A hemophiliac who achieved fame through his dogged fight to make the government accountable for the use of HIV-tainted blood products is picking a fight again, this time over Tokyo’s handling of hepatitis C.
Satoru Ienishi, 43, has long been the symbol of a grassroots campaign to win restitution for hemophiliacs who were infected with HIV through the use of unheated, tainted blood products.
After winning a landmark settlement in 1996, Ienishi entered politics, serving as a House of Representatives member for seven years until his term expired in November.
He plans to run in July’s House of Councilors election.
Through all these years, however, he has had another illness to keep at bay.
Ienishi was infected with hepatitis C from a tainted blood product he had taken to treat hemophilia; it caused him far greater physical pain than HIV.
While Ienishi was eventually cured of the disease, an experimental treatment he underwent in the late 1990s inspired a variety of side effects.
His temperature shot up to nearly 40 every time he was administered the drug. He also suffered from exhaustion, irritability, hair loss and itchiness in his back.
Yet Ienishi is lucky to have spotted the disease early. The problem, he says, is that most people with hepatitis C are unaware that they have the virus.
Around 2 million people are thought to be infected with hepatitis C in Japan.
Hepatitis C virus (HCV) normally takes 20 or 30 years to become active and shows no symptoms early on.
In most cases, the symptoms are not acute and people may not be aware they have the disease. Left unattended, however, it has a high likelihood of leading to cirrhosis or liver cancer.
“People have long believed hepatitis as something caused by excessive drinking or an unhealthy lifestyle,” he said. “But in almost all cases, hepatitis C is caused by viral infections. And who would have known that mandatory vaccinations many people went through in schools were a major source of HCV infection?”
Most of those infected with HCV in Japan are in their 50s or older. This is because many contracted the virus in the early postwar years, when the sharing of needles in group inoculations at schools and at clinics was common, experts say.
Ienishi’s recent campaigns have focused on pressing for government action to identifying the victims of HCV infection through products made from fibrinogen, a blood-clotting agent used to treat hemophilia and for a broad range of surgical purposes.
In 2002, 16 people sued the government and several drug makers, claiming they were infected with hepatitis C through infusions of tainted blood.
Many are mothers who were given the drug to stop bleeding during labor.
Their story bears an eerie resemblance to the HIV fiasco involving hemophiliacs. The U.S. Food and Drug Administration in 1977 withdrew its approval of products made from fibrinogen, citing the dangers of hepatitis infection and the availability of less dangerous alternatives.
But the Japanese government, which approved fibrinogen in 1964, continued to let doctors use the product, made from blood sold and pooled in the U.S., according to lawyers supporting the plaintiffs.
Since 1980, at least 290,000 people have been administered fibrinogen, distributed by Green Cross Corp., the same company that marketed HIV-tainted blood products. Of the 290,000, 10,000 are believed to have contracted hepatitis C.
In December 2002, Ienishi used information disclosure laws to target the Health, Labor and Welfare Ministry, demanding that it release the names of hospitals that stocked fibrinogen.
The ministry rejected Ienishi’s request, claiming this “would hurt the interests of the hospitals.”
Ienishi appealed the decision to an experts’ panel within the Cabinet Office, which last month ordered the ministry to make its data available to him.
Health ministry official Toshiaki Tomofuji said the ministry is asking 470 hospitals, which the ministry has confirmed as having stocked the product, whether they would consent to disclosing their names, as required by law.
According to Tomofuji, the ministry will probably release their names in April or May — a move Ienishi hopes will nudge more people to get tested for HCV.
But Ienishi remains dissatisfied. The 470 hospitals comprise only a small part of the 7,004 institutions nationwide to which the product was supplied — a figure given to the ministry by the successor to Green Cross.
The ministry, which claims it does not have a list featuring the names of 7,004 hospitals, has ordered Mitsubishi Pharma Corp., which absorbed Green Cross after a series of mergers, to report them, Tomofuji said.
But given the large number of hospitals involved, it would take a while to compile the information, he added.
Meanwhile, Ienishi fears the clock is running down on HCV carriers. For many of the people who contracted the virus in the 1980s through infusions of tainted blood, their condition should now be moving toward cirrhosis and liver cancer, he said.
“We are running out of time,” he warned.
“Early detection is crucial” for successful treatment of hepatitis, he added. “Give those who are slowly progressing their way to cirrhosis a chance to receive treatment, or things will soon get out of hand.”