Office of NIH History
In Their Own Words: NIH Researchers Recall the Early Years of AIDS
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Harden: He said to us, when we interviewed him, that both of you had dedicated your life to this; it was here, you were both involved with it. So you are bound to share these feelings. But I think it is very hard for any NIH couple–I am a part of an NIH couple–to get away from it all. Yet you do live in a larger community, and you have children–not only have them, but they are going to school, and you are dealing with all this. Have they come home with any stories about...wondering about their parents working with AIDS, this kind of thing?

Grady: Not so many stories, but my eldest, who is only 10, has asked a lot of questions over the years, such as “How do you get AIDS? What is it? What are you trying to do, Daddy? What do you do, Mom?” those kind of questions. And only recently, actually, she has had more people at school ask her, because they see Tony on television and they put her together with him. But I do not think the younger kids have much of a sense of it at all yet. Yes, they will over time.

Hannaway: I agree. When your father is on the “Jim Lehrer Hour,” as he was on Tuesday night, was it... And “CBS News” on Monday.

Grady: Right.

Hannaway: What we would like to turn to now is some of your activities on commissions and so on beyond the NIH. First, would you discuss some of your activities as a staff member on the Presidential Commission on the HIV epidemic? And how would you assess the contributions of this Commission?

Grady: I was called at home one afternoon–I think it was a Sunday–by the head of the Nursing Department, who said she had received a call from somebody downtown, at DHHS [Department of Health and Human Services], asking about a detail, whether I could be detailed down to work at the Commission. I thought, “Gee, that is intriguing. I wonder what that is all about.” So I said, “Sure, I’ll try that,” thinking it would be very short term. And it was short term, but it ended up being longer than the original arrangement was.

It was an immersion in a whole different way of looking at this problem that I had not experienced before. I mean, some of the things that were really funny, in a way. When I first came, there was a physician there, and he and I worked together, and our area was to look at delivery of care, some of the more specific medical care issues. At one point they asked me, “Find out what you need to know about hospice care for AIDS patients.” So what I was used to, in writing papers and articles, is that you do a review of the literature and you put it all together, and you end up with a 20-page or so package of information. And I was told no. I mean, “You cannot review the literature. You find out what you can. By tomorrow, I want a one, at most, one-and-a-half, page synopsis of hospice care for AIDS patients,” which had to start with “what is a hospice” and end with “how much money are we spending in the United States on hospice care for AIDS patients?” and every other problem in between.

Hannaway: Go off the page.

Grady: That was a culture shock for me. But I quickly discovered that many of the people that worked at the Commission, staff members, had been congressional aides, and that is the way they worked. They deal with the problem, a comprehensive problem, boil it down into an understandable synopsis that hopefully covers the important things that somebody who has very little time can read and understand the important issues about. So I learned how to do that very quickly, and then we did lots of those over the time. After a while...

Actually, there were several other people. When I first went, there was another nurse from the Navy, and there was a social worker–from HCFA [Health Care Finance Administration], I believe, or maybe HRSA [Health Resources and Services Administration]–also detailed there, the two of them, the three of us. And then this physician was a Hopkins physician. And after maybe a month or two at the most, all of them left, and it was just me in terms of the health care aspects of this issue.

There were some very well-educated members of the staff in terms of some of the issues, but their backgrounds were primarily congressional rather than health care.

But, again, it opened up not only the world of how these things work, like commissions and Congress, but a whole other dimension in terms of how you look at some of these issues. I was used to thinking about how you take care of an individual and maybe how you put together a sense of, after having taken care of 100 individuals, what works and what does not, what is important and what is not. But now I am coming at it from the angle of do these people need hospice care, is hospice appropriate, who is going to pay for it, how do you justify it, and what do we have to do to strengthen what exists in terms of hospice organizations to be able to provide it, and what are the barriers? That was a really different angle on some of these situations, but immensely interesting.

I think you had asked, does the Commission make a difference? I do think they did. They were beleaguered by a lot of early political battles, and political battles right to the end, some members who did not agree with the final recommendations. But they took on the topic in a very comprehensive way and, I think, came out with some very reasonable recommendations about next steps. People have criticized it since. You know, maybe they did not go far enough or maybe nobody paid enough attention to their recommendations. There is probably truth to all of that. But they did do a lot, and a lot of people, in subsequent years, relied on both their summaries and their recommendations in terms of where to go.

Hannaway: So another activity you had at about the same time was the Task Force on AIDS of the D.C. Board of Education.

Grady: Yes. That was a very interesting process also. And through both of these experiences, I met a number of people, some of whom have continued to be influential in this area or in other areas.

Hannaway: How did you get into the latter? You were not detailed to that.

Grady: No, I was not detailed. I do not remember, actually, how I got there. But it was, again, they needed somebody, and somebody said, “Get her to do it.”

Hannaway: “Why don’t you ask her?”

Grady: I did it. I think it was through here. I live in D.C., but I do not think it was a D.C. connection. But perhaps they thought it was a good idea because I was also a resident of D.C. And it was definitely because...the nursing part was what they were interested in, in my opinion.

Hannaway: But it was not an NIH outreach effort.

Grady: No, I do not believe it was. I do not remember. But I was the only nurse in that group.

Harden: Were you involved in addressing the issue of distribution of condoms in the schools, or sex education, or all of that?

Grady: No. The major issues were, what do you do with children or faculty or staff who have HIV? Do you let them stay there? Who do you tell? How many people have to know? What kinds of precautions should you put into the local school? Do you give everybody gloves? Do you tell them only to use gloves with this kid or do you use gloves with everybody? Those kinds of issues are what we dealt with.

And it was very interesting because it was not just kids in school. The D.C. Board of Education also has some residential facilities for kids with chronic problems and mental retardation that have wide–not wide, but prevalent levels of hepatitis and other things, so that... And kids that needed day care and hands-on care and... So it was more complicated than just kids in school. But those were the issues. We did not deal with condoms or sex education at all on that task force.

Harden: Now, from January 1987 to September 1987, you served on the Intragovernmental Task Force on AIDS Health Care Delivery for the Public Health Service. Tell us what that group did.

Grady: What was his name? There was a guy, a very good guy. I cannot think of his name now. He was from Utah. He is a physician. He came to Washington as a member of Orrin Hatch’s staff, and then was recruited as the director of HRSA around that time. He put together this task force, and it was members of all the federal government agencies.

We dealt with a lot of different issues, but I think some of them were system-wide, what the government, what the different agencies, should do or should have as priorities in terms of this issue.

And I had not thought about that report in a long time, and I could not probably even tell you what was in it, or I would have it on my shelf somewhere.

Harden: You were coming from the NIH, from a research point of view. But you are also a nurse, so you know a lot about health care delivery. I was really interested in whether this gave you a unique perspective in this particular body, and if you recall whether the other PHS [Public Health Service] representatives might have come at it from a different way.

Grady: Absolutely, absolutely. I do not know for sure, but I always thought in those days that what they were after, from my perspective, was my nursing perspective rather than the research perspective. But I could be wrong about that. But that is always the way I approached it.

Harden: How was that group, if you can recall, different from the Public Health Service AIDS Work Group on Patient Care and Health Care Delivery, which you were also on at the same time?

Grady: The Intragovernmental Task Force was interested in a whole range of issues, and if I recall correctly, from the perspective of what should the respective agencies be doing. Whereas the other task force was more interested in specific issues related to patient care, which were more generic in some respects, but crossed agencies in other ways and had nothing to do with some agencies. That was a group that did not go as far in terms of a product. The Intragovernmental Task Force came out with a report. It was a time-limited entity which had a goal and a report, and then ended. The other one was supposed to be ongoing, but then fizzled out after a while. And we never had a product, so to speak. We just had ongoing discussions. I think perhaps it got incorporated into some other committees. I do not know what happened to it, but it fizzled at some point.

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