Our last speaker for the morning is Dr. Vukov. Okay. Again five minutes only and we do have written testimony that has been circulated this morning to the commissions so you should have that in front of you.

DR. VUKOV: I am Dr. Judith Vukov from Los Angeles and I am going to speak to you about the abandonment and neglect of my daughter and the misrepresentation by the research team in regards to my daughter, Abby.

I am not only a grieving mother but I am also a practicing psychiatrist. My daughter, Abby, at age 25 died four years ago this month. She died of aspirin toxicity and undue delay in diagnosis according to the coroner at a local ER 15 miles away from the state hospital and the research unit.

Abby died because she was placed at risk as a research subject. Even when her condition became life threatening and she was neglected the research records reveal that there was no attempt to intervene either medically or psychiatrically.

Later an investigation by the California Health Department revealed: (1) that there were no nurses or doctors there for the last 18 days of Abby's life. (2) that the research team misrepresented unit 45 as an acute care unit when, in fact, it was only an immediate care facility also known as a group home. (3) Abby had been administered Tylenol 13 years by the nonprofessional staff during the last week of her life and there were no physician notes indicating why or what the reasoning was, or why nothing else was given. There was also no treatment plan for the 54 days that she was on the unit.

I might also add that on the night that Abby lay dying in the emergency room the night staff recorded her as alive and well on their unit.

Abby's case was pivotal in the L.A. County decision to bar all conservatees from participation in research of any kind in Los Angeles County or apparently in any other county in California.

Later from information received from a FOIA request it became apparent that the research team also adjusted her diagnosis to fit the protocol and ignored her medical history. If they had complied with the inclusion and exclusion requirements she would never have been in the research.

(1) to be included in the research one must have a clear cut diagnosis of schizophrenia. The UCLA team ignored their own findings of bipolar disorder with organic features and placed her in the research. They also ignored all the previous diagnoses by previous doctors, none of which was schizophrenia.

(2) the exclusion criteria said that there should be no history of neurologic conditions. Abby had Tourette's Syndrome. She had Siddenham's Chorea. She had also had been the victim of two assaults in the previous month in the state hospital and had two head injuries.

When Abby's condition deteriorated and dramatically changed for the worse by documented by the very sparse records instead of reverting to standard practices they had promised in their informed consent the researchers only utilized --

(Technical difficulties.)

DR. CHILDRESS: I am very sorry.

DR. VUKOV: Can you hear me? Is it still on? Is it on?

DR. CHILDRESS: The recording is working.

DR. VUKOV: Okay. I was going to say that the researchers utilized behavior modification and shunning, a practice that was outlawed by the L.A. County Patient's Rights Division many years before and which I cannot use as a private psychiatrist.

The attitude of the UCLA team to my daughter's death and the findings of the investigations can be summed up in a statement by the head of the team in a fact finding event.

When asked if he kept records about Abby's death he said, "If I saved all the material that came across my desk I would not be able to sit down." Thus the findings about my daughter's death only filled his wastebasket.

I, too, once believed that research would turn Abby's life around. It turned my life around 40 years ago in a study with the endoscopy tube and I might say the researcher still knows me and still knows my name 40 years later.

I think that attitude in this country has changed and that care and consideration. From what I now know I use every new drug with trepidation knowing that was uncovered in the investigation of Abby's tragedy and that of others is systemic and pervades all levels of the research community.

To sum up my feelings and those of others the L.A. Patient's Rights said to me that if this had happened in a private hospital they would have pulled their license and shut them down. I was shocked.

The recommendations I would like to make is that there is an autonomous doctor outside of the research community, an internist. Apparently researchers do not believe that these people get physically ill from the psychiatric medications or whatever medications they are being administered. I do not think the psychiatrists or even the research psychiatrist today knows enough about internal medicine anymore to protect the patient or cares enough and I also do not think the nurses know enough. I think there needs to be an independent treatment team watching out for the welfare of the patients.

I also think that there should be sanctions for the violations of state and federal law. I think that once this happens anywhere in this country NIH should stop all funding of all research going to that institution. I really resent the fact that these people are still being funded with million plus grants every year since Abby died.

You say -- somebody here mentioned to go to OPRR. I wrote to OPRR a year-and-a-half ago. I was just informed by them that the woman who was supposed to be investigating left her position so it still has not been investigated.

You also said to talk to your attorney general. The attorney general protects the employees of the state. They do not protect the patients. In our case the attorney general supplied the legal counsel for the doctors. You cannot go to the attorney general. The attorney generals are there for the state only and their employees, not the rest of us. We have to go to the federal government.

Thank you.

DR. CHILDRESS: Thank you. Could you remain just a moment and let me see if there are any comments?

Thank you very much for sharing this very moving story.

I thank everyone who has presented today including those who presented written testimony only. We are glad to have both when it can be made available.

These stories and in many cases the explicit recommendations that follow the stories and in other cases the implicit ones will be very important for us as we deliberate our report and our recommendations of possible guidelines and the like. So we are grateful to all of you who took off time to join us today and bring your stories before us.