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Op-ed: Brave New World

Op-ed: Brave New World


It was eight years ago, on October 13, 2003, that I was afraid I was going to die. I remember the phone call from my doctor telling me to come to his office to talk about my blood work. I remember sitting in his office and seeing his white coat sway with the breeze of the door closing. I remember him telling me, "Tom I'm really sorry to have to tell you, but your HIV test results came back positive." As long as I live I will never forget that moment.

Three years after my diagnosis and with the consultation of my infectious disease doctor, I began antiretroviral therapy. My first series of HIV medication was two pills, three times a day. But it didn't work for me, and my busy schedule prevented me from adhering to the routine of three times a day. I then switched to two pills once a day, at night before bedtime. This was much better; it was far more convenient when they combined these two medications into one pill. For me the side effects, including vivid dreams, insomnia, gastrointestinal issues, and being a bit sluggish in the morning, are just something I got used to, something I accept and hardly even think about now. I confess my experience is nothing compared to some, and we don't have a magic pill yet. Richard Powell, a 19-year-old contributor to the "Infected, Affected; Real Stories, Real People" series of journals on the Who's Positive website, at one time had literally bags of medication he couldn't use as a result of his body rejecting the various regimens that are available.

Some are challenged with the side effects or affording the cost of these lifesaving medications, but we need to think where would we be today without them. We are living much longer, fuller lives. And earlier this year a National Institutes of Health report showed that HIV-positive men and women who began antiretroviral therapy soon after becoming infected significantly reduced the transmission to their HIV-negative sex partners -- by a staggering 96%. Treatment as prevention? This is an enormous scientific discovery that will help reduce the transmission of HIV to noninfected partners. Until there is a cure, living longer and protecting the lives of our loved ones -- or those we hardly know -- is a winning proposition for everyone.

I don't want to think about life without these lifesaving medications; the world is literally a different place because of them. How many of the 33.3 million people with HIV worldwide would still be alive if we didn't have these medications? And who would share the struggles of those who have gone before us? I can't imagine a world without longtime survivor Dab Garner (of Dab the AIDS Bear Project) and all the stories of those we've lost and who had no access to these medications. I recall his stories of the early days of AIDS, when hospitals would not allow anyone in the rooms of folks who were HIV-positive. The very sick would die alone with no family or friends by their side. I can't imagine that loneliness.

I know I am lucky -- I am feeling great, and my viral load is undetectable. I just know that one day I am going to speak in front of a group and take the stories of Dab Garner as well as many others and talk about the time in the past when there was no treatment -- a time before we conquered HIV and AIDS.

TOM DONOHUE is the founding director of Who's Positive, a national organization that humanizes HIV through firsthand accounts of people living with the virus. He also sits on the board of trustees of the National Association of People With AIDS.

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