On World AIDS Day, Let’s Focus on the Next Generation
I was exposed to HIV in the early ’80s, when it was called GRID (gay-related immune deficiency), and I’ve spent more than 30 years — over half my lifetime — defying the odds. Four of those years in the early- to mid-’90s were spent in and out of the hospital, battling one horrendous infection after another, but somehow I was able to hang on long enough for effective drug combinations to be developed. I remember those early years of losing friends, one after another, and wondering when it would be my turn. And I remember when my health miraculously returned like it was yesterday.
I’m always surprised when I realize that people who are now in their teens and early 20s were just being born around the time when effective antiretroviral drug combinations were developed, and most have no idea how the AIDS pandemic even started. To them it all happened a lifetime ago, and they have no way to relate to what it was like. For those of us who survived those pre-cocktail years, we were so AIDS-weary that we couldn’t wait to put the nightmare behind us. In the process we neglected to pass along our history to the next generation. Their future may depend on learning from our past.
It began with a handful of gay men experiencing some strange cancer that resulted in purplish lesions forming on their skin and internal organs, and others were coming down with a rare type of pneumonia. By the end of the first year, 121 people had died. Ten years later the CDC reported that 100,777 people had died in the U.S. from AIDS complications, and almost one third (31,196) of those deaths were reported during 1990 alone.
So how did this invisible killer-virus seem to come out of nowhere and take so many lives so quickly? For starters, it didn’t happen overnight. The virus had been making its slow and steady way into the bodies of tens of thousands of people long before anyone started showing symptoms of AIDS. Scientists soon discovered that the virus had an average incubation period of about 10 years, which meant that we had been passing it from one person to another for many years without even knowing it.
For millions of people around the world who were first exposed to HIV in the ’70s and early ’80s, it was already too late for them, and most did not survive. Education was practically nonexistent, funding was too little and research wasn’t far enough along to save their lives. It took scientists several years to identify HIV as the cause of AIDS, and a few more years to understand how the virus was transmitted. Then it took another year or two for a test to be developed that could detect the antibodies in our blood, and 15 years for effective drugs to be developed to slow replication of the virus. And we’re still waiting for that elusive vaccine. In the meantime, nearly 30 million people have died from AIDS.
In the 31 years since AIDS was first identified, there have been remarkable advances in life-saving antiretroviral therapies. HIV/AIDS is now considered by many to be a manageable disease like diabetes or high blood pressure. But is it really?
I’m one of the lucky ones, and my HIV is successfully being managed. But for every story like mine, there are many more people with HIV who aren’t so fortunate. I have an insurance policy that can cover the $16,000 a year in medications. I have access to top-notch AIDS specialists. I’m self-disciplined enough to take my meds day after day, year after year. And so far, I have the body stamina to handle all the highly toxic drugs I’ve had to ingest for decades — though my stomach begs to differ, and frequent nausea is a nagging little reminder that I’m not popping M&Ms.
But not everyone is doing as well. The CDC estimates that only 28 percent of people with HIV in the U.S. are successfully keeping their virus under control. They may not have insurance or access to proper care, or perhaps they began drug therapy too late. For some, it’s also possible that the virus has become resistant to all the available medications. Others might be experiencing drug fatigue and are skipping doses, or have stopped taking their meds altogether. Some may not be able to handle the side effects of the drugs. Many people don’t even know they’re HIV-positive and have a disease that needs to be managed. An alarming number of people think a vaccine already exists, and that if they get exposed to HIV, so what? They think it’s no big deal. The reasons for treatment failures are numerous, but one thing is for sure: HIV/AIDS is definitely not a manageable disease for a lot of people.
Of course, there is no vaccine to prevent infection at this time. I have faith that one day there will be, and on that glorious day when HIV/AIDS is eradicated, millions of lives will be spared. But when that day comes, does that mean that we’re out of the woods and can finally, at long last, go back to the way things were? Will we continue to protect ourselves and our partners through safer-sex practices, or are we doomed to repeat the same mistakes?
As we strive for an AIDS-free generation, I wonder if the lessons we learned from the AIDS pandemic will carry over. What happens if another virus is out there lurking in the shadows that we don’t even know about, and for the next 10 years it’s being passed from one unsuspecting partner to the next, until some young man or woman notices a strange purple lesion on their skin?
Philosopher George Santayana wrote, “Those who cannot remember the past are condemned to repeat it.” Let us not condemn the next generation because we remained silent. It’s time we bring the history of AIDS out from the shadows of our memories. Take World AIDS Day to honor the many lives we’ve lost. Talk to a young person about the history of HIV/AIDS, and share with them the lessons we learned. You never know, you just might save someone’s life.