Tell me a summary of your story of living with HIV.
I was diagnosed with HIV in 1997 when I was around 36 years old. My viral load was very high at 976,000 copies/mL, and my CD4 count was just above 200 cell/mm^3, indicating that I was progressing towards death.
Within one month of starting medication, my viral load went down to levels where the CDC considers HIV to be virally suppressed – what we now know to be U=U, or U+ undetectable. My CD4 count then doubled and later tripled, meaning I got onto medical treatment just in time.
I have some ideas about how I contracted the virus, either in 1987, 1990 or some period before 1997. I was actually first tested in 1990 – but I never went back for the results. I figure I was living with the virus for 7-10 years without realizing it.
There was a time I tried to donate plasma, well before I knew I was living with HIV. They denied my plasma but never explained WHY I had been denied. Looking back, it really makes me angry that the system wasn’t more transparent with me. They not only stigmatized me, they failed to educate me and give me further options to care for my health. Knowing what I know today as an HIV advocate, I would have asked why I was denied – so I could get proper follow-up confirmation testing and treatment.
It’s like having diabetes or this and that. It’s manageable, and it’s controllable. It’s not curable. Not right now, but it’s manageable. And I’ve managed this without medication and medication for 26 years,
I have been sober for 15 years now and living with HIV made me realize I needed to love myself more. I have been undetectable for around 18 years, showing that HIV is a manageable condition with the right care and medication.
In summary, I say “Bring It On!” I can face anything.
What would it mean to you if we ended this HIV epidemic?
I hope it will end one day but to be honest, me being 63, I don’t think it’s going to end in my time. And even it does, without a cure, there’s a lot of people that are going to need to keep taking medication.
I think one day, there’s going to be a cure. I’m sure there’s one out there but it would be very costly to develop and who would get it first?
If the epidemic was ended, people could get on with living a normal healthy life. Sadly, at some point, the pharmaceutical companies would go out of business because there would be no need for medication. That probably scares some of them. There is big money in keeping us sick.
What does U=U mean to you? How has it impacted your life?
Living with HIV for the past 26 years or more has been challenging at times but also a blessing in disguise. It motivated me to take better care of myself and seek support from organizations like the Damien Center. They have helped me with housing, bus tickets, food and other resources. My life has improved so much because of the support I have received.
How many years U=U?