Office of NIH History
In Their Own Words: NIH Researchers Recall the Early Years of AIDS
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There is a story that I have told many people. We were fairly clear that CMV and pregnancy was–we still know that–and is a problem. There were people who advised me that there were some invasive kinds of procedures that I should avoid doing with the AIDS patients because they were heavy carriers of CMV, and I should use certain precautions, which I did.

Then I remember a patient, whom I took care of very intensively, who had eosinophilia, which is very different, had nothing to do with HIV, and he was dying. We were all over this man–and I was pregnant. Only later, by autopsy, was it discovered that he died of CMV pneumonitis. So we were doing chest tubes, and he was spewing sputum and coughing all over everybody. Those are the things that happen. You cannot predict. You cannot always protect yourself, but I guess I was lucky.

Hannaway: You mentioned the hospital epidemiologist, whom we have interviewed. Did you have much interaction with Dr. [David] Henderson? It sounds as though a clinical nurse specialist would be part of a team...

Grady: Yes, absolutely.

Hannaway:...working to develop guidelines and procedures.

Grady: We did, for several reasons. David was always very available to the nursing staff–and that was not just our group, and I think the world of the Clinical Center Nursing Department. He was very available, very up-front with information, responsive to any question and honest about what he knew and what he did not.

Harden: This was something he stressed in his interview.

Grady: He was, and he was very good at that. In addition to that general way he was with all the nursing staff and being very sensitive to this particular issue around the hospital, he happened to be located on the 11th floor [of the Clinical Center], which is where we were, and also he often went on rounds with the NIAID group. I and the 11th floor nursing staff had additional access to him and to some of the discussions. Plus we had the HIV investigators up there, the people that were doing... certainly they were not the only ones, but a large part of what was going on in the early 1980s was being done right there, certainly the clinical stuff, and in the NCI [National Cancer Institute]. There would be discussions, some more formal than others, about this.

Harden: Can you talk about some of the major contributions made by the nursing staff?

Grady: Yes. Again, this was an area in which nobody knew anything to start with. As I may have already said, it became clear from my position that it was something that I needed to be very involved in, not only for helping in the local 11 West and 11 East areas, but in terms of being in a place where I had the opportunity to think through what the nursing issues were and to share that with people beyond our local group. Actually, Barbara [Baird] and I and others worked together in those early days. We would be giving lectures to people in 1985-ish, 1986. We were invited to many places to talk about what it was like to work with AIDS patients.

Harden: Outside the NIH?

Grady: Yes.

Harden: Around the country, or mostly locally?

Grady: Some of each. In about 1985, I think it was, there was a nurse in the NCI, Joan Jacob, who also worked with us a lot on some of these issues. She spoke to a group, and I do not remember their name any more. It was a Baltimore-based organization that basically put together educational programs for nurses and sold them to places around the country. She got us hooked into this group. It was primarily she and I in 1985–although I think Barbara probably did some of them, or maybe did some later–who gave these all-day seminars to groups of nurses all around the country. I remember going to Detroit, Dallas, somewhere else in the Midwest, like Dayton, Ohio, or someplace like that. I went to at least five or six different cities around the country to give this canned program that we had put together, a day-long seminar, which basically went through what we knew about the epidemiology of AIDS, what we knew about the clinical manifestations of these patients, and what we knew about treatment, which at that point was virtually nothing. There was a large section on nursing care, what kinds of nursing care were appropriate, what kinds of nursing diagnoses made sense. Then there was a large section on the issue of fear and contagiousness.

Harden: What did you hear from the people you were speaking to? Was it different in different places, or were there common themes?

Grady: It was a little different in different places. Certainly there were always people who were interested in how to do it better. “How do we deal with this? Anything you know that can help us take care of these patients, we want to know.” It was always usually the minority, though, somebody in the group or a couple of people in the group, at least, who said, “It is just too dangerous. Why should I put myself at jeopardy, and my family?” “No matter what you tell me, I don't believe you. It's just not worth the risk,” and sometimes even more damning statements than that, but basically that was the sentiment.

Harden: Did you feel obligated in your role as a teacher to argue the case with people who took such a position, or were they just allowed to express their opinion?

Grady: I always argued the case. But there was always a point at which I gave up. Some people you can talk to and some people you cannot. After a while I would begin to be able to figure who they were, or I thought I could.

Hannaway: You could differentiate between them.

Grady: Yes.

Harden: Are there any procedures or policies that specifically stick out in your mind in the 1983 to 1986-1987 period that you thought were either very good or not so good in the way that the staff at the NIH dealt with AIDS patients?

Grady: That was a critical time in terms of being the time when the virus was actually discovered, and that confirmed what many people thought, that it was an infection of some sort. Even at that point, there was a fair amount of epidemiological evidence that the modes of transmission were limited. I think, in those days, there were changes in how we did precautions and things like that. But most of what I remember was confirmation of what we were already doing, to tell you the truth. There was a sense that we were on the right track even though we do not have all the information.

When you had asked before about contributing policy, contributions to nursing, or things that nursing did, I think the other thing that we were able to do here at the NIH that was helpful to people in those days, besides present lectures and so on, was to put together some publications. Some of them were informal “this is what we do here” kind of material that we would send out to anybody that asked–care plans and so on–and others were real publications. Barbara did some and so did Joan Jacob and I. There were others within the Nursing Department. Debbie Trivet in the ICU [Intensive Care Unit] was involved; Sue Simmons from Mental Health [National Institute of Mental Health]. There were people around who all had their areas. We all worked together, I believe, very nicely in terms of thinking through what made sense and trying to figure out how to make that available to as many people as possible.

Harden: Was there a strong sense that you were leading the nation, that what you were writing was going to get disseminated around the country?

Grady: I am not sure that there was a strong sense. There was some sense of, yes, we have to tell everybody what we know because we know more than they do. I can remember actually–I am sure others have echoed this–that sometimes people would call us and say, “Send me the written materials on such-and-such,” and we did not have any. I mean, we would have what we did. We would know it. We did not have the time–we were pretty busy–to write it down into a formal procedure or policy, or even a “this is how it should be done” kind of article. We did not always have something in writing. But when we did, we let it be known.

Hannaway: Would you see nursing journals as the primary outlet for publications to inform the nursing profession?

Grady: Yes.

Harden: In 1989, you published an article in Cancer Nursing about the impact of AIDS on the nursing profession. I notice...I can quote this to you. I wrote it down primarily because I saw it in many of your articles, the same ideas that you had obviously dealt with this: “AIDS has confronted us with groups of patients whose lifestyles we may not know much about, may not understand, and of which we may disapprove. Each nurse must examine his or her own attitudes about and comfort with issues of sexuality, homosexuality, substance abuse, debilitating illness, and death, and each nurse must attempt to come to peace with these issues before being faced with a patient or a significant other who needs support and wants to discuss his life.”

Now, was it the whole of your experience that inspired this statement, or were there particular things that inspired you to write this?

Grady: I think both. I think the reason I believe that is–although there was the issue that I have already described, that people were afraid of the contagiousness–that was not the whole story. I mean, some of them were, but there was also this, “I do not even want to hear about it because I do not like these people,” and some people were very blatant about it. They were happy to say, “I don't like those people, I don't want to take care of them, they deserve what they got, and I am not risking my life to take care of them.”

Harden: Did you hear that much at the NIH?

Grady: No. I do not think I ever heard it here. But I heard it a lot everywhere else, outside. I remember one person saying to me one time at a talk somewhere, “You could say anything you want. You don't take care of patients. You don't know what it feels like.” And I would say, “Sorry, but I do take care of patients and I do know what it feels like.” I think the reality is that those things have not entirely gone away. There are people who do not like homosexuals. There are people who do not like substance abusers as a category. They do not even think about the individual person. It is just, “I don't like them. They shouldn't do that. Why should I take care of them?” And it is not just health care workers. It is all kinds of people, patients in the next room.

I think that the real truth–and I am glad I said it in that article–is that in the health care professions, we have not–maybe there was not a reason to, but maybe there was–spent enough time understanding how much a person's life habits are important in terms of not only taking care of them now, but just the whole understanding of how they got here and where they are going after this. We have an episode of taking care of them in the hospital. To understand a little about what life as a homosexual is like, who now is afflicted with this disease, and to put that in the context of, “I can't tell anybody that I'm a homosexual. Even my mother doesn't know I'm a homosexual. How can I tell her that I'm sick?” Those things create issues that, as a health care provider, we need to be able to help people with. If we cannot accept that that is part of what makes sense in that context, then we cannot help them.

Harden: Now, what you are saying is the rhetoric is different when you talk with a nurse than when you talk with a physician. This is apparently something that is more common with nurses, to care more about this more simply trying to solve a problem. Would you comment on other differences in how nurses and physicians work with and think about the patients.

Grady: I think they are vastly different. I think some of it is just logistics. When you are a nurse, you are with the person for a lot longer, especially when they are sick and in the hospital. You are with them, at least during your entire shift, in and out, maybe, because there are other patients and things to do, but you are basically there for the eight hours. And you are with them in some very intimate ways. You have to bathe them, you have to help them to the bathroom, you have to feed them, you have to clean them up. I mean, there are things that, relating to another individual, you do not do that unless you are in this kind of special relationship. Even though physicians sometimes do that, and they certainly are in very intimate situations with patients in some ways, it is less often than it is with the nurse. The nurse does it all the time. So you get this sort of image of vulnerability and almost nakedness, if you will, of the patient that you are exposed to, that you know this person at a level that many people do not. It is different from person to person, but they sometimes look to you to understand something about them as a whole person and to be able to help with whatever you can do in your limited context, to put that into the sense of who they are. I have to say, I learned that eloquently from some people that had AIDS that I took care of, because they would say in the beginning, they would... I would talk to them about, “What do you want nurses to know? What do you want nurses to think about when they take care of you?” They would say, “The most important thing that you can do is not to judge me. I am me. I am not some statistic, a homosexual with Pneumocystis pneumonia. Sure, I happen to be homosexual, I happen to have Pneumocystis, but that is just things about me. I am me. I have got my thoughts, my feelings, my experiences, my life, and all those are important to how I am dealing with this, how I am accepting or not accepting treatment, how I am reacting to treatment, what I am going to do when I get out of here, those kinds of things.”

There were several patients along the way who were able to express that in ways that I cannot even do justice to, but very eloquently and very convincingly, that you have to... I am a little bit of an idealist, and so I am of the opinion that health professionals in every profession should not forget that to the extent possible.

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