HEPATITIS C THE SILENT EPIDEMIC

Sufferers Feel Abandoned by Health-Care System

No matter how you catch it, you likely won't get the care you need to
deal with hepatitis C, experts and those living with the disease said
Tuesday.

Nor is the province doing much to prevent the spread of the disease,
they said.

That's bad news for the estimated 250,000 to 300,000 Canadians
infected with the disease, roughly 132,000 of them in Ontario. People
with hepatitis C will start dying at three times the current rate from
the disease within 10 to 20 years. The impact on the health-care
system will be enormous.

Many people who have the disease don't know it, and give it to others
unknowingly.

Ernie Zivny and Charles Duguay both caught it from blood transfusions.
Ron Forgett, a recovering drug addict, likely caught it from sharing
needles.

All three and thousands of others with the disease across Ontario say
they aren't getting the support and care they need. The men are taking
part in Giving Voice to the Silent Epidemic, a hepatitis C conference
taking place at the Howard Johnson Plaza. A full slate of
presentations is scheduled today.

Forgett was asked what the government is doing to help sufferers and
prevent the spread of the infection.

"The government is doing something? I wasn't aware of that," he said
sarcastically. "I feel that, essentially, there is nothing there is
not enough."

There are publicly funded advertisements on television for hepatitis A
and B, and massive awareness campaigns for HIV/AIDS, Forgett said. But
there is nothing similar for hepatitis C.

Dr. Peggy Millson, a public health physician and associate professor
with the University of Toronto's Faculty of Medicine, said there is a
fairly high incidence of hepatitis C in Greater Sudbury, especially
among intravenous drug users.

Between 60-68 per cent of those drug users have the
disease.

Millson conducted a major national study of the disease, which
included Sudbury.

Those with severe hepatitis C have intensive health-care needs, she
said, but our system doesn't have a high capacity for home care and
other services for people with chronic illness.

"The disease is running rampant in Sudbury," said Forgett. "There are
plenty of people who have it and plenty who don't know they have it.
And there are many who are scared they have it, but are scared to go
get tested. They don't want to know the result."

If our health-care system is in trouble now, said Zivny, just wait
until the full extent of hepatitis C is known.

"This is known as the silent epidemic," he said. "There are so many
people who don't know that they have it and so many who are spreading
the disease around."

Zivny said it costs more than $50,000 a year to treat a person with
hepatitis C and there are about 130,000 people in Ontario with the
disease.

"I had hepatitis C. I didn't know I had it. Can you imagine how many
other people are out there, who don't know they have it," he said.

Duguay said cuts to OHIP programs have severely curtailed services for
sufferers.

"OHIP is supposed to look after it, but every program of OHIP has been
cut back so much that unless you know the ropes intimately, you don't
get a chance to access any of it," he said.

An impaired driver hit Duguay in 1985 while riding his motorcycle to
work. While in grave condition in hospital, he received a blood
transfusion that contained the infection. He was diagnosed in 1992 and
it took 12 years for the disease to destroy his liver. He received a
transplant in 1997.

The anti-rejection drugs he takes are covered by OHIP, but there is
talk of taking them off the coverage list, he said.

"If they do that they are giving me a death sentence, because I am now
retired and my drug plan will not cover it," he said, who suffered
symptoms of chronic fatigue, mood swings, aching joints, itchy skin
and severe pain.

Ron Forgett said the fatigue is often so acute, he feels completely
drained.

"Pamela Anderson could walk into the room and I wouldn't have enough
energy to look at her that's how drastic it is at times," he said,
adding that hepatitis C is mistakenly thought to be a disease of drug
addicts and alcoholics.

In Sudbury, as in other urban centres, Millson said, cocaine use is
high, and binge drug injections poses a major risk for hepatitis C
infection.