Some aspects of seeing a patient newly-diagnosed with HIV haven’t changed much over the years — for example, the emotions in the room remain a mix of fear, shame (note to world: this is still a highly stigmatized disease), incredulity, and ultimately relief in finding a clinician who is comfortable with the condition.
But a lot has changed, of course, due to the availability of effective antiretroviral therapy. To illustrate, here’s a commonly-asked question, especially from newly-diagnosed patients and their loved ones — in fact, I heard it just last week:
How long can a person live with HIV these days?
It’s also a popular question I get from my friends, family, non-HIV/ID colleagues, medical students, cab drivers, and anyone else who happens to find out what I do for a living. You’d think with so many people asking, I might have a better idea of the answer, but for now all I can manage is an estimate.
I work with a group that does computer simulations of HIV disease; a paper published a couple of years ago conservatively estimated the survival time after a patient enters care to be 24.2 years. For the super patients — never miss a pill, quit smoking, wear seat belts, and remind us about scheduled health maintenance tasks — this is no doubt an underestimate. But it might be an overestimate for their Goofus counterparts, especially if they are coinfected with hepatitis C, engage in various insalubrious addictions, and have that selective inability to understand the words on the pill bottles dispensed by the pharmacy.
So what do I say when asked this question? One thing I emphatically do not say is “24.2 years — that’s 8,833 days, in case you’re wondering, so plan your magazine subscriptions accordingly.” First, this estimate was derived from averaging a million “patients” going through a computer model, and do not apply to an individual; second, who knows what’s going to happen 5, 10, 20+ years from now? Instead, I provide some reassuring generalization, such as, “No one should die of AIDS anymore — treatment today is that good.”
This usually does the trick. But any other advice for managing this tough question would be most welcome.