Derek Neary
Northern News Services

Fort Liard (Nov 12/99) - "Hepatitis C isn't a 'bad' thing. I have nothing to be ashamed of."

That is Steve Malescu's conviction. A recently-elected board member with the Hepatitis C Society of Canada, he's hoping his message will help other Hep C victims feel more comfortable with themselves and those around them better understand their predicament.

"By speaking out and becoming active, what I'd like to do is prevent anyone else from getting it, and also people who do have it, help them deal with it," Malescu said.

Hepatitis C is a blood-borne virus that infects the liver and can be fatal. Complications such as kidney or thyroid disease may also develop. There is limited treatment and no known cure. Malescu, 49, survived a helicopter crash in 1986, but not unscathed. He lost his wife and a good friend. The pilot also perished. Malescu also sustained numerous broken bones and severe burns.

He became aware of his infection in the fall of 1996. Due to the multitude of surgeries and substantial volumes of blood he received following the helicopter accident, he had a growing concern about having possibly received HIV-infected blood.

A doctor in Yellowknife told him to have three HIV tests done over three years. He did. The first came back negative. The second came back negative. He was about due to give blood for his third test when he heard a radio broadcast about Hepatitis C while in Vancouver.

"When I went to the local nurse here to get my HIV test I said, 'You might as well get it checked for Hep C too,'" he recalled. "The third HIV test came back negative but, at the same time, it was positive for Hepatitis C."

Knowing very little about the disease, he received what scant literature was available from the local nurse. He later found out about the Hepatitis C Society of Canada and contacted them. In addition to providing him with plenty of information, they provided some welcomed support.

"It was a comforting voice on the other end of the phone ... they were there for me," he said. "Here I was sitting in Liard kind of all alone. The local nurse did what she could, but her hands were strapped too ... the federal government was basically in denial. The disease is just coming out of the closet now. Health Canada is finally recognizing it."

Malescu became a member of the Hepatitis C Society of Canada. A representative approached him earlier this year about becoming a member of their board of directors. He was interested and was elected to the position. Last month he attended a board of directors meeting in Toronto. Prior to that meeting Malescu had previously only met one other person who was afflicted with Hep C. Of the seven board members present in Toronto, six of them were infected the disease.

"Everybody had their story. One person on the board has had a liver transplant. One needs a liver," he said. "One fellow on the board received infected blood years and years ago and then donated (blood) for 10 years. When he went back to tell them, all his blood donation records had been destroyed. So now not only is he living with the disease but the guilt of infecting God knows how many people."

Another member of the board from New Brunswick had been an operating room nurse. After she received infected blood, she lost her job and is now living in low-income housing and receiving welfare, according to Malescu.

"These stories just astounded me," he said. "It was tough for me to sit around and hear these stories and be with these infected people and I was probably the healthiest of the bunch."

Malescu, who now has his blood checked every three months, is classified as a healthy carrier. A guard for the RCMP, he has shown no symptoms of the disease except for fatigue. The disease primarily attacks the liver, which generally deteriorates from healthy to infected to fibrosis (enlarging and hardening) to cirrhosis and then cancer develops.

"And then death," he said, his voice trailing off.

Despite the grim prognosis, Malescu said he doesn't fear death. After the helicopter accident he said he came to realize that life can end at any time.

"I try and live my life to the fullest ... I won't die feeling I should have done this, or I should have done that," he said. "So I'm not scared. If I die tomorrow, that's fine."

The federal government has created a compensation package for those infected with Hepatitis C between 1986 and 1990, he noted. However, he isn't bent on pursuing remuneration for himself, he said. There's a lesser chance he may have been infected with Hep C in 1960 when he underwent open-heart surgery.

"Either way, if I was infected in 1960, so far I've had 39 years of life out of it. If I was infected in 1986, I've had 13 years of life," he said. "Both times I was in a life-threatening situation and needed the blood products. Basically, they saved my life. So if I receive compensation, fine, it's kind of a bonus. But also the life I've had since is also a bonus."

In the Northwest Territories, the expenses for drugs such as Interferon that treat the symptoms are covered as are doctor's visits, Malescu noted.

"There's no national standards for treatment or care," he said. "The Department of Health and Social Services should get some credit here. They offer Hepatitis A and B vaccines to people free of charge. They also offer treatment to Hepatitis C victims free of charge."

The GNWT has also begun a lookback/traceback program in an attempt to identify those infected. As well, they are moving to add Hepatitis C as a specified disease under the extended health benefits program, he added. That would see them offer co-payment to cover travel to appointments with specialists, he said.

Yet there's been nothing mentioned in the NWT about compensation for pre- 1986/post-1990 victims, he noted.

He has made it his role to be vocal about the condition. Being a blood-borne illness like AIDS, which received reams of sensational press, Malescu said there is a stigma attached to Hepatitis C. That's preventing some people who are infected from stepping forward, he suggested.

"Part of the whole reason for the (Hepatitis C) society is to educate people about this disease and prevent paranoia," he said.

Malescu has become a telephone support person for those in the North who have been infected with Hepatitis C. He welcomes those calls and recommends dialing the Hepatitis C Society of Canada as well at 1-800-652-hepc (4372).