POSITIVELY AWARE JANUARY/FEBRUARY 2011
I tested positive in September of 1989 and I was devastated. There I was at the tender, young age of 30, at my virtual peak, and I had lost more friends to AIDS than I cared to count or could even recall. I wasn’t sure how much time I had left on this earth myself. It was a scary time—and this was still seven years before the era of protease inhibitors and the advent of HAART, so I had a right to be scared. We all did.
But then things slowly started to change. The drugs that were being developed and brought to market began to be more effective than their predecessors at reducing viral load and restoring the immune system, albeit still with some pretty nasty side effects. Diarrhea, kidney stones, anemia—you name it, it wasn’t pretty.
Since then we’ve come a long way in the treatment of HIV and AIDS. We’ve been able to get down to as few as one or two pills, once or twice a day, with great results and fewer and fewer side effects. If diagnosed and treated early enough, many people can expect to live for years, even decades, with what some are now referring to as a lifelong chronic, manageable condition.
However, there are still many complications associated with HIV and AIDS, as well as long-term side effects of HIV treatment, including diseases and complications of the liver, bones, kidneys, and heart, and brain impairment or dementia. People with HIV are also more prone to certain cancers, including Kaposi’s sarcoma, lymphoma, and cervical cancer. In addition, aging and metabolic issues, including lipodystrophy (body fat redistribution) and diabetes can affect not only your physical but your mental health as well.
I was only in my forties when I had to begin taking medication to lower my cholesterol and keep my blood pressure under control. Friends of mine who were the same age—and even younger—had to have their hips replaced and already had heart surgery—twice. The fat is being sucked right out of our cheeks and pumped into our bellies. I feel like the six-million dollar man desperately in need of a bailout, and that’s on a good day. Just call me Frankenpoz the rest of the time.
HIV is definitely complicated.
This is not to scare anyone from seeking help. As studies have shown, the earlier we get tested, into care, and onto treatment, the better for everyone in the long run. Improved survival, better response to the drugs, reduction in community viral load—hey, what’s not to like? Let’s face it, the ARV drugs available today are much better now than they were 15, 10, even 5 years ago. And more are in the pipeline and coming soon.
But it’s still no walk in the park. The longer we live, the more things can go wrong with us. Makes sense, I guess. Having complications which may be a result of the medications themselves can also adversely affect adherence, which can ultimately lead to resistance, so it’s important to be able to minimize these side effects whenever possible. Talk to your doctor, watch your diet, exercise regularly, and make sure you get enough rest. And not to get too preachy, but remember that the number one health hazard to people with HIV is smoking, so if possible, try to cut down, or even better yet—quit altogether!
I hear many docs who are saying that the drugs we have now are working just fine, so why change anything? As the saying goes, if it ain’t broke, don’t fix it. But now is not the time to rest on our AZT-wasted laurels, especially when it comes to HIV. Otherwise, in a few years we’ll find ourselves right back where we started, with no effective treatments available and none in the foreseeable future. Some of us who’ve developed multi-drug resistance have unfortunately already reached that point.
That is why it’s more important than ever that we continue to invest in drug development that explores novel targets and once-weekly or monthly dosing, and increase funding into viral eradication and cure research, vaccine development, and HIV and aging. We also need to keep plugging away at pre-exposure prophylaxis—we’re definitely on a roll, and we need to keep the momentum going. The more we do to chip away at the current state of affairs that we find ourselves in, the less scary and complicated it becomes—for all of us.
Take care of yourself, and each other.