Life with HIV

HIV treatment has improved tremendously over the last 30 years, and life expectancy has increased significantly.

Life expectancy increased by around 10 years in 20-year old male patients who started taking antiretroviral treatment between 1996 and 2010s, states a study published in The Lancet on May 10, 2017.

Christine D. (who requested her name be withheld), is a transgender woman in her 60s who has been HIV positive for over 30 years. She said since receiving the diagnosis on Sept. 6 1986 at 9:10 a.m., she has gone from taking 23 pills a day to only two.

“My goal is to go down to one pill a day. Which would be great,” Christine said.

Christine said that her regimen has changed significantly. She was initially on a three times-a-day medication cycle and would sometimes miss her midday dosage. She now only takes the two pills in the evening.

“In those days, everybody carried beepers. You’re in the room with 40 people for a conference or a get-together and by 3 o’clock, everybody’s beeper goes off at the same time.”

When she was diagnosed, Christine said that the only treatment available in Canada was azidothymidine, or AZT. As a resident of Toronto, Christine’s only option was to go to the Wellesley Hospital at 1 o’clock on Wednesdays to get the drug.  

“A nurse would come out and she’d yell ‘All those here for your HIV medication, please line up on that wall.’ So everyone would look to see who they had slept with last night,” Christine laughs.

The United States approved new treatments a year and a half to two years earlier than Canada, Christine explained. This meant that Canadians had to wait before they could receive any form of improved medication.

AZT was initially designed as a chemotherapy drug, according to Christine, but it was highly toxic. Side effects included nausea, headaches, diarrhea, vomiting, and lypodistrophy, a change in the body’s fat storage resulting in a sinking appearance of the face.

With modern antiretroviral therapy, or ART, there are similar side effects, but many are much less common, such as lypodistrophy, according to the ART training manual on i-Base, a United Kingdom-based treatment activist group.

Christine has been a staple of Toronto’s LGBTQ community for many years, and has been involved in raising awareness about people with HIV. She also participates in medical practicums where students are required to give an HIV positive patient the very difficult diagnosis and learn to do rapid tests.

The students are not aware that all the participants are well aware that they are HIV positive and students get a real-world experience of delivering the diagnosis. The first time Christine participated, one of the young students was so mortified of having to give the diagnosis she was shaking with the paper in hand.

“She put it down on the table, and she flipped it across the table” Christine laughs, mimicking the motion.

However, the one thing she wants all medical students to remember is that weekends are sacred.

“If you need to call someone, don’t call them on a Friday night at 5 o’clock and leave them a message, because you can’t do anything about it until Monday,” Christine says.

Christine even managed to get a form changed at the People With AIDS Foundation to add “Identifies as:” in the gender field on a form. She said that she did not feel included in the “male” or “female” sections and that she would not sign a consent form until she was included. That night a manager called her and asked what they should change.

“The next time I went, the form was changed,” Christine concluded.