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In Their Own Words: NIH Researchers Recall the Early Years of AIDS
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In any event I thought we really hadn't gotten into it. We had met all the officials and been to the hospital. We hadn't really met the people. It's somewhat of a ritualistic society. There still is quite a bit of the African culture there. They have the Hoogan, which is the witch doctor that many people trust. Many people go only to the traditional doctors in extremis, and then there's not much that can be done. In any event, I was there by myself for the last day, and I was talking with an immunologist down there, [Dr.] Robert Elie. A cab driver was driving me back. This is an awful story but it's sort of funny. Driving me back, the cab driver looked over at me and he said, “Would you like to meet some nice Dominican women?” The Dominicans are fairer-skinned than the Haitians. I thought, “Oh, God, what have I gotten myself into?” It then hit me, “This might be my chance to meet some people.” So, I said to him, “No, but would you know where I might meet some men?” I took the chance. He was shocked. I explained to him why I was there and why I made that request. He'd actually seen something about this on TV. We'd been on TV when we arrived. So, he took me to one of the Hoogans, witch doctors. So we were sitting down, talking over rum and coke. He'd seen these people with fever and said he could take care of them; he used a special extract from the aloe plant. So I said to him, “Are there gay men here? You hear that there are. But we haven't seen any. Could I meet some gay men in this area, just to talk to them and their friends?” So, he [the Hoogan] talked to the cab driver in Creole, and the cab driver took off and drove me around. I was really getting a little bit scared because we were in a part of the city that is pitch black. They shut the electricity off in parts of the city at night. It was pitch dark and I didn't know where we were. He stopped the cab.

We got out of the cab and knocked on this door. It had a little slit. Somebody came up and opened the slit, and they spoke Creole back and forth. I have no idea what they said; finally the door opened. The guy on the other side had a gun tucked into his pants, and I thought, “Oh, my God, they are having me assassinated, or something. What have I done now?” But everyone was pleasant; no one looked sinister. They all looked pleasant. We walked in; went through another door and there was this neon sign saying, “Ricky's Tropical Bar.” So, I was in a resort where there were only two people, who both worked there. There were no tourists. I was trying to get information, like “Have you seen any new diseases?” etc., etc. We had no luck; no luck at all. So, we left there and he [the cab driver] tried to look for another place; he couldn't find it. So the cab driver stopped and picked up a male prostitute to help us find another place. That was a little uncomfortable. He put his hand on my shoulder and said, “Well, I'll come see you tomorrow.” And, I said, no, I was leaving the next day. In any event, he took us to another place that was closed. Just closed. We were knocking on the door. A man on the roof, with a rifle, yells down in Creole back and forth. Then the cab driver said, “They're closed until Saturday. Only opened on Saturday.” So, all I could glean was the gay tourist trade had gone down, but I really got no information about whether or not there was a new disease. There clearly was one, but the question was, whether it in gay men, or in the general population. That was a question that remained unanswered at that point, which later on was answered to be found more in the general population. It seemed more like the African picture than the picture in the United States. But that was my one experience over there. When you said international that's what you meant? You didn't mean international conferences, right?

Rodrigues: Right.

Lane: The other thing that I did, subsequent to identification of the virus, was go to Khartoum a couple of times. I had a friend in the state department who was stationed in Khartoum. That's in the Sudan where the White and Blue Nile come together to form the Nile. I had mentioned to the associate director for international affairs that if they ever needed someone to go to Khartoum, I would be willing to go because I had a friend there. So when they were setting up some collaborative agreements on a variety of infectious diseases, they asked me, since they needed somebody to go over and see what capabilities they had. I went over there and met with some of the people in the Sudan and helped them establish their AIDS advisory group. They are a fairly progressive country. I wouldn't have thought that from what I read about it in the newspaper. When it came to health matters, they were actually quite progressive. It was an English colony, so it was easy to communicate. Most of the people spoke English, actually spoke fluent English. The second time I went over, we had sent some equipment over to help them set up an HIV testing lab. I actually did a TV interview live. Until they told me, I didn't know it was a live TV interview. In there, I mentioned how the disease was spread. At that time, it was still a very strict Muslim society, so they weren't real open about some of those things in public. But privately, they were a fairly progressive society. That was enjoyable. I still have contact with the people over there. More recently, I've been to Russia and Poland on a collaborative agreement between the United States and the USSR [Union of Soviet Socialist Republics]. That was sort of interesting, but nowhere near as exciting as my other two trips had been. It was much more predictable.

Harden: One of the major problems that you're pointing out seems to be that the general level of hygiene in the hospitals was a major factor in the transmission of AIDS.

Lane: A guy in Poland brought it all home to me when I was saying, “Well, you know, what are you going to do about this [AIDS] and condoms and AZT...,” and he says, “Listen. People can't eat. You have got to put it into perspective.” I was there in October, so this was during their transition. He was an academic surgeon and was going to be joining the Ministry of Health in the new government. Clearly, the problems of health care worldwide are great, and AIDS is going have a major impact on them. You have to be ready for it; but the pressing needs of today sometimes make it hard to look at tomorrow.

Rodrigues: Well, I think that finishes my questions.

Harden: I was going to ask about where you are now and where you see research in the future. Is there anything else you want to bring up?

Lane: I can tell you where I'm going–that's sort of pleasant aside. As you said, there has been an evolution in immunology over the last few years. Taking cells and describing what they did has gone quite a different way with the identification of the virus. What I'm currently doing is taking different genes of HIV, transfecting them into T-cell lines with known function, and then studying how those functions are altered by infection or transfection with the different HIV genes. Clinically, we've grown from Henry [Dr. Henry Masur] and myself seeing patients in clinic to a much larger scale. I don't know how many people we have, actually. We currently see about 400 patients a month in the outpatient clinic, which for NIH is a lot of patients. We're moving from the 11th floor–half of the ACRF [Ambulatory Care Research Facility] Clinic on the 11th floor, to the entire ACRF clinic on the 8th floor. We have a good integrated team with primary care being delivered by registered nurses, with the physicians to back them up. We're actually trying to model the best way to do clinical research. A side contribution we can make from the resources we've gotten for AIDS is to try and help people in other settings as well by looking at as many things in experiments as we can. So we look to therapeutics now with combinations blocking different stages of viral life cycle, and also look at antivirals plus immunologic reconstitution. That's where things are.

Rodrigues: That prompts one other question for me. How did you go from the informal network of collaboration to the formal group that you have now? Was that a process of people finally saying, “Look, this has gotten too big for us to handle this in an informal way. We need a more solid administrative structure to handle this activity?”

Lane: It just happened over time. It's happened gradually. There was no decision to do things differently. The first thing that happened was we approached the Clinical Center Nursing Department to give us two nurses dedicated solely to AIDS, for whom we would develop a new role. That role now has the name of case manager and is taken from other similar roles where the nurse provides the primary liaison between the health care team and the patient. We did a study with a drug called HP-23, using that model. That was the first time we tested something over there with that particular model. The model worked well, and then it went from two nurses to four nurses. Having got the four nurses, we said we really needed to have a head nurse to help supervise and six to eight other nurses. Then we needed one to run the studies; we needed study coordinators; nurses at a higher level; seven study coordinators, and then Henry and I needed more doctors. We couldn't spend all of our time taking care of patients and still get other things done. So we hired an additional four doctors to help do a rotation; so, it just grew. It wasn't anything that happened as an event. It just expanded gradually, just as I was finishing my fellowship. Now I have more people that I'm responsible for, and my ability to just go over and talk to somebody has just diminished some. That I don't like very much and so I try and recapture it. But I have a hard time doing so because there's always some administrative detail that has to be taken care of.

Rodrigues: Is that's why when we were talking about the earlier days, you referred to them as “great days”?

Lane: Yes. I have fond memories of the time when the work was so much and administrative stuff was so little. Now it's a little bit different. We're still trying. I enjoy seeing people who are coming in now being able to do that. I think it's very important to maintain a multidisciplinary approach. So we have now people from NIMH [National Institute of Mental Health] come in and help us with neuropsychology; people from NIDR [National Institute of Dental Research] look at oral manifestations of HIV. There's an interest and a discipline to not just do it, but to do it the right way–identify who's going to have the leadership role and make sure that people funnel in through that person and try to maintain that same sort of esprit d'corps in clinical areas.

Harden: We thank you very much.

Lane: Sure, it was fun for me too.

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