Myles Helfand
September 9, 2009

How Long Will You Live With HIV? Take Studies With a Grain of Salt

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"How long will I live?"

It's one of the most pressing, frightening questions facing people with HIV, whether they've been newly diagnosed or have been infected for some time. And like so many other questions in HIV, the answer is frustratingly complex, confusing and ever-changing.

How long will you live with HIV? It depends on who you are. Research suggests that HIVers die sooner if, for instance, they use injection drugs; are coinfected with hepatitis; are depressed; or are pretty much any race and sex other than a white male.

It also depends on where you are. It's convenient to say that HIV-positive people in "developed" countries are likely to live longer than HIV-positive people in "resource-poor" countries like those in sub-Saharan Africa or much of Latin America. But it's more accurate to say that no matter where in the world you're living with HIV, that life will be longer if you have consistent access to quality health care, the most effective HIV treatment and a solid infrastructure (we're talking about the ability to get the basics: emotional support, transportation to a health care facility, clean water, protection from the elements, no wars tearing your villages and cities apart).

It also depends on who you ask. Talk to most anybody who's been a part of the HIV/AIDS community since the 1980s or 1990s, and the answer to "How long will I live?" will probably be, "A hell of a lot longer than if you were diagnosed 15 years ago." It's a lot easier to see today's glass as half full when, for so many years, the ground was littered with the shards of so many shattered lives. HIV treatment has gotten so much better so quickly that it's easy to lose sight of just how much reality has changed for people living with HIV in 2009 compared to 1989, or even 1999 -- or, heck, even 2004, before we said hello to single-pill regimens and integrase inhibitors, and before we knew much of what we now know about the side effects of HIV and HIV meds (and how to prevent or treat them).

But here's the truth as it stands today, for better or for worse: The numbers show that people with HIV don't live as long as people without HIV. We're getting closer, but we're not there yet. A recent study spanning 25 U.S. states calculated that HIVers diagnosed in 2005 could expect to live, on average, 21 fewer years than their HIV-negative counterparts. (That's much more pessimistic than a major international study from last year which predicted that, if you were diagnosed in 2005 at the age of 35, you'd still live to be 72, just six years lower than the average U.S. life expectancy.) If you're a woman, the study suggests, you'll live about three and a half years longer than a man, on average; if you're Hispanic, you'll die sooner than an African American, and both of you will die sooner than a white person.

Here's the thing: In the real world, these two studies and their sharply contrasting, yet very specific numbers don't change anything. It's very easy to read about studies like this and fall into an obsessive trap: "OK, I was diagnosed in 2002, and I'm 33, and I'm a Hispanic woman living in Ohio, so ... multiply by the divisor, carry the two ... that means I'll die on March 29, 2034, during a full moon while Mercury is in retrograde."

Fortunately, it doesn't work like that. These studies are mathematical predictions based on a limited amount of available data. Everyone living with HIV is different: We have different genes, different family histories and different risk factors for all of the unfortunate illnesses and events that can potentially shorten our lives.

So if ever you find your blood pressure rising as you read about the latest study to predict how long you'll live if you have HIV, try to take the findings in stride. You'll die one day. It's going to happen. It may be in 50 years or five. It may because of the HIV, or you may walk across the street one day and get hit by a bus. I don't mean for this to sound morbid or depressing; it just is what it is. All any of us can do is try to make the most of whatever time we're given, however we feel we can best achieve it.

And no study can alter that.

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