When infectious diseases specialist Dr. Stephen Sacks opens his new clinic this week at the University of British Columbia, he will have no problem finding patients. For Sacks is opening Canada’s first clinic specifically for victims of herpes simplex type 2, a sexually transmitted genital disease which is rapidly gaining on gonorrhea as the most widespread venereal disease in North America. But, whereas bacteria-caused gonorrhea and syphilis can be cured with antibiotics, the virus-induced herpes cannot—an alarming reality that, compounded by ignorance on the part of doctors and shame on the part of patients, can cause sufferers to feel like sexual lepers. Thus the need for the Vancouver clinic, where Sacks is using experimental antiviral drugs as part of the worldwide search for a cure.
While herpes (from the Greek “to
creep”) has been around for centuries, the search for a cure has been spurred by recent research linking the herpes virus to possible deformity and death in newborn babies, cervical cancer and a variety of other serious physical complications. “So far,” says Sacks, “no therapy has been shown to work for genital herpes. Symptoms disappear naturally in any case, perhaps to occur again, perhaps not, which makes it very difficult to test any drug’s effectiveness.” Herpes first appears in the genital area—usually within two to eight days of contact with the virus—as small
red bumps which rapidly develop into painful ulcers and blisters. The sores usually heal within one to three weeks but may recur without warning months, even years, later. And, insidiously, the virus can be passed on even when the lesions are healed. Some victims have minor symptoms, or none at all, and don’t realize they are carriers.
Nobody knows how many people have genital herpes, but reports from doctors and venereal disease clinics suggest
that there are a half-million sufferers in Canada and another 20,000 to 25,000 new cases annually. Certainly newspaper and lifestyle magazine advice columns are full of anxious letters from herpes sufferers. The affliction has joined hypoglycemia and anorexia nervosa as surefire party conversation topics when all else fails. But for those who have the disease there’s nothing remotely sociable about it. Victims often become acutely depressed. Dr. William Brown, associate professor of psychiatry at the University of British Columbia, has counselled several herpes suf-
ferers. “Because of the illness’s intractability, they feel a social stigma, humiliation and anguish,” says Brown. “They are apprehensive and fearful about starting a new sexual relationship. If they tell the person about their herpes, will that end the relationship?” Their desperation can be so intense that in the U.S. people are advertising for herpes-afflicted sexual partners.
Most sufferers refuse to talk about the disease at all, and those who do insist on anonymity. A 27-year-old Vancouver child-care worker who contracted herpes three years ago got it so severely that she was unable to sit down for two weeks and was off work for a month. “It’s a real source of anxiety for me since other members in my family have had cervical cancer,” she says. “The recurrences are not nearly as bad but I still feel angry and bitter about it.” For another woman, a 30-year-old Toronto lawyer who 10 years ago was first diagnosed as having gonorrhea and eventually ended up in hospital for a month, the experience has been equally painful. “I can feel recurrences coming on. They seem to be associated with fatigue. It’s very demoralizing.”
While many victims have milder cases, they still suffer from the absence of ongoing medical assistance to help with the physical and psychological pain. Frustrated, some of them have started self-help programs. In Toronto, Melinda Cuthbert, clinic co-ordinator with the Birth Control and V.D. Infor-
mation Centre, has formed Canada’s first chapter of HELP, a Californiabased service for herpes sufferers. (Its newsletter, The Helper, has 15,000 subscribers, including 600 in Canada.) Cuthbert started the 70-member group last October because so many people were asking for herpes information when none was easily available. “For most it was the first time they had ever talked openly about herpes,” says Cuthbert. “Discussion revolved around questions like, ‘What was it like to tell your sexual partner you have herpes?’ There’s so much misinformation
around.” While the information situation was improved last month with the publication of The Herpes Book by Dr. Richard Hamilton (J. P. Tarcher, $12.95), Cuthbert says she could easily start up another 10 groups right now in Toronto alone—if government funding were forthcoming.
A common experience among Cuthbert’s group members and other herpes victims is an original misdiagnosis by doctors. Recent surveys by Ontario’s VD control officer, Dr. Ralph Persad, have shown that many physicians are surprisingly ignorant of venereal disease symptoms. “It’s quite common to misdiagnose herpes as a simple yeast infection,” he says. “I looked at forms filled out by physicians reporting VD and discovered that 30 per cent had prescribed inadequate treatments.”
For women, particularly, coming to terms with herpes is a real struggle, both because it tends to be more painful for them and because of the suspected link with cervical cancer. Counsels Dr.
Barbara Romanowski, the director of Social Hygiene Services for Alberta: “Any woman with herpes should have a Pap smear every six months. If cervical cancer is picked up early enough, the treatment is much more likely to be successful. And if she’s pregnant, she should advise her obstetrician she has herpes. If she’s in danger of infecting her child, she should have a cesarean section.” For men, the general advice is to wear a condom. That cuts down on the risk of infecting others. And, as for a cure, Sacks is optimistic one will be found within the next two or three years.
But that’s dubious comfort to one 38year-old journalist who has had herpes for 15 years and seen potential cures come and go as erratically as the disease itself. “Initially,” he recalls, “I was diagnosed as having syphilis. Back then I was relieved when it turned out that I didn’t. But looking back, I wish I had. At least syphilis is curable. ;£?
The story you want is part of the Maclean’s Archives. To access it, log in here or sign up for your free 30-day trial.
Experience anything and everything Maclean's has ever published — over 3,500 issues and 150,000 articles, images and advertisements — since 1905. Browse on your own, or explore our curated collections and timely recommendations.WATCH THIS VIDEO for highlights of everything the Maclean's Archives has to offer.