."

She said her son soon became nervous, telling her not to touch his blood, and he disliked watching news about the HIV-tainted blood scandal on TV.

Discrimination and prejudice against infected people were strong then. When her son entered hospital for treatment, young residents never touched his body, instead talking to him from a distance. She was instructed to discard her son's leftover food, she said.

In high school, her son was frequently absent due to high fever and diarrhoea. He excelled in mathematics, and passed an entrance exam of the engineering department at his first choice of university.

However, he attended the university for only four months. The woman was told by one of her son's friends that her son had confessed he would die soon.

"My son put on a brave front, but I think he must have felt discouraged," she said.

After her son died, she joined a class action lawsuit by victims as a plaintiff against the state and a pharmaceutical company, seeking damages over the tainted blood scandal.

Nearly 18 years have passed since the lawsuit was concluded, but the woman's sorrow over losing her son never dies.

About 1,800 people were infected with HIV from contaminated blood products used to treat hemophilia. Patients and family members filed a lawsuit against the state and a pharmaceutical company for compensation in 1989 and a settlement was agreed on in March 1996.

According to the Social Welfare Corporation Habataki Welfare Project that supports victims of HIV-tainted blood products, of 1,384 plaintiffs, 681 people have died.

Although AIDS treatment has improved, many victims are also infected with the hepatitis C virus and about 10 people die per year.

The woman's second son, who also was administered HIV-tainted blood products for treatment of hemophilia, was infected with HIV and the hepatitis C virus. He has been receiving treatment while continuing to work.

"The victims are still struggling with the illness," the woman said. Fearing discrimination and prejudice, the woman still cannot tell other people the real cause of her son's death.

The woman helped at the annual concert backstage by handing out items that she had made to supporters at the concert.

She was asked to talk about the current situation of victims at a round-table discussion at the beginning of the concert. After agonizing for a while, she agreed.

"The settlement [in 1996] is not an end to everything. I'd like many people to know that the suffering is ongoing," she said.

The concert will be held at Tsuda Hall in the Sendagaya district in Shibuya Ward, Tokyo, on March 5 from 6:30 p.m. Admission is ¥4,000 (S$49).