Living with HIV, Dying in Denial

Despite the broad availability of HIV treatment in Canada, stigma, shame, and denial remain barriers to proper treatment and care, physicians and advocates say. People who know they have HIV and still do not seek treatment increase their risk of transmitting the virus as well as dying prematurely.

“They don’t want to look themselves in the mirror and say ‘I’m HIV-positive,’” said Dr. Anne Stewart, a family doctor and medical director of Casey House, an HIV/AIDS palliative care hospital in Toronto. “So they don’t test, don’t get treatment, avoid dealing, and they’ll come to you 10 years into their disease with complications of AIDS which, in this day and age, is a travesty.”

It is not known how many who test HIV-positive do not seek treatment. However, a 2011 Ontario study found one in 10 men and one in 14 women had not sought viral-load testing within a year of their new diagnosis. Earlier this month, a US study found one in four people with HIV do not stay in care.

“I was in a great state of hiding,” Todd Glanville said of his HIV diagnosis 28 years ago and progression to AIDS. “Shame and guilt run rampant around the whole issue,” he said, sitting in a quiet room in Casey House. “It is such a traumatic diagnosis that people can’t and don’t and won’t face it. It’s easier at the time to ignore it and pretend it’s not there.”

To help patients stay in care, recently published recommendations by international experts suggest assigning newly diagnosed patients a “navigator” to guide them through the health care system, as well as a nurse or case manager for follow-up; providing one-on-one counseling; and using automated devices to alert doctors when patients drop out of care for six months or longer.

The Friends of AIDS Foundation is dedicated to enhancing the quality of life for HIV positive individuals and empowering people to make healthy choices to prevent the spread of the HIV virus. To learn more about The Friends of AIDS Foundation, please visit: http://www.friendsofaids.org.

TOGETHER WE REMAIN STRONG!