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As we live longer with HIV, many of us are reaching a more mature age and wondering if the way we feel is what is considered "normal" for our age. By the year 2015, it is estimated that more than half of us around the world will be over 50 years of age, a good thing for most of us who never dreamed about living to see that age. But as an activist who has been attending HIV conferences since 1994, I have become hyperaware of my quality of life as I have passed the 50-year-old mark.
One side of me is extremely happy and grateful than I am still alive after 27 years of infection. Another part worries if I have accumulated so many toxicities or irreversible changes in my body that I will grow old with a lot of health issues and dependence on others.
As I watch my 76-year-old mother get up at 5:30 a.m. to walk around the neighborhood, then cook breakfast and start her busy day, I wonder what I will be like when I reach her age. The woman has a lot of energy and can remember small details about the past. She can cook, clean, run errands, do volunteer work and be on her feet most of the day. Just watching her makes me tired! I have told her many times that I would love to have half of her energy at my current age of 51, and that I doubt that I will be as healthy as her when I reach old age. She keeps bringing up memories from a not-so-distant past, memories that I have no recollection of and that make me feel that I am indeed losing my memory as I have survived HIV for 26 years.
My mother reminds me of the miracle that my life has been, and gives me hope for a miracle that the future may hold in proving me wrong once again.
In the same way I have handled my HIV infection, I believe that learning as much as we can while we're still capable of being proactive about things can make a huge difference in how we lead our lives as we wait for a cure for HIV. In my search to do things now that can prepare me for an old age that was never in my plans when I was first diagnosed, I am actively reading all studies that are presented on aging with HIV and working with my fellow activists to ensure that researchers look into potential health trends right now.
That research is still ongoing, but it has already taught us much. In 2004, we started to see studies that show that decreased bone density may become an issue for many long-term HIV survivors earlier than what is considered "normal" in the general population. But although bone fracture data seems to show an increase in this problem, many of us have not seen ourselves or our HIV-positive peers succumb to bone fractures.
Also, some studies show that anal cancer rates seem to be increasing in the HIV-positive population, which has made some of us rush to get our butts checked with anoscopies -- and to get unproven treatments in hopes that they will ensure we do not have surprises in that area. But unlike bone fractures, more and more of us know HIV-positive people who have had anal cancer or have died of it.
Memory problems are a complaint that is often minimized by others around us, though it comes up in HIV support groups both online and in person. But are we really having more than the expected memory loss as we age?
We are starting to see some data, but the evidence is not convincing yet. Some of us may be more tired than our healthy peers and wonder if the HIV medications themselves have caused some irreversible damage to our mitochondria, the energy factories of our cells.
These and several other emerging issues make me wonder if we are just seeing the "tip of the iceberg" when it comes to aging with HIV. At the same time, I dream that all of these problems are going to stabilize and not pop out their ugly heads until we are much older.
Many studies show that those who started HIV medications later, when their CD4 counts have dropped, may be more predisposed to bone and cognitive problems. So I ask myself if newly HIV-infected people, who are now starting treatment at higher CD4 cells and with newer, "friendlier" medicines, will ever have any of the health issues that we are discussing in the present.
As for those discussions: Fourteen years after the introduction of HAART, the time finally came for an international meeting to discuss issues related to getting older with HIV. The 1st International Workshop on HIV & Aging was held in Baltimore, Md., on Oct. 4 and 5. Around 180 researchers, community advocates, U.S. health department representatives and pharmaceutical employees were present to review issues that are starting to emerge in studies that follow long-term HIV survivors.
The conference covered data on frailty, cognitive function, bone loss, Vitamin D deficiency and supplementation, immune activation and senescense, medication interactions, mitochondrial dysfunction, inflammation and reasons for hospitalization of older people with HIV.