HCV- The Taboo Subject

Originally written by Smilin' Sandi
Copyright, June, 1998

Some people may have skeletons in their closets, and when I was diagnosed with Hepatitis C in September 1995, mine all came back to haunt me. It was in the fall of 1977, the first time I tried injection drugs-cocaine was the first drug of choice. I would classify myself as an experimenter, rather than a physically-dependent drug addict. I never learned how to inject myself, sharing needles with either my heroin-addicted boyfriend or my girlfriend. When you're young, you do some stupid things sometimes. I always thought I was being careful though.

Not careful enough. Eighteen years after I first had a needle in my arm, I learned during a routine physical exam that I was infected with hepatitis C, an insidious deadly blood-borne virus that attacks the liver. I am among the highest-risk group who are composed of people who have shared needles to use drugs.

The virus is not only spread by using intravenous drugs (IDU) but also, some experts believe, by sharing the straws used to snort cocaine - a drug many North Americans in their forties and fifties have tried. Micro droplets of blood dislodged when a coke straw bumps the delicate capillaries inside the nose can be passed on the end of the straw.

Hepatitis C is already an inner-city and drug-user epidemic. Infection among IV drug users is estimated at up to 90% and in the prison population in Canada, hepatitis C infection accounts for one-third of the inmates. The virus has infected not only people who are at the lower end of the social and economic scale, but also plenty of those in the middle class. With the prevalence of recreational drug use in the sixties and seventies, and the two- to three-decade progress of the virus, many people are just discovering now that they are infected with this stealth disease, known as "the dragon".

I'm among those tax-paying, law-abiding solid citizens today paying the price for the sins of my youth. The virus is carried in the blood, and people with the infection can pass it on if their blood gets under the skin (open sores) or into the bloodstream of another person.  While IDU, past and present, is the leading cause of Hepatitis C infection, other modes of transmission are blood transfusions or blood products especially before 1992, tattooing, body piercing, acupuncture, electrolysis, dialysis, health-care workers accidentally pricked by a contaminated needle, manicures, pedicures, sharing razors or toothbrushes, improperly sterilized medical equipment and intranasal (snorting drugs), or sharing crack pipes.  Low risks occur in unprotected, risky sexual contact, in childbirth and from breast-feeding, if there is blood to blood contact.  I also have read that the hepatitis C virus has been found in stored blood from the forties. Some people go even further implying the possibility of chemical warfare, a conspiracy.

I decided after a lot of pondering to tell my liver specialist at my first visit that I had used IV drugs in the past. I assumed revealing this fact would benefit my care and their research. I didn't have to reveal my sordid history, since the virus was possibly caused by the injection of gamma globulin that I had received, after I contracted hepatitis B, two years prior to any drug use. That makes it acceptable in the eyes of society. I am disturbed by this self-righteous attitude a lot of people have towards ex-drug users and others who don't fit into society's perfect vision. My mistakes occurred over twenty years ago! Do I have to pay for those mistakes with my life? I am no less deserving of medical care as anyone else.

I would like people to understand the stigma involved with being an ex-drug user. I have honestly admitted to my past history of two years of illegal drug experimentation to my doctors. It seems irrelevant to the doctors that I had received a blood product prior to any drug use. The label is there and I'm stuck with it. It doesn't matter that I used drugs twenty years ago either. It is frustrating to always be on my guard, that I am not being overlooked for inclusion in a treatment program because there are other people "more deserving".

I have come forward to dispel the perception of former drug-users. With the support of my immediate family, I have been able to forgive myself for my past transgressions. I am not that person anymore. People can change to better themselves. I am trying to see the positive out of the negative. What I have learned from my past is compassion and tolerance for others.

I have been watching the news and reading the paper daily regarding the Krever report and the tainted blood issue. I sympathize with the people who did receive infected transfused blood and hope there is a light at the end of the tunnel, and they are all compensated accordingly.

My point is to show you the other side of the coin. I just want everyone to walk in my shoes and understand my feelings. Injustice is when the mere mention to someone that I probably acquired Hepatitis C through intravenous drug use is met with a certain demeanour of repugnance. It is like I get pushed back twenty years over and over. I am suddenly stuck in a mold that no matter what I'm like today, it doesn't seem to make a difference with a person's attitude towards me. Especially a doctor's opinion. I can't change my past. I need compassion and support just like anyone else.

It is important to concentrate on enlightenment in education and speaking out for research money in a cure for Hepatitis C. And to not discriminate people from treatment just because they may have acquired Hep C through drug use. These issues are just as important as the fight for compensation for the "innocent victims". More research should be done for the numerous people that got hepatitis through unclear means. The blood scandal is bringing to the forefront a disease which was not talked about and hopefully through the press it is getting, there will be more funds for research.

Today (1998) I am a respectable middle class, 41-year-old wife and mother of two sons, 8 and 16 presently living in Toronto, Ontario. I am university-educated and over the years I have worked as a nutritional consultant. My volunteer community service has involved being a parent teacher's assistant in primary classes, a French language teacher's parent assistant for grades 7-9, a Beaver leader and Group Secretary for Scouts Canada, a Sunday School teacher and Church Secretary.

I really want more than anything for people to get a different view of Hep C sufferers that may have acquired the disease from past drug use. A majority of us experimented decades ago and are only now manifesting symptoms of the disease. We are the baby boomers with respectable positions in society today. We have various careers including teachers, social workers, computer specialists, office workers and truck drivers. We deserve just as much respect from doctors and availability to treatment as the next person.

No matter how we contracted this deadly virus, whether through blood transfusion, or past IV drug use like myself, or unclear reasons, we are all in the same predicament. We are a large group of HCV sufferers that deserve mutual respect and all our voices to be heard.

Feel free to e-mail me. I will not judge you, but support you in your struggle not only with this "dragon", but the acceptance of you as a person. 

You are not alone in this battle.

Thanks for listening.

Copyright 1998.

Sincerely,
Smilin' Sandi :)
"Sandi's Crusade Against Hepatitis C"
Dragon Slayers of the Web Unite!                    

Sandi's Story Originally written 1997
Sandi's Tests/Results/Updates 2008

More Pages on Sandi's Site

Durham Hepatitis C Support Group
Hepatitis C Counselling Guidelines
"Hepatitis C" Essay by Sandi's son Copyright 2000
Medical Research Page
Memorial Page
Sandi's Proclamation Page for Hepatitis C Awareness
Transplant Page

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Last updated on 02/03/08