March 2004

The Price of HIV Infection

by Bruce Garner

Though I’ve been living with HIV for nearly 22 years, to look at me one would have no idea that I was infected. It doesn’t “show” at all. I’m quite healthy, no infections, no illness, leading pretty much a “normal” life. But it’s a normalcy that comes with a price—one that has lots of add-ons.

There’s the base price of just living with HIV: not knowing for how long, or how much longer … not knowing where and when an opportunistic infection might attack … just plain not knowing.

There’s the added price of the stigma. Some people won’t date people infected with HIV. Others don’t even want to be around them. This is true even after more than two decades of HIV in the world.

Then there’s the price of being a survivor. That brings a degree of guilt: Why am I still here when so many others have died? The other side of the price of surviving is losing those dear to you who did not survive. Recurring grief, then, is part of the price of living with HIV.

Part of the gross price is the attention HIV demands. The daily regimen of medicine is part of it: I have to remember which three HIV medications to take in the morning; remember which ones I can take with food, which I have to take with food, and which I must never take with food; remember to take another round of medications at bedtime, each with its own demands. What’s the added cost of not remembering? What if I take something twice?

Side effects exact a price as well. Is what I’m feeling because of the meds? Why does my stomach hurt? Why doesn’t food taste right? And then I end up taking another five medications every day to counteract the side effects of the HIV meds. What’s the impact on my body of all this? How long will any of it last? If these stop working, what would replace them? Some of the drugs I once took I can no longer take. What happens when there aren’t any left that I can take?

And of course there’s an actual monetary cost of living with HIV. The medications I take cost $3,538.87 for a three-month supply. That’s over $14,000 a year for the basic medications. It doesn’t include the other drugs I have to take to supplement them or counteract their effects. If I didn’t have excellent insurance coverage, where would I be?

Visits to the doctor every four months average over $1,000 each—the cost of the lab work alone is astronomical. But I have to have that lab work done so the doctor will know if the medications are still working or if we need to make a change.

The marvels of medical science make living with HIV easier these days, but look at the price. Wouldn’t it be a lot cheaper to have never gotten infected? That wasn’t an option when I became infected—we didn’t know what was out there—but it’s an option now.

What’s your excuse for not taking that option? You know what’s out there. Is unprotected sex worth the potential cost? For you? For someone you love?

Is it worth the price of a condom? It’s still worth the price of a condom for me to make sure I don’t get any further infection, or give it.

Wish the only price I had to pay was just for that condom…

Bruce Garner was formerly co-chair and a long-time board member of NEAC.