A Father's Story
by Bruce Kasper
(page 4 of 4)
In an almost identical tragedy in New York in 1995, DiPaolo v. New York Blood Center, the plaintiff won a multi-million dollar judgment. In March of 1999 hemophiliacs were awarded $56 million in a case where the verdict was unanimous a jury found the defendants guilty of fraud for concealing information.
Anique's mother and I separated in July 1983. October of that year, when AIDS first surfaced at Cedars, provided an opportunity for reconciliation. Whatever the differences be that led to the divorce, they were not so great that I would have left Nicole with a dying child. That is not what I am about. Had I known the truth, the facts, I can say with all certainty, I would have stayed married.
More unfortunately, in 1998 Nicole was forced to file for bankruptcy. This tragedy not only took its toll emotionally, but financially as well.
In deposition, my wife, Mara, who has endured hell during this ordeal, testified that had she known the truth, she probably wouldn't have married me, and didn't know if she still loved me! That's a helluva thing to have to live with!
Failure of physicians to notify patients of conditions relating to their health is a clear violation of the prevailing professional standard of physician care. Why then, were administrative officials, instead of physicians, making decisions not to disclose and thus making life and death decisions? What gives anyone the right to withhold vital information people need to make decisions regarding their lives and those of their loved ones, particularly innocent children? Certainly not health care providers, and most certainly, not Cedars-Sinai Medical Center, LADHS, or CDC.
On September 16, 1999, along with the mother of a surviving child also infected at Cedars I went to Washington, D.C. and met with aides to Senators Feinstein and Boxer, and Rep. Steven Kuykendall. We asked for federal assistance in two specific areas.
First, is legislation that would make it mandatory for health care providers to immediately notify the parents of a minor child of any information they come into possession of that relates to the health and well being of the child.
Second, is for a congressional sub-committee or Justice Department investigation. How do you spend $2,000,000 of federal funds on a multi-year study, the results of which were published in 1995 without leaving a paper trail? Not one entity can produce a single document! Not even a letter notifying any of the families of the very children this study was devised and created to help!
Since the county's response for documents is "they were destroyed", I specifically asked in writing under the Freedom of Information Act (FOIA) what federal, state or local law, statute or ordinance permitted the destruction of these documents? And, under whose authority and when were the documents destroyed? Again, nothing!
On Monday, October 24, 1999, I spoke with Fred Guido, chief of staff to Supervisor Don Knabe about this issue. Mr. Guido specifically told me County Counsel is now involved, and it is unlikely they will provide any documents.
December 7, 1999 I spoke before the full Board of Supervisors of Los Angeles County requesting the reply and response by the LADHS to the letters from Cedars. Just prior to making my remarks I was approached by Fred Leaf, Chief of Staff for the LADHS, and subsequently met with him and other officials on February 11, 2000.
The meeting was held in the office of John Schunhoff, Chief of Operations, Public Health Programs. Also in attendance were Rick Velasquez, health aide to Supervisor Don Knabe, and Fred Leaf, who arrived later.
Probably the most telling portion of the meeting is when I asked pointedly, "If this had been any another sexually transmitted disease such as syphilis, gonorrhea or Chlamydia, wouldn't the Health Dept. have a duty and statutory responsibility to track back the individuals, and notify all potential partners and recipients?"
The response was "Yes," which Fred Leaf personally reiterated at a meeting the following month. When I pressed the issue, Leaf admitted the county was indeed "negligent
Schunhoff added that this "was a period of highly inter-active communication" between the county and health care providers including blood banks. Schunhoff went on to say that procedure called for the LADHS to contact blood banks when they were made aware of donors who were identified as having AIDS, or donors in case of post-transfusion related AIDS. My reply was simple. If this was "a period of highly inter-active communication," there would have to be some documentation; volumes given the nature of a newly discovered sexually transmitted disease of epidemic proportions!
However, nothing substantive came from either of these two meetings. The implication I came away with was "Yes, we were grossly negligent in our failure to notify the families, but since we destroyed all the documents, prove it!"
In addition to the 114 infants, there certainly are adults who acquired AIDS from HIV infected blood transfusions from Cedars Sinai's own blood bank. And, I know of another child born in March of 1987, well after the first effective test for HIV was approved also afflicted. What is the total of those infected? Do you think LADHS has knowledge, but is not revealing anything?
I have spoken with, and have the full unequivocal support of some of the world's foremost AIDS experts, including one of the discoverers of the virus. Another, Dr. Don Francis, was with the CDC until 1992, and the principal figure in the book and HBO film "And The Band Played On." In our very first conversation after I detailed a great deal of what is said here, Don told me "Bruce, you're right. Don't ever quit!"
The hospital's silence and aloofness and the apathy of other governmental agencies inflicted a cruel death sentence on my daughter and many other young children. The shameful part of this tragedy, in my opinion, is the greedy, avaricious attitude of Cedars Sinai Medical Center. They made separate deals with the families, playing divide and conquer to avoid providing care for the surviving children.
Here is an institution with extremely close ties to the Jewish community, blatantly violating and besmirching one of the basic tenets of Judaism, CHARITY!
On January 26, 2005 a meeting was held in my home for the families of children born at Cedars who affected by this tragedy, both living and deceased. Three survivors, two young women and a young man were there. We shared experiences, and what was startling was that they were strikingly similar. Particularly the lack of compassion exhibited by the entire medical community, especially Cedars!
Elected officials, including Sen. Barack Obama (D-IL) and Rep. Jane Harman are now involved, and taking a pro-active role in seeking direct answers from CDC as to the destruction of documents in clear violation of federal law. But, they are still many issues, and questions that remain unanswered.
My instincts tell me that in the public interest three things are urgently needed at this point:
- Legislation that would make it mandatory for physicians and health care organizations to immediately notify the parents of minor children of any information they come into possession of that relates to the child's health, welfare, and well-being.
- Passage of the Steve Grissom Relief Fund Act which provides $100,000 in compensation to the families and recipients of HIV infected transfusions. (This is an extension of the Ricky Ray Act of 1998 that provides compensation to hemophiliacs who received HIV infected transfusions.)
- A thorough investigation by the Justice Department or congressional committee into the actions of Cedars Sinai Medical Center, LADHS, and CDC as they relate specifically to this tragedy.
To summarize briefly; the crux of this heartbreak is the failure of medical professionals and organizations to timely notify patients of information directly relating to their physical condition. Can you imagine a doctor not telling a patient they are treating that he or she has cancer for three or four years? To me that is unconscionable.
The facts here are crystal clear, and fully documented. Cedars-Sinai Medical Center had active and constructive knowledge of HIV infected blood transfusions stemming from its own blood bank as early as 1983. They conveyed that information to LADHS, who in turn had a duty to notify the CDC. If CDC was not told of this problem by LADHS in 1983, then they surely should have known of the problem in 1984, when Cedars sought grant funding for a "look-back" study on the problem from them.
In 1983, at the precise time Sam Kushnick died, CDC had a major investigative team in San Francisco tracking back blood donors in the gay community which was the basis for the book and movie "And The Band Played On." Why then, didn't they send a team to Los Angeles where it is patently clear there was an even larger problem emanating from the Cedars own blood bank?
Some professionals maintain the obligation to notify patients rests with the hospital. But, if the hospital abrogates that responsibility surely the obligation moves up the ladder, and lies with LADHS. And, if LADHS fails to fulfill its responsibility then the duty falls to CDC. Still, nothing was done by any of these institutions.
CDC goes so far as to state in writing that the study they provided funding for commenced January 1, 1987, at least three years after they were aware of the problem. So what were they doing in those intervening years?
The final report of that study, titled Project 42, was not published until May 1995, twelve years after the tragedy first surfaced. Subsequently, all material relating to the study was requested by me from CDC under the FOIA in 1997, and my congresswoman, Rep. Jane Harman in 1998. Under provisions of the California Public Records Act I made a similar request from the LADHS. Both claim all correspondence, records, data, etc. were destroyed as early as 1999. That is less than five years after the study was officially released to the public!
The last question is very simple: What are the document retention policies of both the CDC and LADHS? I have been told that the document retention policy of the funding agency prevails. If that is true that LADHS is subject to CDC's policy. And, CDC's Freedom of Information website specifically states "a record copy must be maintained permanently." I personally find it impossible to believe all this material was destroyed less than five years after completion of a study that took years, cost over $2,000,000, and affected so many lives!
So there it is. The implications and ramifications of this tragedy: legal, and more important, moral, and ethical. The sad part is, unless something is done, it could happen to anyone: even you, the Reader. It is said that the truth is indeed the best defense. I have been as honest as I can be in what I have said here for the truth is indeed the best defense. For anyone who finds this story too incredible to believe and wants to read it for themselves, I have placed a substantial portion of this material in "Letters and Legal Documents" on this site. It is available for independent, objective investigation.
Given what I have found, you be the judge. What do you think? Your opinions and comments are welcome and very important. You may even choose to write or e-mail Cedars-Sinai Medical Center, the LADHS, and CDC to express your own feelings and opinions.
More importantly, you can even donate through i care to a fund established for the surviving children, now in 2005, young adults.
Stay tuned because it ain't over, til it's over!
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