When the government began allowing hemophiliacs to self-inject blood-clotting agents in 1981, Satoru Ienishi thought “spring had finally come” to a life plagued by problems stemming from the condition.
At that time, Ienishi began enjoying life without several trips to a hospital each week for injections — unaware of the tragic consequences for the nation’s hemophiliacs that would be caused by tainted imported blood products.
“Besides having to inject the coagulant myself once a week, I was able to live like a normal person for the first time at the age of 20,” said Ienishi, now a 40-year-old member of the House of Representatives. He had earlier been told by doctors that he might not live to the age of 20.
But in 1987, Ienishi tested positive for HIV after contracting the AIDS-causing virus by injecting HIV-tainted blood products imported from the United States.
While Ienishi could live with hemophilia, which is hereditary in his case, he could not forgive Japan’s medical authorities. He contends the irresponsibility of those authorities caused his infection.
“I will never forgive those who had us contract HIV by ignoring our years of petitioning for the use of safer coagulants,” he said.
In 1983, a group of hemophiliacs had filed a petition with the Health and Welfare Ministry to replace the unheated blood products from the U.S. with safer alternatives. While the ministry gave the go-ahead for heated blood products in 1985, it failed to order a recall of unheated products.
In 1989, Ienishi, a native of Nara and one of about 2,000 hemophiliacs who contracted HIV from tainted blood products, led an Osaka-based group of plaintiffs in filing a damages suit against the government and five drugmakers that marketed the products.
Their efforts brought a landmark settlement in 1996 — the government and the five drugmakers agreed to pay 45 million yen to each plaintiff.
Ienishi was elected to the Lower House on the Democratic Party of Japan ticket the same year. He successfully pushed the Health Ministry into allowing HIV carriers into the disabled category, ensuring a greater portion of their medical expenses would be covered by public health insurance.
Ienishi currently sustains his busy life as a Diet member by taking the “cocktail,” which involves a combination of three antiviral agents to maintain the immune system and prevent the onset of AIDS.
Ienishi also wants to make Japan self-sufficient in blood products to ensure a safer and more stable supply for hemophiliacs and other patients.
On a personal note, Ienishi realized a dream in July when his 33-year-old wife, Chikako, gave birth to the couple’s first child. The couple’s decision to have a child was controversial because of the risk the wife and child faced of contracting HIV.
Ienishi, however, said he had no option but to obey a “natural desire to have children with someone you love.” Neither the daughter, Reina, or Chikako contracted the virus.
“I may look happy today, but I have a responsibility to both my occupation and my daughter, which in turn forces me to face the reality of death,” which may approach at any time, said Ienishi. He was also infected with hepatitis through the unheated coagulants before 1989.
After Ienishi became a Diet member, his job as leader of the Osaka plaintiffs in the HIV lawsuit was taken over by Jugo Hanai, 39, who works for an organization to support hemophiliacs.
Hanai angrily recalled a meeting in March 2000, between HIV-infected hemophiliacs and Health Ministry officials — a followup to the 1996 settlement. Prior to the session, the government had refused to cover the 30 million yen in medical costs incurred by his hemophiliac friend for an intensive treatment program.
At the meeting, Hanai and his friend asked the officials to extend public assistance to cover costly treatment for hemophiliacs suffering from AIDS symptoms. They were refused, however, on grounds there were insufficient state funds, according to Hanai.
“The medicine was absolutely necessary to help him overcome the critical health condition brought about by AIDS, which he contracted through tainted coagulants,” Hanai said.
While the government promised in the 1996 settlement to do its utmost to help those who contracted HIV through the unheated coagulants, Hanai said the government’s commitment to this ideal seems to have wavered.
Hanai also said the 1996 settlement has limitations because it focuses exclusively on medical treatment.
“The 1996 settlement was reached when one hemophiliac was dying from AIDS every five days, but the introduction of the cocktail treatment has since enabled us to live a long time with HIV.
“The patients now need more extensive care to continue living as members of society, such as counseling for employment, love and marriage,” he said.
But unlike many HIV carriers who successfully control the disease with the cocktail, Hanai has had to suspend treatment because it induces internal bleeding — a dangerous risk for a hemophiliac.
“Every HIV carrier has a different condition, requiring doctors and hospitals to take maximum care of each patient,” he said. “I hope our struggle contributes to the establishment of more patient-oriented medication in Japan, where medical authorities brought about the tragedy by ignoring patients.”
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