Making it count

Having turned her life around, Louise, a recovering addict who is living with HIV, gives hope to others in a remarkable way.

Nearly five years ago, Louise was in the darkest of places.  A drug addict with many nights spent homeless, she could see no way out. She didn’t know when she would eat next, when she would get her next fix. The opiates and crack cocaine were dictating every minute of every day. 

But the worst was yet to come. Louise discovered she was pregnant and HIV positive.

“I thought it was a death sentence,” she says of the diagnosis. In shock and denial, she continued to use drugs until a visit to a doctor convinced her she had to turn things around for her unborn child. And she did, on her own, with grit, determination and the loving support of her husband and family. 

“I learned that the HIV could be managed but I had to be clean. It was a struggle. I was fortunate to be pregnant because my son was my motivation. He saved my life. I call him my angel.”

Clean for more than four years and HIV symptom-free, Louise, 32, is now giving hope to others in a unique way. She is both a participant in a landmark HIV research study and a peer interviewer for another study. In both roles, Louise is providing invaluable information on the experiences of people with HIV that researchers across the province and country are using to improve care and the quality of life of those living with the virus.  

“I always knew that if I got through it, I wanted to give back. I wanted to do something for others. When I’m interviewing a woman, I see her shoulders relax when I tell them that I too am HIV positive. They know they can be themselves. They know they are safe to share and that I will understand. It’s very satisfying.”

For the past four years, Louise has been participating in the Ontario HIV Treatment Network Cohort Study (OCS), a multi-site research study that collects anonymous clinical and sociobehavioural information on a cohort of participants living with HIV over time. The Infectious Diseases Care Program at St. Joseph’s Hospital in London is among the participating sites. The purpose of the OSC is to collect information on the clinical and health profiles of people living with HIV in care in Ontario to provide a robust information resource for clinical, socio-behavioural, population health, and health services research. 

Established in the mid-1990s, the OCS grew out of the demands of AIDS activists for research that would improve the quality of life of people living with HIV while respecting their privacy. Overall, the goal is to improve treatment, care, support and understanding of HIV for people living with it. More than 5,600 individuals are taking part. 

While participating annually at St. Joseph’s in the OCS, Louise came to know research nurse Michele Ellis, who felt she would be an ideal peer interviewer for another study – the Canadian HIV Women’s Sexual & Reproductive Health Cohort Study (CHIWOS). This national study seeks to understand whether and how women-centred care may improve health outcomes for women living with HIV in Canada. Participants in the study are interviewed by “peer research associates” who are women living with HIV and integral members of the research team. Louise is among them.

“Louise is an inspiration to those of us who provide care as well as patients,” says Michele. “She is proof that it’s possible to turn your life around. It’s so uplifting to see the changes she has made and the wonderful mother she is. She’s a bright light and a true beacon of hope for all of us.”

For Louise, the work is gratifying.  “Many of these women have never had a chance to talk to another HIV positive woman about their struggles, the ups and downs, what they go through on a daily basis. It’s therapeutic for them and for me.”

The job is so fulfilling, Louise is applying for similar roles with other studies. 

“I would feel that  my life – all the darkness, my diagnosis – would have been a complete waste if I couldn’t turn it around and do something positive. I’m happy to be able to do something worthwhile

Infectious Diseases Care Program

St. Joseph’s Health Care London has been treating people with HIV/AIDS since the disease appeared in the mid-1980s. In 1990, the hospital established a stand-alone clinic on Oxford Street, which became the first comprehensive program in Southwestern Ontario. In 2012, the Infectious Diseases Care Program moved back into the hospital and is now located in the central outpatient area in Zone B, Level 3. 

The Infectious Diseases Care Program meets the outpatient needs of HIV-infected and affected populations across the region, providing medical/ psychiatric, nursing, social work, pharmacy, and nutrition services. The focus is on both medical as well as psycho-social aspects of HIV/AIDS.  In total, about 500 patients are currently being treated at St. Joseph's for HIV/AIDS, from infants to patients in their 80s. The program also provides care for patients with a broad range of other acute and chronic infectious diseases.

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