Patients living with HIV are dying in denial
For four years Shari Margolese has been in phone contact with a woman who lives somewhere in rural Ontario. Margolese doesn’t know anything about her except that she is HIV-positive.
Terrified by her status, the woman has refused to seek proper treatment for her disease.
They talked about disclosure in their first phone conversation, said Margolese, a Toronto community consultant and HIV researcher at Women’s College Hospital. The woman was given Margolese’s number from a support worker trying to persuade her to seek help.
“She said, ‘I can’t tell anyone. I can’t tell my son because I’m afraid he won’t let me see my grandchildren. I can’t tell people at work because I’m afraid I’ll lose my job and I’m close to getting my pension.’ ”
The woman wouldn’t go to an HIV clinic. She saw her doctor after hours, telephoned AIDS service organizations but never went to one. And any information related to her illness she had delivered to a post-office box.
In a country such as Canada, with decades of readily available treatment for HIV and clinics and programs devoted to the disease, the stigma and shame associated with the virus continues to be a barrier, HIV experts say.
HIV advocates and physicians say they still encounter people with the disease who don’t seek treatment, increasing their risk of death and spread of the disease. By the time they go to hospital, they have deeply compromised immune systems, and sometimes full-blown AIDS.
“They don’t want to look themselves in the mirror and say ‘I’m HIV positive,’ ” says Dr. Anne Stewart, a family physician and medical director at Casey House, a palliative care hospital in Toronto for people living with HIV or AIDS.
“So they don’t test, don’t get treatment, avoid dealing and they’ll come to you 10 years into their disease with the complication of AIDS which, in this day and age, is a travesty.”
An estimated 65,000 people in Canada (26,630 in Ontario) were living with HIV in 2008, the most recent figures available through the Public Health Agency of Canada. It is also estimated that nearly 17,000 of those people are unaware of their status.
What isn’t known is how many of those individuals who test positive for HIV do not seek treatment, although an Ontario study last year found one in 10 men and one in 14 women had not gone for viral-load testing a year after being newly diagnosed.
The test, which measures the amount of HIV in one’s blood, should be done every three to four months to determine the need for anti-retroviral drugs.
Earlier this month, an American study found one in four people with HIV do not stay in care, the first comprehensive nation-wide look at patients and their willingness to seek treatment over time.
“Our findings show too many patients are falling through the cracks,” said lead author Baligh Yehia, a fellow at the Perelman School of Medicine at the University of Pennsylvania.
The research, published online in AIDS, suggests the findings will help doctors assess why patients avoid treatment and devise strategies to ensure people seek care.
Todd Glanville, 47, was diagnosed with HIV 28 years ago, at the height of the AIDS crisis. He says he initially avoided acknowledging or treating the disease.
“I was living in a great state of hiding,” he said. Glanville was working at a factory at the time and was in the middle of establishing a union. When he was diagnosed he went on sick leave and never returned.
Glanville, seated in a quiet room at Casey House, has lived with the disease and the side effects of treatments for most of his life. Being diagnosed with HIV was like a wrecking ball in his life, he says.
“Shame and guilt run rampant around the whole issue,” Glanville said, explaining why decades after its discovery people still continue to silently die with the disease. He has never had a moment of acceptance, he says, but has grown into it as an active voice in the HIV and gay communities.
He understands why people might avoid treatment for fear of exposure. “It is such a traumatic diagnosis that people can’t and don’t and won’t face it,” he said. “It’s easier at the time to ignore it and pretend it’s not there.”
Dr. Ahmed M. Bayoumi was lead author of the HIV chapter in the Ontario study, a government-funded report last year that also found one in five people diagnosed with HIV had not had a first viral-load test within three months of testing positive. The Ontario Power study findings, he said, point to a gap between initial diagnosis and accessing proper care.
Stigma, fear, mental health and addiction issues, lack of health-care coverage, and immigration status and the high cost of drugs - it can cost over $1,000 for a month’s supply of an anti-retroviral regimen - are the most common reasons given to explain this phenomenon.
Bayoumi, a research scientist at St. Michael’s Hospital, says because of the readily available treatment for HIV, there is a general perception that issues around HIV aren’t that prominent anymore.
“I think that really neglects the experience for a whole lot of people for whom saying that you’re HIV-positive would result in ostracism and discrimination within their own communities,” he said.
This month, leading AIDS experts at Johns Hopkins and around the world released new guidelines on how best to encourage HIV-positive people to seek treatment and stay in care. Among the strategies: assign a “navigator” or personal guide to help each newly diagnosed person through hospital and other services; assign a nurse or case manager to regularly follow up; use automated devices that alert a physician to lapses in care longer than six months; and provide one-on-one, instead of group counselling.
Margolese says there are initiatives like these in place in some parts of Canada, but funding for them remains a challenge.
Dr. Mona Loutfy, an HIV specialist and researcher at Women’s College Hospital, said she has a handful of patients who do not consistently seek care “and they’re dying.” Yet, the disease is completely manageable, she added.
“If someone comes in today, I can start them on one pill once a day and the average life expectancy is 40 years from diagnosis,” said Loutfy. People can live a normal life, she added.
Loutfy can’t say whether it is because of stigma, but adds there is certainly a component of denial.
She recently had a woman come in late and pregnant. Her CD4 count, a measure of immune system strength, was 30. (A healthy person’s CD4 cell count is between 500 and 1,500 cells per cubic millimetre of blood.) Loutfy couldn’t figure out why she had come in so late because the woman knew her husband was HIV-positive. She ended up very sick and was hospitalized.
Meanwhile, Margolese continues to wait for another call from the woman in rural Ontario.
She has spoken to her unknown client about five or six times. “And I still don’t know her name. I worry about her.”
Margolese has referred her to services she can access anonymously, like the Canadian AIDS Treatment Information Exchange (CATIE). But that is all she can do.
“It’s challenging because this is the population that’s not in care, so that means it’s difficult to reach them.”