Office of NIH History
In Their Own Words: NIH Researchers Recall the Early Years of AIDS
Previous Page | Next Page (2 of 7) Transcripts  
       
 

Harden: I want to ask one more question about your background, because we covered this in terms of your motivation. Was your parents' interest in social issues and yours rooted perhaps in religion or rooted in civic activity? Can you pin it down? Was it both of the above?

Grady: I think it was probably not one over the other. Certainly my parents are very devoutly Catholic, and there is some service in the sense of the Catholic religion. But I think it is goes beyond that. There is a civic duty. Again, although my father was the orchestrator of much of the activity that I described earlier, I think perhaps the influence in this regard was really my mother. She was more behind the scenes, but always there, always pushing it. Still, to this day, she is very active and does a number of things in the community.

Hannaway: That is good to hear. We want to know about your coming to the NIH, which was in 1983, and you just mentioned that you knew already that you were coming when you were at the governor's school. Can you tell us how it happened that you came to the NIH, and then we will ask you questions about your experiences here.

Grady: We know how people put together their motivations in retrospect. I had a job in 1976, 1977, and 1978, maybe, at Tufts New England Medical Center. I worked there on an NIH-funded clinical study unit–it was a GCRC [General Clinical Research Center]–and I loved that job. Yet–I was just telling the story to someone the other day–we, at that time, had two major categories of studies. One was endocrine and the other was hematology-oncology, and both of them very powerful experiences. But the hem-onc studies were primarily bone marrow transplants for children and for some adults with leukemia or aplastic anemia. These were the early days of bone marrow transplants, where the patient was in what they called the life island, that is, they were completely surrounded by plastic. Everything that we did, we did through double layers of protection and through this plastic. It was a very elaborate contraption. Most of those people died; almost all of them died.

I can remember at the time being motivated to go back for a master's degree in public health because I could not quite justify in my mind this gross expenditure of resources, time, money, and people's efforts on something which ended up so much a failure. That is why I went to the school for public health and did the public health degree, taught public health, went to Brazil, which I would call public health work, although I was in a hospital, and then came back to the research, which was an interesting cycle.

But when I came back from Brazil to the United States, I had an image in my mind of what I wanted. I said to people that I wanted the perfect job and the perfect place to live. Everybody asked, “Well, what is that?" I explored several possible jobs in New England, which was where I had been previously. I almost accepted one job, which was a research job also, at the Brigham [Brigham and Womens Hospital].

But I was very much attracted to the research aspects of being at the NIH. I knew Washington a little from having gone to Georgetown [University School of Nursing]. So I specifically wanted a job at the NIH, and I called the Nursing Department and basically was told that there was nothing. Then I saw an advertisement for a job at the NIH in the New York Times the following Sunday, and I said, “How could this be?" I responded to the advertisement. I became pretty much open to any possibility in terms of a job.

In fact, the job in the advertisement that I responded to and applied for was a job as an educator. When I came and interviewed and met the people, the person who ultimately hired me said, “I want to hire you, but not for that job. I want you for a different job.” I said, “Tell me more.” I came as what is called a clinical nurse specialist; the position happened to be in the infectious disease area.

Much of what they wanted me to do initially–I do not know what the right words are–was to advance the level of knowledge of the nursing staff in immunology, because immunology was driving many of these infectious disease studies, and certainly much of the work in that area is and was immunology. So I came to the NIH and immediately, one of the first things I did was to develop a course in immunology, which I taught for several years to the Nursing Department. In fact, somebody asked me this morning, “Why can't you teach that course again?” I said, “My life has taken a little bit of a different direction.”

Harden: Let me get you to explain where you learned your immunology, because that is the time when cellular immunology was just...

Grady: Exploding.

Harden: I tried to find materials about cellular immunology at that point, and it was very hard.

Grady: It was very hard. When I took the job, the person who hired me said, “We want you to teach a course in immunology.” I said, “I don't know anything about immunology. How can I teach immunology?" She said, “You know as much as anybody else. You find out, and then you teach the rest of the staff.”

I took two, maybe three, FAES [Foundation for Advanced Education in the Sciences] courses in immunology, I read many books, and I talked to all the investigators in NIAID [National Institute of Allergy and Infectious Diseases] that were doing intramural immunology. After everything that I read, I would go back and say, “This doesn't quite make sense. Explain it to me.” After a time I felt like I knew a little of the basics. As I put the course together, I relied on the people in that institute to help me make sure that the things I was saying were correct. They reviewed materials for me and helped me update things. It was a very supportive group to work with in terms of some of those efforts.

Harden: Let me pin down one more matter here, too. You actually were hired as a nurse. You were paid by the Clinical Center, and the Clinical Center assigned you to the NIAID wings?

Grady: That is right.

Harden: Did you ever move into working for NIAID?

Grady: No.

Harden: It has always been the Clinical Center?

Grady: Yes.

Harden: We have been trying to sort this out with everyone we interview.

Grady: No, I never worked for NIAID. I worked during those years with NIAID because I was assigned to those areas clinically, but I always worked for the Clinical Center, until I went to NINR [National Institute of Nursing Research].

Then, clinically, AIDS was beginning on those units in those days, and it was really only beginning. I mean, there was a handful of patients, but it was clearly...

Harden: Is this 1983 that we are talking about?

Grady: 1983.

Harden: Yes.

Grady: But it was clearly something that was going to grow. That was obvious. And there was much interest on the part of the investigators and a lot of interest and concern on the part of the nurses. It was a natural thing for me to start to learn as much as I could about it as things were being discovered; and that is what I did. It became, over time, the area on which I focused the most attention. In the very beginning, that was not true. I learned as much as I could about it, but I was also learning about Wegener's granulomatosis and the other vasculitis diseases, and some of the allergic diseases that were being seen up there, and these infectious diseases, about which I felt like I had a little bit of an edge on information, since I had seen some of them in their real setting and other people had not.

Hannaway: Could you describe your first involvement with AIDS patients?

Grady: Yes, I think I can. Some of that is a little hazy. Some of the patients that I remember from late 1983 and 1984 were the patients to whom I became the most attached. I learned an incredible amount from them and became very close to some of them. Amazingly, there are two who are still alive and come here, and whom I still try to see whenever they come.

But in those early days, there were a couple of studies that I remember very specifically because of the nature of the studies and because of some of these individual people. One of them was a study of IL-2 [interleukin-2], which, ironically, is still going on, but in those days it was a very different product and there was a very different approach and many problems in terms of the way it was tolerated by people. Even though I was a clinical nurse specialist, I did take a couple of patients as primary patients, and the patients–I cannot remember if I volunteered for them or was assigned to them–were HIV patients on IL-2 protocols.

Harden: You, as a nurse, at that point interfaced with the physicians whose protocols these patients were on?

Grady: The clinical nurse specialist's job is a very interesting job. It is in some respects undefined, and in other respects defined in a way that means it covers a lot of territory. They talk about it as advanced practice, which means you can and do take care of patients, but the primary responsibility that you have is not to have a caseload of patients, but to mentor and oversee the practice of the other members of the nursing staff and bring it to the highest level possible. That is done through modeling, education, working together, hands-on stuff, and research, to the extent it is possible.

I did take some patients in those days, but I spent a lot of time with the staff. With the investigators, I felt as though much of what I was supposed to do was to help make not only the goals of, but also, what was probably more important, the day-to-day operational aspects of the research understandable to the nursing staff. I also had to facilitate it so that the people would do what they had to do according to the protocol in the way that it got done and was of high quality, but did not take precedence over taking care of the patients. Do you see what I mean? It was somewhat of a balancing act in that regard.

I spent a lot of time reading and interpreting protocols, putting together the tools, testing out equipment, teaching nurses about the studies, developing educational materials for patients about the studies that the nurses could use, and things like that.

Hannaway: What problems would you say came to the fore most quickly? Was it concerns by nurses about safety, either their personal safety or the difficulties of working with patients with this syndrome, and all the range of infections that occurred? How would you describe it?

Grady: Certainly the concern about safety was one that was always there. But I have to say that, in my opinion, the Clinical Center did a much better job of dealing with that than did many other institutions. I had the opportunity at times to talk to nurses in a variety of other institutions–private, around the country, local, both. In some places, safety was a very big problem. In this building, it was not. It was a concern. Everybody was always concerned, legitimately. We did not know what we were dealing with in those early days. But the investigators that we were working with and the hospital epidemiology people were very good about telling us everything they knew and bringing everybody together in a room and saying, “This is what we know, this is what we think. Let's try to work on this together.” That gave the nurses confidence that they were not being led down a path of deception, that if anything became known about danger or precautions that should be taken, we would know about it as soon as anybody else did.

I know that a couple of years later, in 1986, there were still concerns. I was thinking about that this morning because we had a conversation upstairs about working with tuberculosis patients, and the nurses' concern about safety is legitimate. In 1986, when I was pregnant and was working in the area, there was still confusion about whether or not it was safe, whether pregnancy was an issue in terms of immunosusceptibility or something like that. At the time, I also remember, again, talking to all the people around and getting the data that was available and being pretty assured, both in my own mind and by the people that I spoke to, that short of a needlestick or something, in being pregnant, I probably was not at any risk from the HIV. Now there were other disease problems, CMV [cytomegalovirus] and some of the other things that some of the AIDS patients and others had, that may have been more of a problem.

continued on Page 03

 
 
 
       
Previous Page | Next Page (2 of 7) Office of NIH History | NIH| DHHS