MEDICAL REDRESS

Shaking off ‘shame’

by Tomoko Otake

In a civilized society, people should not be scared to talk about their ailments — especially when the illness may have been contracted from medical product infected with a potentially fatal virus.

Yet in Japan, between 1980 and 2001, an estimated 10,000 people may have been infected with the hepatitis C virus (HCV) after being injected with a tainted blood coagulant during labor or surgery — but most choose to keep their condition secret.

In fact, only 72 have braved the stigma (HCD is often associated with drug addicts and alcoholics) to join group lawsuits now taking their course. And of those 72 plaintiffs, who are suing the government and the makers of the coagulant called fibrinogen, only eight have decided to make their names public.

One of those unafraid to reveal her plight is Michiko Yamaguchi, a 48-year-old part-time schoolteacher and mother of two sons. When she became the first plaintiff to go public in April 2003, she was firm about her decision: “I’ve done nothing wrong,” she said. “So, why can’t I have everything out in the open?”

A sense of urgency

While many people would say they fear losing their jobs, voiding insurance policies or forfeiting close relationships, Yamaguchi has been able to persuade some fellow plaintiffs to defy Japan’s culture of shame and speak out.

Compared to the high-profile post-transfusion HIV suits involving hemophiliacs in the early to mid-1990s, the HCV plaintiffs’ campaign has been relatively low-key. This is partly because HCV does not have an image of being immediately life-threatening. While untreated hepatitis can lead to lung cancer, it usually takes 15 to 20 years before visible symptoms of HCV appear.

However, for Yamaguchi, an elegant and unassuming woman from Fukuoka, there is a sense of urgency. In a recent interview with The Japan Times, she recounted what she has been through — and still goes through every day.

Even as a child, she said, her dream was to become an elementary school teacher, and she worked hard to realize that dream. Marrying at 25, she gave birth a son two years later. Life was good and fulfilling — until the day in September 1987 when she checked into a local obstetrician’s clinic to give birth to her second son.

As she went into labor, Yamaguchi said, she suffered a massive hemorrhage. She recalled that as she lay on an operating table, she heard a nurse calling out to someone else: “I’ll give her a shot to stop the bleeding.”

Yamaguchi had no idea that the coagulant in the syringe was tainted with HCV. She didn’t know, either, that the blood coagulant was produced by the Osaka-based Green Cross Corp, a now-defunct pharmaceutical company. At that time, Green Cross was becoming embroiled in a scandal in which the firm was blamed for infecting hundreds of hemophiliacs with HIV.

A few days later, though, Yamaguchi was told she was infected with HCV. She spent the next six months hospitalized. Though she didn’t appear to suffer adverse symptoms then, she said she was not allowed to cradle and breastfeed her new baby.

“I used to go up to the roof of my clinic every day, gazing at a nearby hospital building where my baby was being taken care of,” she said sadly.

When she finally returned to teaching, she realized that something had changed. Plagued by anxiety over the life-threatening infection, Yamaguchi could no longer give 100 percent.

On top of that, two years of outpatient treatment induced a range of side effects, including fever, diarrhea and fatigue. Climbing up stairs made her short of breath; she also lost three-quarters of her hair and had to wear a hairpiece.

Though Yamaguchi said her colleagues didn’t openly discriminate against her, they really didn’t support her or show much interest in her condition. She eventually quit her full-time job in March 2001.

After that, Yamaguchi said she might have lived a quiet life of shame forever — had she not read a newspaper article in October 2002 about a lawsuit over allegedly HCV-tainted fibrinogen. The unnamed plaintiffs told the paper exactly the same story as Yamaguchi’s — hemorrhage during labor, a shot of fibrinogen and then becoming infected with HCV.

Anger swelled inside her. She immediately dialed the hotline number given in the article. A lawyer answered and suggested she confirm the facts with her obstetrician.

Pent-up suffering

She hung up, then called the clinic right away. When the doctor answered the phone, she thanked him for “‘saving her life” all those years ago. The doctor asked her how she was doing, to which Yamaguchi replied matter-of-factly that she had chronic hepatitis and takes a blood test every month.

Yamaguchi gradually moved on to the point of her call: “You know, I bled massively and had a blood transfusion.” She didn’t mention the word fibrinogen.

The doctor suddenly blurted out, “Back then, every obstetrician used fibrinogen.”

“It was like, ‘I did it!’ ” Yamaguchi recalled. Fifteen years of pent-up emotions and suffering finally found an outlet.

It has been a year since she revealed her name in the group lawsuits, which are pending before district courts across the nation and are likely to drag on for years.

But today, Yamaguchi feels she represents all Japan’s faceless victims of tainted drugs. That includes those who haven’t mustered the courage to come forward, and those who tried to join the suits but couldn’t because their hospitals wouldn’t cooperate in their search for evidence.

While a long road lies ahead, Yamaguchi’s story is powerful testimony that, yes, we can have hope that the day will come when everyone in Japan will feel free to participate fully in their society.