Changing the face of the misunderstood

By Michael O’Morrow

Jack is in his early 30s.  He lives in Vancouver and is a working business professional.  He is gay and HIV positive. Jack learned of his status in March of 2008.  He says living with the disease has been both a blessing and a curse.

“It has forced me to have a new perspective on life, and to reevaluate what really matters,” he says.  “But telling people you are HIV positive is like coming out all over again.  You fear being labeled as different, and you fear being rejected by friends and family who love you.”

The British Columbia Centre for Disease Control reported that 62 per cent of new HIV and AIDS cases in Vancouver in 2008 were gay men.  Jack was surprised and worried by this number. “HIV infections were on the decrease for many years through the late 90s and early 2000s,” he says.  “So to see it back on the rise again is disappointing.”

AIDS Vancouver has come far since it’s humble beginnings in 1983.  The organization was initially formed in response to the growing HIV and AIDS pandemic by seven gay men living in the West End.  Today AIDS Vancouver employs over 20 fulltime staff, and is supported by 180 volunteers.

“We have a friendly rivalry with the AIDS Committee of Toronto,” says AIDS Vancouver Executive Director David Swan.  “We occasionally like to remind them we had our charitable number two weeks before they did.”

Swan has been Executive Director of AIDS Vancouver for a year and a half.  He has a strong devotion to fighting HIV and AIDS, as he has been living with the disease for 19 years.

“I have heard people today compare HIV and AIDS to diabetes,” says Swan.  “There is a belief today that if you get HIV you go on meds and you’ll be fine.  That is simply not the case.”

Swan attributes that misconception to the development of HAART (Highly Active Anti-Retroviral Therapies) and the press’ depiction of HIV and AIDS as a chronic manageable disease.

“It is true that we have seen people who were literally on their deathbeds become well again,” says Swan.  “But what the public doesn’t see is how the meds can have a long-term effect on a person’s life.  There are cases of individuals with heart disease and premature ageing as a direct side effect of the HIV medication.”

The rise of HIV and AIDS infections in the gay population is of concern to Swan.  But just as concerning is the rise in other populations he describes as vulnerable.

“HIV has a high infection rate among populations that have been historically marginalized and ostracized.  While having stabilized among injection drug users, rates are on the rise among gay men and the aboriginal community.”

According to Swan, these vulnerable populations are subject to poor decisions and behaviour that prolong the spread. “Populations like the aboriginal community and the gay community spend much of their young lives hearing that their way of life is bad and dirty.  As they become older, we often see individuals from these groups making poor decisions and engaging in questionable behaviour as a way of boosting their self-esteem and confidence, and to quiet the voices inside their head.”

Programs that involve case management, health care, housing, and financial and legal issues, support is AIDS Vancouver’s key focus.  The organization employs seven social workers to assist in emotional and psychological issues, and it operates a grocery program staffed by volunteers.

“We are not a gay organization.  AIDS Vancouver supports people living with HIV and AIDS regardless of gender, ethnicity, age or sexual orientation.  And we support those HIV negative individuals who want to become better aware.”

Awareness, stresses Swan, is the key to controlling the disease.  For infection rates to drop, attitudes, perceptions, and behaviours must change. “The information is available.  People know about HIV and AIDS.  Unfortunately people still engage in behaviour that puts them at great risk.  People have to be prepared to change their actions and protect themselves from harm.  Action is the best way to prevent HIV.”

Jack has been on HIV medication for a month.  He’s not sick – he’s entered into a discordant relationship (one HIV positive, the other HIV negative), and he’s gone on medication to protect his partner.

“It’s tough.  The irony is before going on the meds, I felt healthy.  I didn’t think about HIV, it had no effect on me physically or emotionally.  But starting the medication was a harsh reminder of what I live with, and physically it’s beaten me up.”

Jack describes harsh side effects from the medication like dizziness, nausea, head and body aches, and difficulty sleeping.

“It’s supposed to get easier,” he says.  “But for now it certainly isn’t fun.”

Like Swan, Jack believes that for HIV and AIDS to be controlled, attitudes and behaviours need to change.

“It’s not a lack of education – it’s a lack of responsibility.  People will do what they want to do.  And because of that we hear some very tragic stories.”

Jack hopes that he can serve as a model of success for those living with HIV.“I am very fortunate.  I have been accepted into a relationship by a man without HIV, and I have his love and support in dealing with the disease.  I have been accepted by my friends, and I have received great support when needed.”

And to those who are struggling?

“Remember to have courage and strength, and to ask for help.”

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