In many ways, living with hepatitis C is similar to living with HIV -- both are viruses that begin with a dormant stage, but then they attack the human body and eventually kill you unless they are treated.
Treatments for hep C and HIV are quite similar, too. Both are highly invasive, but there is a 55 to 70 per cent success rate in ridding the body of the hep C virus entirely, while there is no "cure" for HIV. In other words, you live with the HIV virus and keep it under control with a drug, hoping it won't eventually become full-blown AIDS (and now there are even plenty of people living with AIDS because of a "prescription drug cocktail" which prevents the body's immune system from failing)
But I am told a big difference has developed between the experiences of HIV and hep C patients recently.
According to one of Manitoba's top liver specialists, Dr. Kelly Kaita, people who have hep C are living with a social stigma people with other treatable illnesses have been able to manage or overcome more effectively. Kaita says people with hep C are especially reluctant to talk about their illness. And that's what is making it a stigma.
About 250,000 Canadians have hepatitis C. The virus is spread through the blood so most victims got the illness from blood transfusions, before we started testing for it, and many were infected by sharing needles. No matter how you got it, you are sick and should be treated as such.
The most effective treatment for is a 48-week regimen that consists of a weekly injection of interferon and daily ribavirin pills (two or three in the morning and the same at night). The big problem is this treatment is a monster that knocks you on your arse.
There are about 150 possible side-effects. Most patients can expect to experience about 35 of them, and the most common are flu-like symptoms. Not just feeling "light-headed" or "off your game" but knock 'em down and drag 'em out influenza -- painful, aching joints, nausea that keeps you flat on your back in bed, fever, chills, dry heaves, headaches of the migraine kind and so on.
The more exotic side-effects include something called lichen planis, a horrible fungal infection that literally slices your tongue to shreds and turns your cheeks and gums red with a painful pimply rash.
Most people who decide to undergo this treatment have to make arrangements to take an extended leave from work or have a big enough savings account to cover living expenses for six months to a year. All of this becomes more difficult because, according to Dr. Kaita, patients with hep C are extremely reluctant to talk about it.
Maybe it's because AIDS attracted such high-profile support after it became known how devastating the effects of this killer illness were. At first it was "confined" to the gay community. Hollywood stars such as Elizabeth Taylor (and others who knew how powerful gays are in the film and television industry) created awareness and raised funds for research.
And when AIDS began to spread to heterosexuals, basketball star Magic Johnson jumped up and educated people about the dangers of unprotected sex while also making people aware of how simple it can be to prevent the spread of AIDS if you take some basic precautions.
Somehow hepatitis C got lost in the shuffle.
Hep C is only spread through the blood. Since it is socially accepted that people should protect themselves during sex, and there are sanitary reasons for not sharing a razor blade or even a toothbrush, it is easy to keep hep C to yourself in every way.
Some patients have said they have experienced budding romantic or sexual relationships cool as soon as they tell their prospective partner they have the virus. Co-workers and casual, even close friends, start to whisper about you if you share your experience.
So they suffer in silence. And isolation.
The hep C virus can lie dormant for years -- 20 to 30 is the average -- but inevitably it will attack your liver until this vital organ is so damaged you need a transplant or you die from liver disease or cancer.
When hep C becomes active, you stop being active, because along with all the other hepatitis symptoms (jaundice, tender abdomen, etc.), you are extremely tired all the time.
And the treatment makes you just as sick, and it is just as debilitating.
You become undependable, and you can only make so any excuses for missing work or the social events you used to attend so reliably.
Dr. Kaita feels there is a need to remind people that hep C affects a lot of our fellow Canadians and they are going through hell trying to deal with it.
They don't need a social stigma on top of all of that.
Don Marks is a freelance writer based in Winnipeg who is presently being treated for hep C but asks for no sympathy or understanding because he is routinely unreliable and has been blessed with some good friends.