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Living With HIV: The Price

May/June 2003

A note from TheBody.com: Since this article was written, the HIV pandemic has changed, as has our understanding of HIV/AIDS and its treatment. As a result, parts of this article may be outdated. Please keep this in mind, and be sure to visit other parts of our site for more recent information!

Many folks -- particularly young folks -- think that HIV/AIDS has become a manageable condition. Many think that they don't really need to worry about getting infected with HIV. If they do get infected, they just start taking pills and everything will be fine. I doubt that those with this mindset really understand the true price of living with HIV.

I have been living with HIV for nearly 21 years. I was infected in 1982. To look at me one would have no idea that I was infected with HIV. It doesn't "show" at all. There is nothing obviously physical that would give it away.

I am alive and quite healthy, no infections, no illness, pretty much a "normal" life. But it's a normalcy that comes with a price, and that price presents itself in many forms.

There's the price of just living with HIV, not knowing for how long or how much longer, not knowing whether I will be stricken with an opportunistic infection ... just plain not knowing. (Although many can rightly claim that none of us knows our fate.)

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There's the price of stigma. Some will not date people who are infected with HIV. Others don't want to be around people with HIV -- true even after more than two decades of HIV in the world.

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. So grief also becomes part of the price of living with HIV.

There's the price of living with the regimen of medications I have to follow each day. Remembering to take three HIV medications in the morning ... remembering which ones I can take with food, which I must take with food, which I can't take with food. Remembering to take another round of medications at bedtime. Again, which with food, which without, which can, which can't. Just remembering carries a price. What if I don't remember? What if I take something twice?

There's the price of the side effects of the medications. Is what I am 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 of this? How long will any of it last? If these stop working, what is available to 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?

Finally, there's the monetary cost of living with HIV. The three HIV medications I take cost $3,538.87 for a three-month supply of each. That's $14,155.48 a year just for the three HIV medications. That doesn't include the other drugs to supplement or counteract the effects of those medications. If I didn't have excellent insurance coverage, where would I be? Who would pay the price for those medications? My visits to the doctor every four months average over $1,000.00 each. The cost of lab work alone is astronomical. But I have to have that lab work done for the doctor to know if the medications are still working or if we need to make a change.

Sure, 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 really an option when I became infected ... we didn't even know what was out there.

You know what's out there. What's your excuse? Is it going to be worth the price for you? Is it worth the price 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 from HIV or give HIV to someone else. I wish the only price I had to pay was just for that condom.

Bruce Garner is a member of ATI's Board of Directors.

A note from TheBody.com: Since this article was written, the HIV pandemic has changed, as has our understanding of HIV/AIDS and its treatment. As a result, parts of this article may be outdated. Please keep this in mind, and be sure to visit other parts of our site for more recent information!



  
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This article was provided by AIDS Survival Project. It is a part of the publication Survival News.
 
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