March 19th, 2008

How long have I got, Doc?

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.

6 Responses to “How long have I got, Doc?”

  1. Matthew says:

    A doctor I was shadowing the other day told a patient that current data suggest he could have +/- 38 years from diagnosis — qualifying it by saying it, of course, was highly dependent on a host of factors, none the least of which is medication compliance. Was that a number he just pulled from the heavens, or are there other studies differing out there with life expectancy estimates. It seems to be such a difficult thing to study this early in the game.

  2. Paul Sax says:

    Yes, there are other studies with variable estimates … some more and some less optimistic than the one I cited. Totally agree imprecision is inevitable.

    But the bottom line is that median survival is now measured in decades, whereas pre-1996 is was months to years. Amazing progress!

  3. peter wilson says:

    it is amazing, we always had several young men dying at home in the late 80’s but I havent seen anyone die of it since then. Th epulic still sems not to know, I told a ypoung guy only yesterday he was positive and he was devastated. What bugs me is why hasnt the same thing happened to cancer? I know there are improvements but nowhere near as good. Is there really less money in cancer research or is it just that much harder as a multiply caused disease?

  4. Paul Sax says:

    My hunch is like yours: HIV disease is caused by HIV. Cancer is caused by oh so many things. Perhaps it’s best compared to a single kind of cancer, one which we have much better causality data. One could envision the same thing happening to cervical cancer once the HPV vaccine is widely adapted.

  5. Kathy Melbourne, PharmD says:

    I, too, often quote the 24+ years median survival time for patients newly diagnosed with HIV, but I also stress the fact that there are multiple factors associated with “living with HIV” that can shorten that estimate for some patients. For example, Sackoff and colleagues published data (Ann Intern Med 2006;145:397-406) that suggests the leading causes of death in HIV-infected patients in the US are non-AIDS related (particulary heart disease, cancer, etc) and Andrew Phillips presented data at CROI 2008 suggesting the top leading causes of non-AIDS related deaths in HIV-infected patients in France are cancer, liver disease, and cardiovascular disease. Thus, if patients are well controlled on their HIV medications (VL < 50 copies/mL with excellent medication adherence and stable CD4 counts, and tolerating their regimen well) but are faced with progressive hepatic disease, cancer, or CVD, their lifespan may be drastically altered/shortened. So, although there may be “super patients” who do everything for their HIV infection that we suggest they do and “Goofus counterparts” (I am quoting Dr. Sax of course), I think we all need to realize there are patients who fall in between these two dichotomous categories for whom we cannnot predict survival with the data we have at large. As always, more data is needed to further elucidate this very challenging dilemma.

  6. Paul Sax says:

    Totally agree that predicting survival is an inexact science — though I guess that’s what they pay actuaries to do!

    This non-AIDS related complications issue is only going to get larger as the years go by, a true sign of successful therapy for HIV as it was for some heme malignancies.

HIV Information: Author Paul Sax, M.D.

Paul E. Sax, MD

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