Dr Robert Massie Discusses Why Normal Life Expectancy Is Not So Easily Defined

Robert K. Massie Jr, PhD, MA, of the Society for Progress, was born with severe factor VIII hemophilia in August 1956. He contracted HIV in 1978 and later hepatitis C, both from contaminated blood products.

Robert K. Massie Jr, PhD, MA, of the Society for Progress, has been an Episcopal minister, a professor at Harvard Divinity School, and a nonprofit CEO, specializing in environmental questions. He was born with severe factor VIII hemophilia in August 1956 and contracted HIV in 1978, later also hepatitis C (hep C), from contaminated blood products.


What age-related factors should patients be aware of as they live longer with any, or all, of these conditions?

Well, I think we're in unknown territory. In many ways, obviously, each of these illnesses had a very high mortality factor, at one point or another.

When I was born with hemophilia, the life expectancy—which was an average—was in the early 20s. Some people died as children, some people made it into adulthood, but it was a volatile and very painful illness, as many people may know. At least that was before you could treat the joint bleedings before they became severe and immobilized you and put you into terrible pain.

So I'm just getting older now. I have the problems of an older man. You know, skin and hearing and sleeping and all that kind of fun stuff that happens to you when you get older. And then as far as the other elements, right now I am not walking because I've had 7 or 8 surgeries on my left knee. And so I walk with a crutch or cane, but mostly with the crutch.

And then as far as HIV, or hep C, we really don't know. The HIV presumably can be controlled and suppressed between the combination of my immune system and now the medications that I now finally am on. And the reason I'm on those is because to get a new liver, they had to suppress my immune system that had been doing so well against HIV. So they thought, “Okay, we're going to have to slow down this powerful immune system, so now we'll give you the heart drugs.”

So I think we just don't know how normal a normal life expectancy I might have. I mentioned I'm 64, and I seem to be doing pretty well. But any number of things could start to break down or fail. So you know, the positive side of survivor things is that you might find yourself older, and you don't know what's gonna happen next. But who knows what's gonna happen next? And I'm kind of used to living with pretty big uncertainties over my head.