Saved in the nick of time!
Content note: this story contains some references to suicide
I was tested rather late circa 1991. I had been in a monogamous relationship since August of 1980 and remained in good health. A friend in a similar situation was tested as an employment requirement and the result was positive. This sent everyone I knew to a testing site. My partner was negative and I was positive.
After a month of wrenching turmoil, I went on with my life. I was healthy and there was nothing I could do. Fed up with traffic congestion and crowding my partner and I left good lives in Berkeley, California—shocking all of our friends and family—to relocate in Santa Fe, New Mexico, the historic state capitol and a robust art and cultural capitol.
Set dramatically at the southern end of the Rocky Mountains in the high desert at 2500m overlooking the Rio Grande Valley, Santa Fe is tucked into the border of millions of acres of national forest, with a lovely climate of 330 sunny days per year.
Finding a new life in Santa Fe
Employment opportunities were limited. The State government was a large employer but jobs were rare for people outside of the Hispanic community like us, although I spoke fluent Spanish. The other choices were to live off a trust fund (which we did not have) or create a business. Santa Fe is well-endowed with travellers. Without any prior interest, we decided to build a small hotel. I was trained as an architect, so I set out to design our little Inn. And my partner was an award-winning baker, so he was in charge of food and organization.
The first season we were open we benefitted from an overflow of referrals from other properties. At the beginning of our second season, Santa Fe was selected by a panel of international travel writers as the number one travel destination in the world, besting perennial favourites, Paris, San Francisco and Vancouver.
Little did I know that this move would literally save my life.
The progression of my diagnosis
Not long after we set up, a well-regarded local family physician sold his private practice and opened a small HIV clinic. I was an early client and volunteered part-time answering phones and greeting clients. I never developed any of the defining opportunistic infections associated with HIV, but I eventually reached an AIDS diagnosis when my T cells slipped below 200.
Over two years without any dramatic health challenges, I eventually started to lose both weight and energy, and spent the first six months of 1995 weak and in bed. There was no treatment at that time. I slipped down towards an imminent death when out of the blue in August 1995, a 1400 person clinical trial for the medication Crixivan was announced, which seemed to stop the virus in the laboratory.
In the nick of time
I was one of the nearly 40,000 applicants selected and I was extremely fortunate to have received the only spot in New Mexico. At our small clinic, the paperwork was completed quickly and I received my first dose the day it became available November 1, 1995. At that point I was extremely weak and had only a handful of remaining T cells and a viral load in excess of 1 million copies. I was within days of dying.
At the time we thought the medication reached efficacy after a month. I subsequently learned it actually beat up the virus after my first dose! If we had remained in Berkeley, CA, the clinic where I would have received treatment had a very large client load. Even if I had received a place in the trial, the paperwork would have most likely been delayed and I would have died before the first dose arrived. That was the fate of my friend whose unexpected positive test result inspired my testing. Although he, too, received a lucky place in the trial, the delay in completing the paperwork meant he did not receive his first dose until just after 1996, two months after me. A month later he sadly died.
Moving to Santa Fe, which placed me in a small clinic, saved my life! My wonderful doctor was both physician and friend. After four years of patients dying, I became the first to be saved, and the clinic mascot. I slowly regained my strength and returned to work. Subject to the previously unknown side effects of Crixivan, I was switched to Sustiva at the first availability.
Finding a treatment course that worked for me and starting again in BC
Six months later I fell into one of the previously unknown side effects of this second salvage therapy, a black hole suicidal depression. I unknowingly kept the deadly depression alive by taking my medication twice a day. Anti-depressants and talk therapy were ineffective and it was only due to my inability to kill myself in two suicide attempts that I survived. Eight months later, a pharmacological psychiatrist learned about the potential side effects around mental health challenges and took me off Sustiva. Life slowly returned to normal.
As abruptly as my ex-partner and I relocated to Santa Fe in 1991, I moved to Victoria, BC November 1, 2005. I first became a volunteer, then a Board member and the public face of HIV positivity at a regional ASO, formerly named AIDS Vancouver Island (AVI). Sadly when I began my volunteer career in 2007, HIV stigma was flourishing on Vancouver Island.
Fortunately my life was secure and I was so thrilled to have escaped certain death by the skin of my teeth. I spoke frequently and robustly at public events, and on TV, radio and in print media interviews. My dramatic story of survival at the imminence of certain death was of interest, and by speaking out, I aided the slow expulsion of HIV-related stigma in our health region. This was a great first "job" for a late in life immigrant and now proud citizen of Canada.
Taking my place as a proud advocate against HIV stigma
Over the years, I continued to play a role in volunteerism and advocacy. I have been able to bring the voices of people I met—across reception desks or walking down the street—to podiums that rarely welcome them. I currently serve on both the BC and National HIV Stigma Index Survey teams—a community-based research study gathering evidence on how stigma and discrimination impacts the lives of people living with HIV. I also serve as an HIV+ community representative on Island Health's STOP HIV/AIDS Advisory Steering Committee.
While my story clearly illuminates the life-saving advent of HIV medication, HIV stigma continues to significantly impair people’s mental and physical health, and social connection with others. This grim reality necessitates the next part of my journey: putting an end to HIV stigma and more equitably offering compassion to my fellow Canadians.
Earlier this year Andrew was awarded BC’s prestigious Medal of Good Citizenship, commemorating his years of outstanding service and commitment to helping others in his community.