In the early 1980s, Dr Susan Allen was a resident in pathology at the University of California, San Francisco (UCSF). Her first research work in the field of HIV was conducted in Africa, and was funded with seed money from UCSF and the State of California. In 1988, while studying HIV among pregnant women in Rwanda, Dr Allen found that 14% of her research subjects did not share the same HIV status as their partners. This finding prompted further research on couples counseling and testing and prevention in discordant couples.
Heather Dron, MPH, HIV InSite: How was it to work as a resident at UCSF in the early 1980s?
Susan A. Allen, MD, MPH: It was in the early days when we weren't sure how dangerous it would be if someone got a speck of blood on themselves, or if they stuck themselves with a needle. There was a study started at the time of needle exposures (sharp exposures) among health care staff. I convinced all of my fellow pathology residents to sign up for that study.
What attracted you to this field?
I was between medical school and residency and did a 3-month course for a diploma in tropical medicine at the Liverpool School in England. I was raised in developing countries, and it was always my plan to go back and work in a tropical underserved area. When HIV hit the radar, within a couple of years of recognizing cases in the United States, there were cases being reported in Africans, first in Africans in Europe, and later in Africa. So I became interested because it looked as though it was a tropical disease.
You originally thought you would study parasitic disease?
Yes, in fact my first grant was along the lines of, "How does this new disease affect the endemic diseases?" and not so much "How the endemic diseases affect this new disease?" My initial interest was much more on the existing diseases and how this new thing was potentially related to them, but then like so many other things, you just get consumed by the HIV focus.
It sounds like now it's hard to stay out of it, but initially why did you persist in perusing AIDS research in spite of the early challenge?
I had a lot of support from some key faculty at UCSF, and that was really helpful: Steve Hulley in epidemiology; Jay Levy (I carried some samples back from Rwanda to his lab in 1985); John Ziegler. Both of my chairs (I had a joint appointment in epidemiology and pathology) while I was living in Africa were women. They were the only two women chairs at UCSF, and so it was kind of lucky. Dee (Dorothy) Bainton was chair of pathology at the time. I had a lot of strong mentors. I was trying to look at the relationship between those two things; I tried to consult people who were experts in all of the relevant domains.
|"I carried some samples back from Rwanda to Jay Levy's lab in 1985"|
Nobody really knew much about this new disease in Africa at the time. It had been reported by some Belgian doctors, but the manifestations seemed to be different, and in 1983 the blood test hadn't been developed yet. People were asking, "Is it the same thing, or is it not the same thing?" I was very interested in finding out, so I took a six-week epidemiology course designed for residents and fellows which helped me write grant proposals. I received some small grants in 1985-1986 and my first NIH grant in 1987. But a lot of it was continuing to be encouraged by people who said, "This is important and you can do it."
Would you like to comment on some of the major successes and potential missteps of research efforts?
I moved to Africa in 1986 and I lived there for the next 9 years, and those were the days before email, so I missed a lot of what was unfolding in San Francisco, for example. I tried to keep up as well as I could the one month a year I would come back and through hard-copy correspondence, but I was pretty consumed with getting things set up in Africa and what was going on there. Of course, in retrospect, from And the Band Played On and from the month a year I would come back, I could see that a lot was moving in the United States.
Also, being in California helped. The State of California for the first couple of years of the AIDS epidemic provided a lot more funding than the U.S. government did, so it was a good time to be on the west coast from that perspective.
|"Dealing with two people as a unit is a more efficient approach than trying to deal with them as individuals. Why go through exercises like empowering them to go home and talk to their partner when you could have them and their partner come in and talk to you?"|
To me what was a missed opportunity then, and continues to be a missed opportunity now, is the recognition that most HIV is sexually transmitted and if you are going to do prevention research, you have to deal with the dyad, the two people who are having sex together. Everything from the prevention standpoint to the research standpoint. We've been able to do that with couples testing and discordant couples in Africa, but I think more should be done. For example, a colleague here at Emory has just submitted a grant to the NIH to study couples testing in gay men in the U.S., and I wonder why that wasn't something that got looked at early on? I'm sure it did, in small focused ways in the research sector and so forth, but it definitely is not a standard of practice in public health. In any of the health departments here in Atlanta, if you turn up with your sexual partner, they'll separate you and test you as individuals. All of that continues to just baffle me, here twenty-plus years into the epidemic. How is it that we haven't recognized, outside of small focused research efforts, that this is the way to go?
Was it initially fear of contact tracing or anything associated with contact tracing as a potentially stigmatizing or an exposing thing?
I think that may have been a part of it, although, sometimes the patients were asking for it. In a situation where the patient is asking for it and you are still reluctant, that doesn't make any sense. There were concerns about civil liberties and disclosure, and all of that, but I don't think that that was the major concern. I think that it's just laziness on the part of people who are systems people, who provide services or conceptual people who are thinking about research questions. I just think that it has been slow for them to catch on that dealing with two people as a unit is a more efficient approach than trying to deal with them as individuals. Why go through exercises like empowering them to go home and talk to their partner when you could have them and their partner come in and talk to you? Whatever the obstacles are, I'm not sure that I understand them very well and I'm not sure that they really hold water.
What are the major issues facing HIV researchers and policy makers today?
Well, everyone has their particular focus, and that (couples-based interventions) is one of my themes for a long time and I continue to raise it. Until it has become a standard of care, I guess I'm going to have to continue to repeat it, even though people are tired of hearing it. We should try this in a more systematic way. I hope that in five years there is more of that. I do see a lot more now that the procedural manual for couples testing is up on the CDC web site, I think that should help.
What is the most important lesson you have learned over the past 25 years that HIV researchers and policy leaders should keep in mind as we move forward?
|"If it's evidence based, stick to it. Eventually it will come around."|
Reading the writing on the wall is the best way to go; you can't let the politics or the fact that people may not always hear what you're saying or agree with you stop you. If it's evidence based, stick to it. Eventually it will come around. There certainly have been a lot of things in the HIV epidemic that have not been evidence-based. If we've learned anything from that, or should have learned anything from that, it's that you always look back and think we really could have acted on this ten or fifteen years ago. What we need to do is look at what we know now, and look ahead and say, I don't want ten years from now to be saying, I really should have acted on that then.
Do you think that HIV has fundamentally changed the way that we think about and research infectious disease?
Yes. HIV was one of the first things that crossed the boundary between infectious disease and cancer, specifically when Kaposi sarcoma and lymphomas began to appear and the causative virus was found to be of a class of viruses that are also associated with oncogenic processes. Cancer doctors understand that you are managing cancer, you are trying to cure cancer, but a lot of times you are trying to manage cancer and prolong life. Infectious disease doctors are all about getting in there and curing. The chronic infections that we were used to dealing with, hepatitis, herpes, were rarely fatal. HIV was new; there just was not any other infection out there that anyone had dealt with that was similar. The combination of those characteristics: sexual transmission, viral, fatal, slow to cause disease, that was new.
What are some of the findings from HIV research that benefited research into other diseases?
There has been a lot of information gained, in the basic sciences but also in the public health domain and in clinical management. HIV weakens your immune system and then you get lots of other infections, so we know a lot more about those other infections. Also, the pathogenesis of how it causes disease and how it's transmitted, I think there is a lot of very basic medicine that we have learned.