Office of NIH History
In Their Own Words: NIH Researchers Recall the Early Years of AIDS
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Harden: Do you know about how many AIDS patients are in the Clinical Center now, in 1993?

Baird: Well, besides those in the Clinical Center, you also have people who come in once a month, and people who come in once a week.

Harden: How about in-patients?

Baird: That would be a very small number. I would say there would not be more than five in-patients. The in-patient population is very small. Among the out-patients, you have the pediatric cases of Dr. Phil [Philip] Pizzo. You have the NCI's adult patients, and then you have the NIAID patients. Also, the Division of Transfusion Medicine is doing some work [on AIDS]. People ask for the number of AIDS patients frequently, but it is a hard number to get hold of unless you can be more specific. If you want to know how many people have been seen here from once up to ten times, you can get that number. Epidemiology probably would have it. In the past, for the longest time, I kept a list of those numbers. When a person came in with AIDS, he or she was given an NIH number. I kept them on a list, but once it went over a thousand I could not continue it. That was another job I had, tracking all the patients and reporting them to the Centers for Disease Control. When the numbers became large, Epidemiology took over the list and hired a nurse to work on it.

Rodrigues: I went through Grateful Med and pulled out articles using some term having to do with nursing, AIDS, and research. I was surprised to find quite a few articles in nursing journals still dealing with the topics of the stigmatized patient, homophobia, and so on. Were these issues ever a big problem for the Clinical Center, in terms of finding nurses who wanted to be part of this program?

Baird: At the NIH, it actually was not. There were more nurses who volunteered than were needed. It was like the hospitals in San Francisco. There were more nurses volunteering to take care of patients than those who did not want to do it. Geographically, that has not always been the case around the country. In New York, there were nurses being forced to care for patients, and the same thing with doctors, too. There were also problems in the Midwest, the Southwest, and the South. Because of the fear, there were legal cases in which nurses were suing because their employer was forcing them to take care of AIDS patients. They thought they were at risk, or they thought they might be pregnant, or their husbands and families objected. It is not as much of a problem now. I think it is ebbing, but it is still a problem in some places.

There are ethical issues involved: I am a health care professional, but can I choose to whom I deliver my care, or don't I have a choice? Does the Hippocratic Oath mean that I have to care for everyone? The Constitution says that we are all created equal, and, in fact, it is illegal if I do not care for minorities. Where does AIDS fit into this? Is having AIDS the same as being a minority? Now that AIDS is known to be infectious, what are the ramifications of that? It is very difficult. But it is nowhere near the problem that it used to be.

When this epidemic first appeared, I was hired by a firm that does education for nurses. They developed a one-day program and sent me around the country on my days off. I would take three or four days of annual leave. I would go to various cities, and the company would have a conference set up at the local hotel. I would talk to nurses, tell them how to deliver care to AIDS patients, and describe what to expect. Very early on, I could hear from their questions that people were afraid, that they were resentful. They did not want to have any part of caring for AIDS patients.

Harden: What were they afraid of? Were they homophobic, or were they afraid of a disease that they did not know?

Baird: They were afraid of what they did not know. It was also interesting that many times the nurses were willing to care for the patients. But their husbands were not willing for them to care for the patients. Many husbands had much to say about who their wife was going to care for, because they were both working. Many nurses said to me, “I don't mind doing this, but my husband doesn't want me to because he doesn't want me to bring this home.” There were a number of those comments but there have not been so many recently. There is a little here and there, but it is nowhere near the same. It was the fear. With the husbands, it was clearly fear because they did not know what the nurses would be involved in so they could not really make an intelligent decision about it. Does that answer your question?

Rodrigues: Yes, it certainly does. I was surprised, because until I looked at some of the more recent literature, I did not realize that these views were still circulating.

Baird: My brother lives in Oklahoma, and up until now, you can talk to people there and they will say: “I wouldn't take care of any AIDS patients.” There are pockets in this country where people would say that they would not take care of AIDS patients. Then, of course, the Moral Majority thinks that AIDS is the result of God's will. There are fanatical religious groups that account for many patients coming in with a lot of guilt associated with their disease. They feel that they are being punished for something they did wrong.

Rodrigues: I assume that the vast majority of the patients that you have had are gay males, although you did mention the pediatric cases, and I am sure there are hemophiliac cases as well. How would you describe the gay male AIDS patients as a patient population compared to, let us say, the cancer patients? Do they tend to be compliant with the different research protocols or, with all the political activism, is there a certain amount of hostility on their part?

Baird: It is all on a continuum. You have people at both ends, and then you have people in the middle. With AIDS, there tends to be a little more of the activist mentality, and it is unfortunate. If you compare the AIDS patients to the cancer population, you would see that they are different. However, if you interact with someone, if you can get them to put their activist behavior aside, and interact with you on a person to person level, then it is a positive interaction. Many times men will come in and I know that they are from ACT-UP or some other group. I will say to them, “I am not here for your political issues, I am here to take care of you. Let us see what we can do, what study we can get you on, how we can get this study done.” Much of the time you can divest them of that anger and hostility. If you can, then you can work with them a little better, so that is one difference.

As a group, because they are not married with families, gay males have more time available. I think that is why they are able to do more activist things. Cancer patients are usually involved with their families, and they are often taking care of their spouses and their children. Many of the gay men may have significant others, and may be part of a couple, but they most often will not have a large family unit or minor children for whom they are responsible. I say this only as a general rule, because there some gay males who do have such responsibilities.

Harden: The NIH intramural program, has, on occasion, gone above and beyond what is required. In one personal experience I called the nurse in charge of a Cryptosporidium study on behalf of a friend whose nephew had AIDS. She arranged to talk with the family and also for a consult for his attending physician with the doctor in charge of that study. I am not sure that it made much difference to the patient, but it certainly made a lot of difference to that family, feeling that the leading federal government center on AIDS cared about them.

Baird: Often people will call, and they do not understand the mission of the NIH. They think that we are here to do patient care like most hospitals. Other times they call from all over the country because we have a 1-800 number. What they want to hear is that they are getting good medical care. They want to be reinforced in that way. When I say, “What is your disease? What treatment are you getting?” and they tell me what they are getting, I can tell them whether it is standard medical practice. I do not tell them whether their doctor is good or not because I do not know. If I tell them that they are getting standard medical care, that it is appropriate, and everything is fine, then they are satisfied.

Harden: Obviously, to watch a young person suffer terribly and die is terrifying for a family. Just to have somebody assure them that they are doing everything that they can is comforting.

Baird: Yes, the big fear is, “Am I doing everything I can?” They will call around to see if there is anything that they do not know about. I assure them that there is not. The other thing is the guilt that the parents carry because many times they do not find out about their son's homosexuality until late in the course of the disease. Many parents feel that they have done something to cause their child to become gay, or they fear that if only they had not done something else, their child would not be gay and thus would not be dying of AIDS. The parent is carrying this burden on his or her shoulders, feeling that they are killing their child. According to their logic, they caused it all. If the child is an adult, if there is some dementia involved and the patient cannot think or talk, then, that is even worse for the parents because they have to watch the mental deterioration of their child. Having your child predecease you must be one of the worst things that a person can go through.

Harden: Are there any other topics that you want to cover that we have not?

Baird: I am sure I will think of a thousand things as I drive home. There is one topic now. I have encountered some suspicion about why I was interested in AIDS. Some people assumed that there must have been a reason why I was doing this. Was my ex-husband gay? Was this the reason that I was divorced, a mother of three sons, and I was interested in AIDS? Many people thought that one of my sons must be gay, but all three boys are straight. The answer, of course, was that the AIDS work offered an opportunity at a particular time. I just fell into it. I was right there, and I wanted to take advantage of the opportunity to learn about a new disease. For the first two or three years of my AIDS work, however, while my sons were in high school–at least for the two younger ones–it was a very sensitive issue, especially if I brought home papers from work that said AIDS on them.

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