Researchers are studying the blood of Robert K. Massie, Jr, PhD, MA, Society for Progress, who was born with severe factor VIII hemophilia and contracted HIV and hepatitis C from contaminated blood products. He did not require antiretrovirals until undergoing a liver transplant a decade ago.
Researchers are studying the blood of Robert K. Massie, Jr, PhD, MA, Society for Progress, who was born with severe factor VIII hemophilia and contracted HIV and hepatitis C from contaminated blood products. He has never needed antiretrovirals. He discusses what researchers are learning from the knowledge that 6 pairs of amino acids in his blood may be responsible for suppressing the HIV.
How were you able to live for 30-plus years with HIV without the need for antiretroviral therapy?
My case has been written about extensively, and along with others, [we’re a] very rare group of people. In Science magazine, there's recently been some breakthroughs. To my understanding—and believe me, you should not take my scientific word on this—after a huge amount of really brilliant research, they have now identified 6 amino acid pairs on my genome that seem to be the place that is suppressing HIV. They don't yet know, to my knowledge, exactly what that is. Just think how tiny that is, just 6 pairs that are different—6 pairs of amino acids. What I believe they're doing is they're trying to figure out exactly what do those 6 pairs do. So if you have them, what do you do that somebody who doesn't have them can't do? So that's very promising. And there are all kinds of consequences to that discovery.
But there I should really leave you to the world-class scientists who are working full time on this, as I said, not only at the Ragon Institute [Cambridge, Massachusetts], but around the world. The thing that's funny is that they still draw my blood. And it's gotten to the point where they come to my house in Somerville, a couple of miles from Mass General [Massachusetts General Hospital], because I was saying, “Listen, it's a bit of a hassle and it costs a lot of money to go and park and come on in.” And they said, “Oh, you know what, we'll just come to you.” So every 2 months, somebody shows up at the door, draws my blood, we have a cup of coffee, and they leave. But that's my extent in this world-transforming science: to give a little blood and have a cup of coffee.
How has your perspective on life changed, having almost died from hemophilia, hepatitis C, and HIV?
Obviously, one of the challenges of my life is that I've had to deal with my mortality since a very early age. I've almost died of hemophilia, almost died of HIV, almost died of hep C, almost died in a car crash, and almost died drowning off of Nantucket.
My larger point is that I think modern culture—now remember, I'm a pastor, I started off as a pastor—is depressingly out of touch with the reality of death. And because we're depressingly out of touch, we spend a great deal of time pretending it's not there, it doesn't exist, ordering our lives as though we live forever, running away from people who seem fragile or who are dying, all because of our rather juvenile approach instead of a mature adult approach. And I think people who work in the medical fields are closer to some of these realities, but not necessarily spiritually more mature, because they have the path of, “Well, we can fix this with science.”
So from my perspective, it is a mistake to try to slough off the implications of all of this. When my grandfather died at 81, I asked myself how many days had he actually been alive, and the answer was just under 30,000 days. So we have limited lifespans, and we should live them as though they were as precious as they, in fact, are. And that's something that I wish was the subject of greater discussion so that people could really draw some lessons that would help them live, more sober, thoughtful, joyful lives instead of panicking and running in the opposite direction from something that ultimately they can't escape and that they should make their peace with.
Older people do. I had the privilege in the sense, even though it was very difficult, of making my peace with it earlier. And I think that, as a result, I have a different attitude toward day-to-day experiences than many of my friends who don't even want to talk about this. So I’ll just leave you with that.