25 Years With HIV
I wasn't expecting to live beyond five years, so that's 20 years of borrowed time. Or is it?
It's not exactly borrowed time when the science behind modern medicine is this solid. It's come so far in such a short time. I think people have trouble keeping up with the current situation. Perhaps change has come so fast that some have trouble believing it.
Sadly, the horrific stigma that people living with HIV have to endure remains completely unchanged. It's as though no progress has been made at all. I've seen a lot of change, while some things never change.
When I was diagnosed, medicines had only recently improved to become the lifesaving drugs we know today. Antiretrovirals (ARTs) were developed in 1996, and they changed everything. But it took time for this new paradigm to really reach the medical community.
For several years, many primary care doctors didn't know how effective the new medication was. They didn't know it'd make the virus untransmittable. Many weren't knowledgeable about HIV or that new drugs even existed.
When I was diagnosed in June 2000, I was given a one- to five-year death sentence. I shouldn't have been. ARTs had been out for four years. But my doctor was uninformed. This was common among doctors for years.
Public knowledge of the disease has scarcely changed at all. To some degree I can understand. It took me many years to fully comprehend I wasn't going to die – at least not from AIDS. I lived in unnecessary terror, waiting to die, because education about HIV was scarce and almost taboo.
Most education systems don't teach about HIV. It's treated like a controlled substance. If HIV advocates and educators are allowed into schools to talk about HIV, they're severely restricted on what they can and can't teach. So the education is inadequate and incomplete. This perpetuation of ignorance causes stigma to exist. And stigma kills.
I lived with this disease for 15 years before I learned about U=U (undetectable equals untransmittable. That's when you take your meds as prescribed and reach an undetectable viral load (meaning that there's not enough virus in your blood to be counted). When you have an undetectable viral load, the virus becomes dormant and can't be transmitted.
This is incredible information for people who live with HIV. It's changed everything we once knew about HIV – from being a death sentence to being no more than a chronic condition. It also means people with HIV can safely have intimate relationships and sexual intercourse. They can even have children without risking the safety of their child.
Medical science that made this possible continues to evolve. An entire small cup of pills (called a cocktail) from the 1980s and '90s became a two-pill-a-day regimen. Then that became a one-pill-a-day routine. Without a cure, I thought one pill a day was as good as we could get. But today we have an injection that can last for months. Cure research has made incredible strides over the past few years. We're so close.
But public perception of HIV hasn't abated, despite all the progress. Our society remains fearful and ignorant about HIV. People who live with HIV still suffer from strong stigma that's not just hurtful or rude, it can also be fatal.
The last 25 years have been one hell of a journey. Times have changed. So have the meds. Now it's time for people to change, too.
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