Our next speaker is Ms. Arlis Neason.

Is Ms. Neason here?

MS. NEASON: Yes, I am.

DR. CHILDRESS: Okay.

MS. NEASON: Good morning. My name is Arlis Neason and I am here to introduce my son, Jeffrey Neason, who is going to --

MR. NEASON: I am going to turn 15 this September 29th.

MS. NEASON: Jeffrey was born premature weighing 2 lbs, 15 ozs. He remained in a pediatric intensive care unit for nearly seven months before he was discharged home weighing 5 lbs, 4 ozs. Twenty-five diagnoses are listed on his discharge summary but failure to thrive and a chronic diarrhea prevailed throughout his childhood even to the present day. Exploratory bowel surgery was performed when he was only four months old. There was a time when he was not expected to live.

As a result of his debilitating symptoms his education and his social interactions were compromised. For years his physicians diagnosed malabsorption syndrome. At age 8 his medical records discussed the possibility of Crohn's Disease. Because of his chronic diarrhea with associated weakness and failure to thrive my husband and I brought Jeffrey to UCLA Medical Center seeking medical treatment.

His first appointed was during January 1992 at which time he was evaluated for three days. We all returned to UCLA during February so that Jeffrey could be further evaluated. After several more days of testing an accusation of suspected child abuse was made by Jeffrey's pediatric gastroenterologist. We were accused of poisoning Jeffrey with laxatives. Precisely at the same time the false allegation of child abuse was made Crohn's Disease was also diagnosed by this same accusing doctor.

Jeffrey was taken immediately from us and admitted to the pediatric intensive care unit on February 26th. He was labeled a victim of Munchausen Syndrome by Proxy. Today we know that Jeffrey was held without legal authority when he was taken from us.

The first hearing was in California on April 6th, 1992, related to custody. Our Nevada residence was searched looking for laxatives but none were found. More than three years passed before our family was reunited on May 1st, 1995. A University of Chicago pediatric gastroenterologist and four Mayo Clinic physicians all refuted UCLA's child abuse allegations. We were triumphant at trial.

Jeffrey remained hospitalized at UCLA for over seven months until he was discharged to an Illinois foster home on October 4, '92. Throughout his hospitalization our visits were monitored. During those seven months he was admitted to the Neuropsychiatric Institute on April 21st due to the false diagnosis that Jeffrey was a victim of Munchausen.

Teaching funds were approved to support him during his MPI hospitalization. The psychiatrist who diagnosed Munchausen Syndrome by Proxy happened to be on tap to be an expert for the American Psychiatric Association involving Munchausen. Despite relentless diarrhea Jeffrey remained in the Neuropsychiatric Institute. His health deteriorated so severely that an emergency admission back into the medical center was necessary. A court order was granted to accomplish the transfer on July 30th. It is what happened to Jeffrey after he was transferred back into the medical center that is the focus of this report.

Beginning July 30th cyclosporin was started intravenously. Cyclosporin is a medicine which in 1983 has received FDA approval with specific labels for use. It is used to prevent organ transplant rejection.

Questions come to mind as to why Jeffrey would become so seriously ill while hospitalized at a major medical center. The first encounter with serious illness at UCLA occurred shortly after his admission. He suffered an electrolyte imbalance after his regular medications were stopped and his previous gastroenterologist's orders to avoid dairy products were ignored.

His second encounter with serious illness was during his hospitalization in the Neuropsychiatric Institute. Although he was taking numerous medications for his bowel disease the psychiatrist, the one aiming to be the expert, was his primary physician. Did his treatment play a role in his declining health? Was Jeffrey at risk the moment our parental rights to make informed decisions regarding his health care were temporarily taken from us? Did that legal situation open the door for the accusing physicians to benefit from research related to the "treatment" of Jeffrey's unique and challenging medical problems?

On the surface the use of cyclosporin appears to be for treatment but was it used solely for treatment or was it used in part for research? Do medical articles written in 1994 by the accusing physician and another treating physician discussing the use of cyclosporin for their pediatric patients afflicted with Crohn's disease prove that their intent in using this drug was at least partly for research?

Since cyclosporin's initial FDA approval in 1983 it has still not been approved for the treatment of inflammatory bowel disease. The literature is filled with medical risks that discuss the serious risk factors associated with its use. Significant toxicity including renal dysfunction and super infections can result from the use of cyclosporin.

The accusing doctor and another pediatric gastroenterologist treating physician state in their article published in 1994 that cyclosporin benefits less than 25 percent of the cases of ulcerative colitis or Crohn's disease. Did those doctors misuse our legal system to obtain those statistics? Was Jeffrey part of that research?

Today Jeffrey carries three diagnoses. The University of Chicago diagnosed Crohn's disease during November '96. Although UCLA initially diagnosed Crohn's disease during February '92 at the latter part of Jeffrey's seven month hospitalization his physicians committed only to his symptoms being consistent with Crohn's disease.

Jeffrey also has asthma the University of Chicago diagnosed and is treating it.

A Mayo Clinic geneticist diagnosed Jeffrey with a rare genetic condition which is described as a variant of the Johanson Blizzard Syndrome.

Given Jeffrey's unique and complex medical status was enough known in 1992 about how cyclosporin would affect Jeffrey's future to warrant its use? Was Jeffrey really a victim of research which was masqueraded as treatment? In trying to answer that question only more questions come to mind.

Why was Jeffrey's NPI hospitalization, which lasted for over three months, covered by teaching funds? But most puzzling is why didn't UCLA provide Jeffrey's insurance carrier with complete medical records so that their physicians could review those records? Also the entire claim for Jeffrey's seven-month hospitalization was denied in October 1992 because the insurance carrier was not given the requested records. To this date the claim remains denied.

In legal situations where parental rights have been temporarily taken away is research disguised as treatment being conducted on innocent precious children?

Thank you.

DR. CHILDRESS: Ms. Neason, the commission thanks you and also Jeffrey for sharing your story with us today.

MS. NEASON: Thank you.

DR. CHILDRESS: Alex?

MR. CAPRON: I would like you just to clarify this term that you are using, "teaching funds." By that do you mean simply UCLA funds that are not reimburse from outside?

MS. NEASON: All I can tell you is there is a medical record written by the accusing psychiatrist which states that he went to the Director of the Neuropsychiatric Institute requesting the use of teaching funds for Jeffrey's care to support him and it was granted.

MR. CAPRON: Thank you.

DR. CHILDRESS: Thank you very much for joining us today and you, too, Jeffrey.

MR. NEASON: You are welcome.