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
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
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
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
"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
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.
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
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.
The Japan Times: June 13, 2004