MR. M. BROWNSTEIN: I am Mel Brownstein, Andy's father, and I want to address just one point and that is confidentiality. Whether we speak of research or treatment when dealing with mental illness we are dealing with the whole family, that is the impact of the illness on the family as a whole requires -- we reexamine some of the meanings and the function of confidentiality.

For the entire 13 months that Andy was at NIMH no one, neither the doctors or the social workers or the nurses, ever contacted either my wife or myself to share how Andy was faring. No one opened the door to acknowledge that we were concerned and that we were part of the illness. If the three or four extended furloughs that Andy got, and they would receive furlough to go home for 14 or more days, our son came home and no one contacted us after that for a debriefing. How did it go? How did he fair? How did you respond? How was his interaction with family, et cetera? Not one time. And there was no support for that.

Nor have they made any effort after discharge to follow up with the patient or the family. No one from that institution, from that ward, has ever called Andy or us to say, "How is he doing? What is happening?" To me this is a total disregard for either the well-being or the progress, or the state of the patient, or the family.

Confidentiality implies -- and I was a professor of social work for many years so I dealt with this. I tried to teach it. But confidentiality implies that the treater will not misuse the information gleamed from the treatee, from the person being treated. That is what is shared is not grist for a rumor mill. But it does not mean that the treater cloaks him or herself in silence or distance from intentionally -- from intimately concerned parties who, in fact, play a role in the care and concern of a patient long after the treater is gone.

Andy is home now for almost a year-and-a-half, two years. We are the caretaker. We are concerned. We see the depths of the depression my son is going through. We see that this is a life unborn.

These people who have taken his fluid have never made any contact or any effort to reach him or us to say what is happening. What is the product of what we have done? This silence and distance seriously negate any accountability on the part of all those who are involved. No one should have that kind of power. And particularly where there is such vulnerability that control has been ceded to them, where trust is a prerequisite, or prerequisite for a positive outcome of this illness.

I thank you for the opportunity of talking to you. I appreciate what research is but these people were damn cruel.

DR. CHILDRESS: Are there questions to be directed to -- and Mrs. Brownstein, too, will be available for questions. So are there questions directed to the Brownsteins?

MS. CHARO: Just, Jim, one.

MR. CAPRON: Use your mike, please.

MS. CHARO: Yes. Can you help me understand why you went into this protocol to begin with? What led you to do it and what you expected? And in the course of it as you discovered that it was perhaps different from your expectations whether you ever considered leaving and, if so, how that went?

MR. A. BROWNSTEIN: It is a complicated question and the answers are very complicated. I went in because I was really sick and I was -- meds just were not working and I had -- when I entered NIH -- I began to be sick in junior high. By '81 I was 21 and I was finally diagnosed. The doctor said as a teenager this is very difficult to make a diagnosis. The first hospitalization was in '81. Meds just did not work. I was on lithium for eight, or nine, or ten years. It just did not work. A whole variety. You go through the list and I was on everything in combinations for lengthy trials, retrials, so on.

I got a good doc at Temple University. He was the chief resident. He was terrific. I loved him. The best doc I ever had.

I got to a point after -- I guess it was almost two years of working with him when he just said, "This is just beyond me. We have tried, you know, and my own feelings deep in my heart is that there is nothing more I could do. I would be lying to you. There is nothing more that I know how to deal with."

At that point, you know, looking through books and magazines I discovered the name NIH. I had never heard of it. I talked to him about it and he said, "Good idea." I made contact. The papers were faxed. All the records were faxed. I was invited for the interview. That was the reason that I came is because I just ran out of choices and I was desperate. I mean throughout all that I just did not give up. I was close but I did not give up and we came here.

I do not understand what research is. I am not a scientist. I am a layperson. I did not understand what it meant. When you finally get here and you are here for a period of time and you begin to understand that all of this is blinded, you do not know what you are on, the nurses do not know what you are on, the doctors do not know what you are on, everything is in code number, you do not know when you are on something, when you are off something.

And at some point you begin to understand that this blind breaking which they kind of held in front of you like a carrot, it was the important day when we would find everything out, at some point you realize you cannot leave. You cannot leave because until you know that a protocol is completed, which is the blind breaking, if you are desperate for help you cannot leave. You have got to wait until the end.

MS. CHARO: Thank you.

DR. CHILDRESS: Would one of you like to add something to that and then we will have to go to our last speaker of the morning.

MRS. BROWNSTEIN: Unless there are other questions I would just say that --

DR. CHILDRESS: Could you go to the microphone?

MRS. BROWNSTEIN: Good morning. I am so glad you are attending to this problem. You are facing a parent who has for many years been desperate trying to help a child who obviously is articulate, capable, in control, a socially very acceptable person, who tried very desperately to make his life better. I cannot tell you how many times I have scoured the house since he was in junior high school for items which might indicate that he is trying to take his life because his bottom line is suicidal ideations. He prepares.

So our first episode was to see a collection of pills and we intervened with that. We found a gun, which we intervened. Now I look for items that might indicate that -- the cars also will be locked so that he cannot run the car. All of those things. So we live with that. We live with a constant condition of trying to be human and sociable and a terrible fear, my feet get cold, the terrible fear that we will find our son dead.

So these -- mental illness we have learned is very individual and each individual needs to be looked at as a whole with the way they function for themselves, within society as a whole, as they develop as people, or sociable. And in this case you know our bottom line.

Now I am a high school science teacher, educator, and know about research because I teach research. I supervise the school's science fairs and set up the protocols for students and I am very hardnosed about things like controls and setting conditions under well controlled conditions. This is what I would like to address this morning: I have no complaint with some of the research design at least as I saw it and I became -- you know, was able to understand it in terms of the scientific product. It is very difficult to establish controls on a human being. It is not a tomato plant and it is not a guppy. This is a person who interacts with society in a particular way.

I will just be brief, okay, because I am getting signs that three minutes is too short to tell the whole story. What I would suggest in all the treatment at NIMH, which is right here, is that there be established, first of all, an ombudsman who can be objective and outside of the research in terms of listening to the patient so that this is definitely a part of the research design.

And there is something else there because there were times when just from needle sticks they were doing for procedures Andy developed phlebitis and the nurse who is very objective and does not interfere in research either said, "Well, he has a scratch on his arm," but he did not. This was a life-threatening problem and it took a doctor who knew how nurses react and how dispassionate they are to sit with him all day and just put ice on and avoid the terrible consequences of a phlebitis.

So, first of all -- you know, so this dispassionate attitude is one that needs attention, specially prepared nurses be there, an ombudsman be there, and that the people have a way of informing society around there that they are especially ill and under special treatment.

He was home one time visiting and he had an episode. I do not know whether it was panic or whatever. But my husband and I did not know what to do. We were afraid to call an ambulance unit because they would not want to do. They had no indication and they would possibly give him something that would counter, you know, counterindicate what medications he was on and whatnot. We had no recourse.

Well, why can't this people have beepers? Access to an emergency so that somebody knows what is happening to them. Somebody possibly who knows what to do. I mean this should be a relatively simple safeguard for those people who are in blinded studies.

Now I could go on and on but those are practical proposals for taking care of the blinded nature of these studies and confidentiality, and their vulnerability in terms of not being able to tell anybody what is happening, or believed because they are psychiatric patients. People say, "Oh, they are crazy," and they do not listen.

DR. CHILDRESS: Thank you. We will look forward again to receiving the written report which will flush some of this out and also any further recommendations you might have.