Office of NIH History
In Their Own Words: NIH Researchers Recall the Early Years of AIDS
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Hannaway: The person who is sick there.

Grady: Yes. To the extent that you can put yourself in their shoes, you are going to be more helpful to them, more sympathetic to their plight, if you will. Now, you cannot put yourself in their shoes all the way. There is some point at which you do not want to all the way, because you have to keep some semblance of separateness in order to be able to function. But to the extent that you can do that in a healthy way, I think it helps. It helps the quality of your helping, if you will.

Harden: I want to follow up with two more tough questions now. As a nurse, you are bound to have had obnoxious patients, both AIDS patients and non-AIDS patients. And we have heard from other people, I mean, AIDS patients are human. Some are going to be obnoxious, some are going to be nice. How does that affect the quality of your care? Then I am going to come up with a second question when you finish here. What is your reaction, and what did you see? How was the behavior of people with AIDS who were sick?

Grady: Very variable. Some were models of courageousness and strength and worried about everybody around them, and others were a pain in the ass, and that is the way it is. I mean, some people are that way, and some of them have good reasons.

I think one of the things that I believe and that I have said to people is that, just because you are a nurse and you are responsible for taking care of ten people, you do not have to like all ten of them, and you cannot. There are some people you just will not like. The important thing, for my mind, is that you do not not like them before you have met them, which in this case sometimes happens. You learn, before you even come to work, you know there is somebody with AIDS there, or before you ever get the first patient with AIDS, you know you are not going to like them because they are gay or they are shooting drugs, and you do not like that. So you do not like them. I do not think that is legitimate. You cannot be prejudiced in this profession. Some people are. But you should not be prejudiced in this profession because you have to deal with individuals as individuals.

Then the second thing is, that even if you do not like somebody, if they are very difficult and you have tried, there are certain things that you still must do. Certainly the minimum of giving them their medications and making sure they are clean and taking care of them in that way, those are all minimal things. But in addition, I think you must try to, what is the way to say this, give them another chance, or something like that. You have to keep trying. You have to keep talking to them. Now, if they will not talk to you or if they will not... You know, at some point, with some patients, it is you, it is not general. And then you can trade. You do not take care of that patient anymore. Somebody else does. And that should happen when it needs to happen.

But there are some people that are just difficult for everybody. Nobody wants to take care of them. They do not like anybody, and they are going to give everybody a hard time. Then, the important thing is to talk about it as a group and to figure out the most comprehensive strategy, if you will, that does not make that person be neglected. And whether that is little doses for everybody, or if some people who can take it more than others, there are different strategies. But you have got to figure it out, because the tendency with people like that is just to stay away from them.

Harden: Now, let us go to the other side of this coin. Many people outside the NIH, and some people inside the NIH, too, have differed in their opinions as to how the public health and research leadership should have responded. A number of people have said AIDS should have been treated more like syphilis and gonorrhea: the privacy right should not have been so rigidly respected, we should have done contact tracing, yet this was not the case. And the people who made that decision have been attacked. Have you seen or heard much of this, and do you have an opinion on it?

Grady: Certainly I have thought about it a lot, and I would guess, if I had to think through it a little bit, that my opinion may have changed over time. I think that it was issues like that that got me interested in ethics, to tell you the truth. Those are the kinds of discussions that we had early on, in addition to some that we have alluded to, that got me thinking about, how do you systematically approach some of these things and make sense out of them.

In response to that particular situation, in some respects it made sense that if there was a public health model that worked, we should apply it. But I think that there was enough, from my understanding even back then, of a question mark about whether it worked. First of all, do you just do something because it is been done, or do you stop and say, “Is this an analogous situation? Is the model that we have had in place before effective, and, therefore, should we apply it to this situation?” I think that there were enough questions, at least from the people that I heard discuss it, about the middle, primarily, that there was a door through which they were able to say, “Let us stop and think if we should not respect rights first, and maybe this is not the solution to protecting other people, because it will not work.”

I have written about and spoken about confidentiality in this context quite a bit, and I still am not absolutely crystal clear on what I think is the right way to go. But I do believe that, as it became clear that there were people at risk by not having the information that I had, or that somebody had, and you could identify who those people were, and you had tried everything you could to have them informed in the most logical way, which is by the person who is putting them at risk, and failed, then there are times when it is legitimate to inform them. But that is really a case-by-case rather than a blanket policy that you inform everybody that this person comes into contact with. The consequences of informing in a more lax way were so devastating, in some cases, that it did not seem to be supportive. Sure you could say public health is more than individual rights. In the abstract, I would probably agree with that. But in this particular instance of that, were you really going to protect public health? Questionable. And what were the consequences of overriding somebody’s rights in this regard? They were sometimes quite devastating, including violence. So, it is a dicey situation.

Hannaway: It is. Just to come back to the nursing before we move on to some of your larger activities in the larger world, let us say, in the article that Vicky referred to earlier, you wrote that the multiple medical problems suffered by AIDS patients required an average of 28 percent more nursing time than for non-AIDS patients. Could you tell us a little about how the Clinical Center addressed this demand for nursing time? We are interested a little more in the description of organizational changes or these sorts of things.

Grady: That number I quoted is from another study, I believe. It was not a study that was done here. But it was apparent in the beginning that the clinical care of patients at the end stage of HIV disease was quite complicated, most of the time because they had multiple infections ongoing, any one of which would have been complicated in terms of symptoms. And the treatments have evolved over time, so in the early days it was not so much that the treatments were complicated, because there were not so many. Now that is a big issue. But the time and energy that it took to take care of somebody adequately at an end-stage disease... Unlike today, we have mostly ambulatory patients. We see a lot of patients in the clinic. There are some that are terminally ill, but in the early days we saw a lot more, and many patients died here–not so much anymore–with AIDS. Multi-system failure is really what it was. And yet you see that in other diseases, but many times you see that in an intensive care unit and not on a regular unit. We were seeing multi-system failure after multi-system failure, and it was very labor-intensive.

Now you asked about organizational changes at the NIH. The NIH, the Clinical Center is unique in this way anyway. We have more personnel per bed than probably anywhere in the world. That is because research is also labor-intensive. So, although there was clearly a recognition that in order to take care of some of the patients from some of these protocols, we might need more nursing staff, we were already pretty well staffed. And so I think there were, there have been, minor modifications in terms of FTEs [full-time equivalents] in areas that have more HIV versus less, for nursing staff anyway. I do not know about anything else. Starting in 1986-ish, a lot of the effort, NIAID effort anyway, moved to outpatient, and there was a clinic built up over time, an HIV outpatient clinic, which I think is a wonderful model of how nursing care can and should be delivered. But in terms of really ramping up the number of nurses in the inpatient area, maybe a few, but not overwhelming changes, no.

Hannaway: What about space and location? Barbara Baird described having a cart on which she kept everything at the beginning, and how she was in other people’s offices on a temporary basis or that it was...

Grady: Because she did not have an office.

Hannaway: Yes. But I was wondering in terms of space allocation, these other sorts of debates that go on in hospitals, for one disease versus another and...

Grady: Well, I might be wrong, but I think that those... Barbara probably has a more poignant story than I do on this, because I had an office from the day I arrived, although it changed every six months and I was sometimes getting kicked out before I even knew I was in.

I think some of that came with new kinds of categories of positions. Barbara added responsibilities and so was put in a category, if that is the right word, different from one that had existed before. So there was not an office for her. I mean, there was not a title for her at first. Those things evolved over time. So she was in a unique situation. But there were not too many people like her. She was unique in the early days in terms of what she did, and she was identified as such because she was very capable, but also very interested, and so she took on this role and developed it and built something out of her original position as a staff nurse.

Harden: But were you the only clinical nurse specialist dealing with the AIDS, so to speak?

Grady: Yes, in the NIAID areas. There were people in NCI, but most of the clinical specialists in those days were inpatient, and the NCI had very few AIDS inpatients in the early to mid-1980s. They had some, but not a huge number. So there were some clinical specialists up there who dealt with...

Harden: So you were learning what to do and teaching other people what to do, and it was all happening all at once.

Grady: Mm-hmm.

Harden: Again, as Caroline was saying, before we make the transition into more recent times and new things you have done, I would just like to ask a few questions with regard to your personal life. You have already spoken about the difficulty when you were pregnant the first time. You have been pregnant three times, have you not?

Grady: Yes.

Harden: You have three children. And you nursed AIDS patients who were in the hospital the whole time. Do you ever feel like AIDS has taken over your entire life? We have heard that some people have experienced difficulties from friends and family who are not sure they really want to shake your hand. Have you experienced any of this?

Grady: Sure, I have. I have the added complication of having met and married [Dr. Anthony] Tony [Fauci] while he was here, which had nothing to do with AIDS at the time. I met him here over the bed of a patient who happened to be from Brazil. I was called in as a translator because this man wanted to go home, and they were afraid to let him go home because the guy had vasculitis. His vasculitis was not in great control. And so they said, “Could you come translate for Dr. Fauci?” whom I had not met, the inimitable Dr. Fauci everybody was afraid of. When he came in, I thought, “What are they so afraid of him for? He is not so scary.”

But it is actually a great story because Tony, in his very serious way that he can be, said, “Make sure that you do your dressings every day and sit with your leg up,” and I forget all the details. But I translated that to the patient, and the patient said, “You are kidding. I am so sick of being in this hospital. I am going to go home, I am going to dance all night, I am going to go to the beach, I am going to do this.” So I think to myself, “How am I going to do this?” So I turned around to Tony and said, “He said he would do exactly as you said.” I kept a straight face all the time.

But because of Tony and his work and his involvement, obviously, probably my life has more AIDS in it than it might have otherwise. I mean, if I had just worked here and had gone home to a situation that had nothing to do with it, I might have separated them in different ways than I have done. Although people used to ask us, “Is that all you ever talk about at home?” and the answer is no. In fact, I think we have been quite good about separating our life from our work, although probably much more for Tony than for me, his life is his work in most respects.

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