The Positive Side

Winter 2015 

Chatty CATIE: The Road to Undetectable

Interviews by RonniLyn Pustil

DAVID H., 49

Southern Alberta
HIV+ since: 1984
CD4 count: 224
Undetectable for: 8 years

By 2006, I had become resistant to all the HIV meds out at the time. I was supposed to die, but thankfully new drugs soon became available. I’ve been on my drug regimen for eight years now—and my viral load has been undetectable for nearly as long.

Being undetectable with a CD4 count of 224 makes for a bumpy ride. I try to hang on and not let it get to me. I am fortunate enough to not have to deal with financial issues because just existing is a battle onto itself.

Being undetectable reassures me that I am less likely to transmit the virus to others. This helps me to stigmatize myself less. It is tiresome to see on all the dating sites the words “must be clean and disease-free.” The connotation of the word clean negates the fact that I am undetectable and it’s insulting to anybody living with HIV. Education is a slow-moving rock where I live. It gets crushed by fear and a lack of understanding.

Being undetectable in Southern Alberta is not the same as being undetectable in, say, Toronto, where there is much more awareness. Going to a larger city often boosts my morale and confidence immensely.

I live in a town with a population of 100,000 where “treatment as prevention” [the idea that HIV treatment and having an undetectable viral load dramatically reduces the risk of HIV transmission] means nothing to many people. This is the Bible Belt. Most people here still seem to think that HIV is a death sentence, and second-year nursing students still believe they can get HIV from a handshake.

Being undetectable makes me feel like I am doing my job. I take my drugs on time every day. I feel proud when my HIV doctor asks if I’ve missed any doses and I can say no. My healthcare providers have given me the tools to do this. But being undetectable is not enough. In return I give back to my community with many hours of charity work. It all comes full circle.

MURRAY HODGE, 56

Toronto
HIV+ since: 1995
CD4 count: 630
Undetectable for: 9 years

Prior to viral load testing, the main tool to monitor your health was your CD4 count. Once viral load testing came into the picture, it was all about striving to be “undetectable” and reducing the amount of HIV in your blood to levels so low that a viral load test would not be able to detect it.

I feel good when I get that undetectable result every three months. It’s always the first thing I ask my doctor about. It means that I don’t have to change my treatment and that everything is fine until the next time I get my viral load checked. It’s encouraging, a positive affirmation that I’m doing well. I have multiple drug resistance, so not having to change my regimen is a great relief.

I’ve had a few blips over the years but when we’ve done a follow-up I’ve been undetectable again every time. When there’s a blip, I get concerned but I don’t worry that we won’t be able to manage it. I feel like everything is easier to manage now when it comes to my HIV. My focus now is on living longer and growing older with HIV and all of the issues that come along with that.

TRACEY NOLAN, 44

Stephenville, Newfoundland
HIV+ since: 1997
CD4 count: 464
Undetectable for: just over a year

I was diagnosed on September 13, 1997, a little over a week after having a miscarriage. I had an HIV test because in Newfoundland all pregnant mothers were routinely tested. I started treatment a month later—ritonavir and saquinavir, just those two meds for 10 years. The doctor at the time gave me a grim outlook but the HIV nurse assured me I would be OK.

My latest CD4 count was pretty good considering I went off meds for five months almost a year ago due to financial struggles (copayment being almost as much as my paycheque). It was a scary visit with the HIV clinic team when I was told that my CD4 count was 163 and my viral load was very high. My son was with me in the doctor’s office and when he started to cry, it set off the flood of tears I was trying desperately not to release. For the first time in 16 years, I came face to face with my mortality and thought, “This is it. I am going to die.”

There was a dark cloud but once my viral load went back to undetectable soon after I went back on HIV meds, the sun came out and I could breathe again. It’s a great relief that I am not resistant. Before I went off meds, I had been undetectable for 13 years.

Being undetectable gives me hope for more options in the future. It means keeping opportunistic infections at bay. It lets me focus on things other than the fact that I’m a host to HIV.

I try to remain positive even when I’m scared. When I’m feeling ungrounded, I smudge, which gives me a sense of balance. There are so many who have passed on with this illness that I feel I must maintain a sense of gratitude for being able to celebrate life every day, even the shitty ones.

GORDON, 65

Vancouver
HIV+ since: 1989
CD4 count: 550
Undetectable for: 5 years

I have been surviving and sometimes thriving with HIV for 25 years. I have seen friends and lovers die. In the early years, there was a lot of mistrust of the pharma industry, as it promised us treatments that did not deliver or that left us struggling with nasty side effects.

Today the meds seem to be so much better and I have been doing very well on Atripla for the last five years. Although my viral load is undetectable, in the back of my mind I wonder if the wheels will eventually come off again. For many years I was told to think positively but to be prepared for the worst. It is hard to totally let go of the past and change that mind­set overnight.

I feel like I am in the process of coming out again—a little hesitant, reluctant and nervous—as an undetectable HIV-positive man. According to many studies, people who are undetectable may live normal lifespans and are far less infectious. I still practice safe sex just in case. It’s like I’m in a transition phase and am gradually gaining more confidence and self-respect. I feel that being undetectable is something to be proud of. When I step back I realize that we are leading the way to reduce HIV in our community.

We need to rebrand. The words HIV and AIDS are loaded with 30-plus years of fear, shame and stigma. I want to let go of all that. How about Undetectable and Proud! I look forward to a future when we can all come out and celebrate. 

For more on what it means to be undetectable, check out AIDS Vancouver Island's “The New Face of HIV” campaign at aidsvancouver.org/undetectable