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The first diary I ever posted on this site, in 2006, was posted on, and in honor of, World AIDS Day. With one exception I've done one each year since then. WAD is personally important to me. I've been HIV-positive since the end of 1980, I've lost two partners and many friends to AIDS, and even now quite a few of my friends live with HIV.

Despite the the day's significance to me, I've been struggling to find a way to frame something this year. I do have some ideas to present, which I'll explain beyond the fold.

I tend to keep these things personal. Although I'm neither stupid nor intellectually incurious, I find things turn out better if I stick to topics I am both reasonably knowledgeable and reasonably passionate about. I also tend to steer clear of overtly partisan topics since I am a federal employee and have to pay attention to the Hatch Act (no doubt anyone with any sense can figure out who I really am and where I work).

My life has been deeply affected from HIV from the very earliest days of the epidemic. Since I became a member of this community, I've chosen to focus on the personal aspects of the disease in one way or another. My first World AIDS Day diary in 2006 was a relatively simple and straightforward accounting of some personal information. I skipped the following year for some reason; probably just couldn't think of a good approach, or else the day fell, as it does this year, on the weekend when I tend not to spend as much time on this site. In 2008 my approach was much the same, if a bit more nuanced. The following year I turned my attention to some of the people I'd lost over the years. That particular diary had a rather happy outcome; well after it had been posted, someone ran across it who was in touch with my very first boyfriend, who I'd been out of contact for well over 20 years at that point, and we were able to renew our friendship.

I took a slightly different, more confessional tack in 2010, chronicling how it was I became infected and what was going on at the same time. Two years ago I wrote about my late partner Mario, who passed away in 1992. And last year I touched on some of the more political aspects of the epidemic and its history.

So what to do as a follow-up? I'm thinking about getting old.

Initially, before people could be tested for HIV infection, the only way to know whether one had HIV was to come down with an AIDS-related opportunistic infection. At that point the statistics were grim; anyone who survived more than three years beyond initial diagnosis was considered quite a wonder. Things have changed a great deal since then. In the mid-1990's protease inhibitors seemed to be miracle drugs, bringing people back sometimes from severe illness and debilitation to virtually normal lives. Other classes of drugs available more recently have increased life expectancy even more. In fact, between 2000 and 2010, average life expectancy for someone living with HIV increased by 15 years. In fact, under some circumstances, people with HIV can expect to live a virtually normal lifespan. This is all predicated on a number of things, not the least of which is dependable access to medication and medical care, and some lifestyle changes (did you know that gay men are more likely than the overall population to be smokers and those living with HIV are even more likely than the average gay man? I'm lucky; I quit nicotine in 1977). And not also being infected with Hepatitis C; HIV/Hep C coinfection is an all too common situation, often though not always associated with a history of IV-drug use. In addition, it appears that bodies of people with HIV tend to age faster than those of the uninfected. Incidence of stroke and heart disease is markedly higher than normal. Again, good medical care and attention to general health definitely helps. For me this is a no-brainer. I see all of my numerous doctors regularly (and who knows when a new sort of specialist might be added to my support system?).

At this point, and assuming as well that I take after many of my relatives on my mom's side of the family, it's entirely possible that I will live well into my 80's and die of a massive heart attack when I'm quite elderly. Assuming diabetes, high blood pressure and Alzheimers don't get to me before then. I also, because I have inflammatory bowel disease, am more prone than normal to develop colon cancer. Colonoscopy after 50 you say? I was diagnosed with ulcerative colitis when I was 16 so I've been getting one of those things done every two or three years since I was 30. I still hate the preparation and I'm not especially fond of the procedure either. But it's what I do. If I'm not already dead from HIV, the least I can do is keep my body in good working order, no? There are many other ramifications to living with HIV--and taking HIV medications--long-term, not all of which are fully known. I try to keep on top of things, again because it's the least I can do.

I'm planning to retire at the end of 2014. Back in 1990 I was researching disability retirement, just in case. Now, it'll be time for the modern equivalent of a gold watch, in other words a fairly informal luncheon at the office, accompanied by many telephone calls to OPM to see what's up with my pension. And then of course like many people who retire I can begin to worry that I won't run out of money before I run out of life.

I don't mean to be glib about this but many of those concerns were distinct luxuries that I didn't bother myself overly much with even 20 years ago. This is all well and good of course but what about the bigger picture? Why even talk about these things?

Two groups of people concern me. The first group (because I am at least minimally concerned with myself) consists of the people I knew or might have come to know if they hadn't suffered an untimely death from HIV. At the very least those people deserve to be honored and their memories respected. The other and far larger group consists of those who are not as fortunate as I am. This would include the majority of people outside of North America and Western Europe; those living with HIV or at risk of contracting it who don't have access to medication and reliable medical care.

Allow me to throw some statistics at you, courtesy of AmFAR:

As of 2012,

*More than 35 million people now live with HIV/AIDS.
*3.3 million of them are under the age of 15.
*In 2012, an estimated 2.3 million people were newly infected with HIV.
*260,000 were under the age of 15.
*Every day nearly 6,300 people contract HIV—nearly 262 every hour.
*In 2012, 1.6 million people died from AIDS.
*210,000 of them were under the age of 15.
*Since the beginning of the epidemic, more than 75 million people have contracted HIV and nearly 36 million have died of HIV-related causes.

(Sorry that list isn't as pretty as it might be; my attempts to use HTML to create bullet points were not all that successful)

What we must understand as well is that 2/3 of those living with HIV live in Sub-Saharan Africa. Three-quarters of AIDS deaths in the world occurred in the same region. The fact that the proportion of deaths is higher than the proportion of those infected means that people do not get the care they need.

While things in the US are certainly far better, there are sub-populations even here that do nearly as badly. Income insufficiency, lack of stable housing, substance abuse accompanied a lack of access to treatment, and co-infection with Hepatitis C result in worse outcomes than the ones I presented above. Add to that racism, classism and homophobia. There's a whole world of people who are, unlike me, neither white nor upper-middle-class, who have to deal with HIV on a daily basis and who don't even remotely have access to the resources I try not to take for granted but frequently do.

I was reminded today, during a ceremony at the National AIDS Memorial Grove, that the fight to end AIDS is a marathon, not a sprint. Those of us who care have to commit ourselves to stay in it over the long haul.

I do what I can. I raise money for the San Francisco AIDS Foundation by participating in AIDS/LifeCycle every year. Not everyone would like to support the AIDS Foundation of course, nor should anyone feel obligated to do so. There are many other ways to donate money and time and many other organizations worthy of support.

I've looked at where I am in my life as far as HIV is concerned. Until the day there's a cure, I'd like nothing more than for those people living with HIV (not just people with HIV of course but this diary does concern HIV) who don't have it as good as I do to still be able to contemplate old age whether they're young or old, regardless of where they live and whether they're rich or poor, whether they identify as male or female (or something outside of that dichotomy), regardless of their race or ethnicity, their sexual orientation or even their politics. Everyone deserves to live a long and decent life.

Originally posted to sfbob on Sun Dec 01, 2013 at 01:59 PM PST.

Also republished by Kitchen Table Kibitzing, HIV AIDS Action, and Community Spotlight.

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