Gay.com: The Unpublished Interview
Gay.com: The Unpublished Interview
Christine Maggiore Speaks with Benjamin Ryan of Gay.Com
In December 2005, Benjamin Ryan, an HIV testing counselor turned AIDS journalist, interviewed Christine Maggiore for an article that appeared January 7 at the web site Gay.com. We invite you to compare actual transcripts from their discussion to Ryans Christine Maggiore: AIDS Naysayer and consider posting a comment to the ongoing discussions at Gay.com
BR: What is the most fundamental reason why you question common beliefs about HIV? What are the main issues when it comes to HIV theory?
CM: First I want to note that I didnt wake up one day with these problems or questions. They developed over a period of time and after I had accepted everything as true to the extent I was teaching [AIDS awareness] through AIDS Project Los Angeles and was on the board of Women at Risk. I want to establish that and hope its clear in the article.
So what led me to start questioning The tests, firsts of all. Thats the basis for everything because AIDS is essentially a collection of diseases that have been around for many, many years, that all have known causes and known treatments that had no connection to HIV. The test is what distinguishes those diseases from being called what theyve always been called
BR: I have two questions. In your book you consistently refer to it as an AIDS test and not an HIV antibody test and I was wondering why that is.
CM: I dont think thats consistent throughout the text, and whenever it appears there are quote marks around it to indicate that its common parlance in our culture.
[The term AIDS test appears in Maggiores book four times: 1) Can you pass this AIDS test? in the introduction, 2) in the table of contents, 3) in the title of chapter three, and 4) once in the text in chapter three.]
BR: For the sake of accuracy, shouldnt you say HIV test?
CM: I think I have. If you look back at the book youll see that
BR: You make a big point in your book about the 29 illnesses that make up AIDS. I would argue that at least some of those conditions are extremely rare in people who are not HIV positive and quite common in people who are suffering from AIDS. To quote from Randy Shilts book (And The Band Played On): William had to look up Kaposis sarcoma in a medical text book because he had never heard of the ailment. Fortunately, the book said he had a good prognosis. Elderly Jewish or Italian men got Kaposis sarcoma. Twenty years later, they usually died of old age. The cancer itself however, appeared benign.
So in other words, not only is KS extremely rare but it was restricted to certain ethnic backgrounds and not found to be fatal. However, in HIV patients who are not treated with medications, this is vastly different. How do you react to that?
CM: First of all, you asked me about what I thought and now youre reading from a book, which is fine, and youre telling me what you think
BR: Right, I want to know how you respond to that
CM: Can I answer your first question first?
CM: If you have data to show me otherwise, Id be very grateful, but as far as I know there are no HIV tests that the US Food and Drug Administration has approvedif you look carefully at the test kit literaturefor the specific intended purpose of diagnosing HIV infection.
I think when youre going to take a disease and put it in the AIDS category based on a positive HIV test or the assumption that someones positive, you should be sure [they are infected with the virus]. Since 1993, it hasnt even been necessary for a person to have a positive HIV test to be given a diagnosis of HIV positive. There are many ways to declare a person positive, but none of these ways have been validated through a study that even attempts to show that when you take the fresh, uncultured plasma of someone who tests positive, you can actually find the virus.
Another thing thats unique about HIV tests is the dilution rate. Many viral antibody tests are run on straight serum, or they have dilution rates of 10:1, 3:1, 20:1, 30:1. But with HIV tests, you dilute the blood more than 300 times and theres no explanation for this practice in the test kit literature or in the medical literature. One doctor I work with, Roberto Giraldo whos an infection disease specialist, did some testing of HIV negative serum, and what he found is that when you dont dilute it, everyone tests HIV positive.
I think its really important that somewhere along the line someone has established what the true meaning of an HIV positive test is, and until that occurs, I cant logically speaking, give the test a lot of merit.
For other people, if they want to [test], I think thats fine. When people contact me and ask, Should I take an HIV test? I tell them its not up to me to decide. I give them information, I tell them to do what they think is best in their situation. In some cases where people come to me all twisted up because theyre convinced a rash on their ankle has something to do with a broken condom, I tell them I cant say the tests actually test for HIV or any [HIV] specific marker, but it might put their mind at ease to take the test. This isnt about deciding for other people, its about making information available so people can make decisions for themselves.
Now about what you said with regard to Kaposis Sarcoma, thats absolutely true. Its a new and virulent form that wasnt noted before, and it was occurring in people that didnt have it before, young people. But these people were also unusually immune suppressed, depleted. Its interesting too that long before the new drug cocktails came outand I dont think theres anyone claiming theres a KS-specific drug treatmentthat KS is down to about 5% of all AIDS cases.
I think it was in 1993, Dr Robert Gallo said KS is not caused by HIV; its caused by another virus HHV8. So, these things are very much up for discussion. I think the danger in this has always been the extreme views, the black and white, the Im right, youre wrong kind of an attitude. Science is all about questioning.
BR: Do you have a scientific background?
CM: No. Not at all.
BR: Are you HIV positive?
CM: According to the last test I took in 2001, I registered positive.
BR: Apparently youve had a cervical condition of some kind. What was that?
CM: It was an irregular Pap smear. Its not as exciting as it sounds. The doctor said that it was indicative of my HIV kicking in.
BR: Do you know what the condition was though?
CM: It was called a grade three Pap smear and it was supposed to be indicative of cervical dysplasia. And, as usualI have the hardest time with diagnostic testingI went back and did the Pap smear again, and it came back different. It was a grade 2. According to [the doctor], that meant I had a sexually transmitted condition, Human Papilloma Virus. But why would that pop up in the seventh year of being in a monogamous relationship with my husband whos also monogamous and doesnt have [HPV]?
BR: Because you can be infected with HPV for a decade and then get an irregular Pap smear. Thats part of the process with HPV
CM: Sure, if you go by that thinking. But I took a Pap smear again, and it came back normal. So I went from grade three, to grade two, to normal in the course of taking three Pap smears.
BR: You said in a radio interview at BreakForNew.com that you believe that chemicals are a huge cause of death in this country. I was wondering if thats a basis for your convictions about HIV and AIDS.
CM: I dont believe I said that chemicals are a huge cause of death. What I said was in the industrialized world, if you look at CDC numbers on what takes lives in this country, its diseases that arent acquired as contagious diseasesheart disease, sepsis, Alzheimersand people are suggesting chemical bases to conditions like Alzheimers. We have an extraordinarily high amount of cancers. Cancers have been linked to hormones and pesticides and chemicals. Children are generally born into chemically mediated situations and most people live their lives on a certain amount of chemicals. So it seems reasonable, when trying to understand life and death, to turn to toxicologists at a certain point to at least get their opinion.
BR: Do you have any fears that you may die of AIDS?
CM: My fear is that no matter what happenseven if I were abducted by aliensit would be written off to AIDS. If you read the fine print in the CDC HIV/AIDS Year End Surveillance Reports, theres a footnote that says that the people listed as AIDS deaths havent necessarily died of any AIDS-defining illnesses. So it seems that once youre pegged [as HIV positive], you end up there no matter what. Its very difficult to have anything happen to you once you test positive thats not attributed by someone, somehow to HIV. The way this is regarded, its almost like a no win, no escape situation.
BR: Is there a criminal investigation against you? If so, what is it?
CM: The police havent talked with me directly. I can get a sense [of what the investigation is about] by the questions that people have been asked by the police, but I only know that the investigation is ongoing.
BR: Why didnt you test Eliza Jane for HIV?
CM: For the same reason I did not want to subject my son Charlie to that kind of test. Its a non-specific test that according to the FDA, is not [approved] for the specific intended purpose of diagnosing HIV infection
BR: So, everything you told me before
CM: But in the case of a minor child, it becomes a matter of interpretation by agencies that remove children from peoples homes. Parents have had children taken away for being overweight, for being vegetarian, because the neighbors said they heard some screaming. And the social services system in Los Angeles, well, there was an article in our local newspaper in May 2004 in which the Department of Child and Family Services admitted that over 50% of children taken from their homes were put into more dangerous environments in foster care due to federal and state budgetary considerations. You dont want to mess with those people. So in minor children, its a completely different situation. I felt that by not subjecting them to this test, I was protecting them. And, they saw three separate pediatricians, none of whom ever suggested that the children be tested.
As you probably know, Charlie subsequentlywhen I realized that the Department of Social Services was going to be at our doortested negative four times in a row. The LA Times misrepresented that. They quoted DCSF as saying that they accepted Charlies three negative test results. Not so. Its very interesting to me how these tests are supposed to be accurate and reliable except, for some strange reason, one isnt good enough in the son of someone who tests HIV positive. We cant believe the test in that case.
BR: Yeah, Ive never understood why people have to do that.
CM: So he had four tests. The last one done in the presence of eight people who were supposed to be interested in protecting him from further emotional trauma and certainly from physical abuse. They made him take a test in their office, and when the blood wasnt coming out of his finger sufficiently, some guy he doesnt know comes over and squeezes his finger. It was really an awful thing to do.
I hope youll have the decency or perhaps the courage to note that my husband Robin, after nine years of normal relations that produced two children, tests HIV negative. So certainly, there are questions we can be asking about these tests: What do they mean, what do they show, how come they dont seem to work as we might imagine in certain circumstances?
BR: Moving on to Eliza Janes story, having listened to the radio program, I wonder if you can recap for me what were her symptoms leading up to when she took the amoxicillin.
CM: They changed over the course of that slightly less than three-week period. She started out with sniffles and a snotty nose, and that turned into a cough. And as I mentioned on the radio show, I was concerned about the cough because there were children in our various schools and classes that had prolonged coughs and I wanted to make sure she was OK. There were some rumors about whooping cough going around that were never substantiated, but it was enough to get me concerned, to take her to the pediatrician. And I asked them to put her on an oxygen meter, and they did and she was good.
BR: That was Dr Gordon?
CM: No, that was Dr Fleiss office.
BR: So you saw Dr Fleiss
BR: before May 5?
CM: I dont have the records in front of me, Id have to get those out to tell you the exact date, but we saw Fleiss the last week in April.
BR: And you said you already had an appointment with Dr Gordon
CM: Yes, in the process of setting up an appointment with Fleiss I set one up with Gordon in case I couldnt get in to see Fleiss. And then I thought it was good to go to Gordon because Eliza Jane had been in a month before for her most recent check up, and so I figured, why not, to be sure. And frankly, Charlies never been sick before. Hes thrown up, had fevers once in a while, but its not like weve had to deal with anything. Charlie has a cold and its gone in two days. Im not used to somebody not feeling well for more than a couple of days and I wanted to be sure.
BR: Did you tell the nurse at the time you called that Eliza Jane had a shortness of breath?
CM: When you call to make and appointment, you talk to the nurse. Theyre in a hurry, there are ringing telephones. From my perspective, I believe I said that there had been a lot of children coughing in and around school, some of them are coughing so much they end up with shortness of breath, I want to bring Eliza Jane in. And sometimes, frankly, in order to get in to see a pediatrician like Jay Gordon, youve got to pump it up a little bit, otherwise its a two-month wait.
BR: So youre saying theyre reporting an inaccurate statement about Eliza Jane and a shortness of breath?
CM: No, Id say thats what they probably heard.
BR: Did she ever have shortness of breath?
CM: Its really hard to describe what went on after she took the amoxicillin, but at that time
BR: But before then
CM: I would say not. The oxygen meter showed up fine, the pediatricians were checking her lungs and [they were] fine. First of all she wasnt coughing [by the time of the appointment with Gordon], that cleared up. She didnt have a high fever. That never really occurred if you look back on the medical records, the fever is 99, 101. She wasnt turning blue, and Ive seen her turn blue, I know what that looks like.
When she was very little, she stuffed a paper napkin in her mouth and started turning blue and we had to do the Red Cross stuff. Another time I cant remember what it was, a Lego part from her brother, and I had to do the whole rescue thing. So I know what somebody unable to breathe looks like. Its frightening, and its very distinct. When people are struggling to breathe, their lips turn blue, they can get blue under their finger nails. She just didnt have those signs and symptomsif she did, her doctors would have noticed. And if any of them suspected [pneumonia], knowing that I test HIV positiveand all of them know I test positivewell, Dr Fleiss is going to err on the side of caution. Gordon thinks HIV testing is a good idea and fully embraces the idea that HIV causes AIDS, so if he thought she was exhibiting shortness of breath, if he thought she had pneumonia, I think he would have said something to me, and would have encouraged us or demanded that we take action.
BR: Did he call you afterward to check in?
CM: We called each other.
BR: What did you tell him at the time?
CM: That she was doing better. She was out and about, had been out with me and Charlie, she seemed to be doing better. But, there was enough concern on my part, because she seemed uncomfortable, to have Philip Incao take a look. Hes a doctor we see outside the confines of the 20-minute visit in clinical practice.
BR: She was uncomfortable, what do you mean by that?
CM: She was having trouble sleeping at night. Something was bugging her and it was understandable because she had a notable amount of fluid in her ears according to what the doctors, both doctorsFleiss and Gordonsaid, and thats also what Philip Incao said. He said that the discomfort is understandable.
BR: I think when we spoke before, you said, Its not like Ive closed my mind and I have this path Im treading despite evidence to the contrary. Im always open to anybody that has anything thats reasonable. My thing is that this is about science, its not about beliefs. So having said that, I have interviewed a few people to get their opinion about her symptoms and what that might mean, if they are indicative of PC pneumonia, and I want to read you a quote here
CM: Are these people that saw her? Are these people that saw her before she died?
BR: Of course theyre not. These are people that did not see her. Granted, this is all speculating, but in any case
CM: So you want me to comment on speculative remarks from people who havent seen my daughter? Have they looked at her medical records?
BR: This is a comment from a doctor whos describing what a common case of PC pneumonia looks like
CM: May I have that doctors name?
BR: Yes, its Dr Ann Millman. Shes an associate professor of pediatrics and the head of the HIV Division of the Childrens Hospital in Seattle, Washington. She said she started there in 1991, and between 1991 and 1996 [she said] there were a lot of sick children before protease inhibitors.
[According to the CDCs 1996 Year End HIV/AIDS Surveillance Report, the total number of AIDS cases reported for the entire state of Washington since 1981 in children under 13 years old is 28.]
She said, We had children who otherwise didnt look very ill come in and over a period of days get extremely ill. And their initial symptoms are usually shortness of breath. They breathe faster. They havent had fevers, not always, but often their chest examlistening to themdoesnt sound bad. So you frequently dont hear the typical sounds of pneumonia that you do with normal bacterial pneumonia or a viral pneumoniawheezing and that kind of process. So it would not be atypical for someone to come in with shortness of breath but yet not sound bad.
And I spoke with Dr Gordon and also a gentleman name Craig Harvey at the coroners office and they all agree with that.
CM: Dr Gordon said, This is typical of pneumonia and I failed to check this child for pneumonia?
BR: Well, he expressed a great deal of regret about how he handled this case.
CM: In comment to that remark, Monday morning quarterbacking is never particularly helpful. Its done and the opportunity is over. And given the fact that when the autopsy was performed on May 18, no damage was seen in her lungs, given that the night she was in the emergency room they did a series of chest x-rays and couldnt see anything to explain her condition
CM: May I answer?
CM: We commonly associate PCP with AIDS, but PCP also affects people who are immune suppressed for other reasons [such as] chemotherapy. We have a friend who is very close to us whose brother died of PC pneumonia following cancer chemotherapy. Before he died, chest x-rays were done and the doctor said to his brother It looks like someone set his lungs on fire. If youre going to die of this, it does its damage. Its not that [PCP] can be killing you and not be evident.
BR: But this doctor has said otherwise. So you think that shes a quack?
CM: I have no knowledge of this person and now that I know her name and where shes located, Ill give her a call. And if you like, Ill report to you our conversation. But I really dont appreciate the way youre putting words in my mouth, that I think someones a quack and Ive never met them.
BR: All right. In terms of the inflammation, Dr Millman also said that its common that in an AIDS patient, because their immune system is so diminished, they dont have the ability to create inflammation, so its possible to have a little amount of inflammation but still have the lungs filled with PCP.
CM: In my daughters case, there was no inflammation. And if she was so terribly immune suppressed, its difficult to explain how she managed to go to classes three days a week and play dates two or more days a week. How she was always with other children, in parks and in school situations where your average kid gets sick all the time, where teachers get sick all the time because theyre exposed to so many children.
Also, some footage we gave to ABC News they didnt use in the [Prime Time] segment is pretty telling. A week before my daughter became ill, she was at a birthday party and you see when theyre singing Happy Birthday and cutting the cake, over and over again, shes blowing one of those party blowers with the long, extending tongue thing. How is this somebody with diminished lung capacity?
And if her immunity is so diminished that she didnt show signs of pneumonia, she is going to show other signs of illness. Did she have toxoplasmosis? No. Yeast? No. Meningitis? No. Did she have encephalitis? Certainly not [according to] her spinal fluid culture. Were around other people all the time. Shes around animals all the time. We traveled to New York in the winter, Canada in the winter. I mean the kid wasnt sick. So this idea that she couldnt mount an immune response because she was so immune suppressed doesnt fly. And, she had a higher than normal lymphocyte count. So, wheres the immune suppression?
I can understand that if you cant mount an immune response, your body would have difficulty manifesting some kind of defense against a microbe, but immune suppression doesnt happen over the course of a weekend. These things take time. PCP is not an acute disease, it develops over time and I think thats established in the medical literature.
I am very interested in giving this doctor a call myself.
[Maggiore left a message for Dr Millman on her voice mail at Childrens Hospital on December 18, 2005 asking about the statements attributed to her by Ryan. As of January 7, 2006, Millman has not responded to Maggiores message.]
BR: Apparently, the disease operates differently in children. Thats pretty much the basis for what she said.
CM: And then its said to operate differently in people who are positive, and then its said to operate differently in my daughter. I mean, essentially, the way its been explained so far is that my daughter was remarkably immune suppressed but managed somehow to show no signs of that during the first three years and five months of her life. Then suddenly and unusually, she developed an unseen, undetected case of PC pneumonia that even at her autopsy couldnt be found. Theres a leap going on here that Im not prepared to take. I want more information.
Do you know that the coroner who performed the autopsy is different from the one who came to the conclusion Eliza Jane had AIDS? The medical examiner Dr Changsri was the one who examined her lungs and we spoke to her on the phone that day, and she didnt see anything. We spoke to her on the phone the next week, and they still didnt have anything.
Dr Ribe was brought in afterward to resolve the case and Dr Ribe has a dubious past. Hes been the subject of a number of District Attorney reprimands in court settings over his testimony, over losing evidence, over finding evidence thats later thrown out. Hes been the subject of a number of credibility challenges and is currently being deposed in a case in which autopsy reports were changed two times based on conversations [with police detectives] and no new medical evidence.
BR: This is what I wanted to talk about next. I spoke with Craig Harvey, hes the Chief Investigator at the LA coroners office and I told him how you were questioning Dr Ribes credibility and this is what he had to say in response: Dr Ribe, when he conducts an investigation, forms an opinion. And when some new information comes forth, he has to re-examine his opinion. Sometimes, he has felt he has needed to revise his original opinion, which changes the scenario. It causes a lot of problems with the legal community, and we certainly understand that. The legal community wants something hard and concrete that they can charge to court with, but this is medicine, and they are looking at science as this unchanging model, and its not. When you have X, Y and Z pieces of information, and somebody shows you A, B and C pieces of information, you have to go back and look at everything and say, now with this new information, does this change the scenario, does this change my opinion?
CM: As long as the information A, B and C is scientific and medical, as his quote suggests, I dont have a problem with that. But when its based on conversations, thats a problem because theyre not presenting medical and scientific evidence, theyre having a conversation.
When you look at the case of Destiny Jacobo, wheres the medical and scientific evidence that the child was sexually assaulted as Ribe claimed? Thats pretty out there to take a position that a child has been sexually assaulted and to describe that as occurring in a particular manner and have no evidence in that part of the body for the abuse that youre alleging occurred.
It seems to me, from the research Ive done in this area, that most parents in our circumstancesthat is, parents that are being accused, either socially or legally, of having been responsible for the death of their childa lot of these people never get to see the autopsy before they go through the court system and are convicted. In our case, were working from a distinct advantage of being able to see and examine and get second opinions on the information thats being held up as the catalyst for the ongoing investigation. Were unique in that manner. William Jacobo and his partner, Patricia, Destinys mother, were sentenced to life in prison before they ever were able to see an autopsy report and raise questions and challenge that.
BR: Do you think Dr Ribe has a vendetta against you?
CM: I dont think Ribe has a vendetta against anybody whose autopsy he works on. I think he has a job to do. And it seems to me, from what Ive read, that it would appear he crosses the line from time to time, that line between science and medicine in changing [conclusions] in the absence of medical and scientific evidence.
BR: So you basically think that based on the anecdotal information about you, he changed his opinion?
CM: I cant say what motivated him when he came in to resolve this case and come to the conclusions that he did. I can only point to other cases in which medical evidence and scientific evidence have not been the motivating forces. Has this occurred in our case? I wont know until we get this into the proper legal forums. Do I have questions? Yes.
BR: According to Craig Harvey, an investigator called you in June. Is that correct?
CM: I had several calls. I would have to know what the call was in regard to.
BR: I guess she had asked you if you had any major medical problems and you said no, and after that, she started asking you about your book and Googling your name. Was that the conversation you had?
CM: No. No one [from the coroners office] asked me about my book and Googling my name.
BR: They asked the pediatrician?
CM: Correct. And that was in May. And I answered all the questions completely and forthrightly [during my interview].
BR: Did you sense any hostilities on the part [of the coroners office]?
CM: No. When I was being interviewed, it was a very pleasant conversation. At one point, [the coroners liaison] Denise Bertone asked me why my daughter wasnt fully vaccinated. I explained how we had done a lot of research, that our pediatrician supported our choices and she said, Youre giving me way too much information. Just knowing its an informed decision is fine. She then said she didnt understand why they give newborn babies Hepatitis B vaccines and we had a little side conversation about that. It was very friendly.
When my husband called [the coroners office] on the 18th of May, he was told the autopsy was being performed and that Dr Changsri would give him a call when she was done, which she did. And again, very friendly, very apologetic, very kind-hearted. When he spoke with her the week of our daughters memorial service, again, there was a lot of kindness, a lot of consideration, and genuinely expressed grief over not being able to tell us why our daughter died.
In people who are diagnosed with PCP on chest x-rays, they see dark spots indicative ofor consistent with is usually the languagePCP. Its there, and if its going to kill you, its going to be there in quantities to take your life. You dont remove the lungs and say no inflammation and then several months later, find microscopic evidence of PC the microbe and call it AIDS. Most people, most human beings carry that [microbe] and when you get PCP, its your own body thats suppressed enough to allow PC to grow and flourish. But it needs to grow and flourish to cause harm.
Its a difficult situation to explain. PCP wasnt showing up on x-rays, there was nothing wrong with [Eliza Janes] breathing on four doctor visitseven on an oxygen meter. Shes at a birthday party the week before blowing and blowing on a party horn, the hospital cant see anything [in her lungs], the autopsy didnt see anything. Then they bring in [Ribe] and shes got AIDS.
I think given the circumstances here, any reasonable person would grant me the right to question, which is what Im doing.
CM: Its my daughter, I need to live with this, somehow I have to live with this, and I want to know what happened to her.
BR: This is what Craig Harvey from the coroners office had to say about why they had no results in May. He said, Often times when we do have complicated autopsies or when the cause of death is not grossly obvious, sometimes the doctor will defer the death certificate pending the receipt of additional tests that have been ordered. So for anybody to say the conclusion of an autopsy, no cause of death has been found, is misstating the fact. And the fact is the cause of death is still being researched, is still being verified. It has not yet been determined because additional testing had been ordered by the coroner and until we get the results from those tests, final cause of death is not going to be entered into the death certificate until we get all the results back and we can review those results.
CM: There are two words that stick out in my mind from this quote: grossly obvious. He said, If a cause of death is not grossly obvious. How can you die of your lungs inability to take in oxygen to the extent that you suffocate, essentially, without that being grossly obvious?
BR: Well, he compared it to a gunshot wound. Thats what he would mean by grossly obvious.
CM: Grossly obvious I think would be your lungs have been destroyed. I mean, thats what needs to happen for you to die of PCP. You dont die of a little bit of PC or a mild case of PCP. You die of a florid, fatal case of PC pneumonia, and without that grossly obvious evidence, I think we have a problem.
Also, a friend of mine, Keith Relkin, in the days after the autopsy was performed, called the coroners office and asked them what their policy is with regard to HIV testing in cases of unexplained death. And again, they used that term obvious. They said We dont do across the board HIV testing in cases of unexplained death because its not necessary, because AIDS is so obvious. So on one hand, were talking about nothing grossly obvious while on the other hand AIDS is so obvious.
Being that Ribe was brought in to resolve the case, and he wasnt the medical examiner originally assigned, and given his record, Im surprised that more questions arent being raised about him. Certainly, hes been the subject of a number of articles in the Los Angeles Times.
BR: The Los Angeles Times had Dr Harry Vinters review the autopsy and he told me that he found the pathological findings very well described and that it was a very thorough report. He also said the HIV encephalitis was extremely severe and the PCP was extremely severe as well.
CM: Wheres the evidence of severity? Thats an interesting statement. How can encephalitis be severe if you have clear spinal fluid and no swelling of the brain?
BR: I dont know enough about it
CM: I dont think he does, either.
BR: Well, he said its possible to have a low amount of inflammation but still have PCP.
CM: I think a lot of things are possible in this world, but when you start talking about the improbable and the absurd and you have the initials MD after your name, it gets to be problematic. I have had people look at this report and give explanations that rely on an invisible, undetected, insidious pneumonia that occurs acutely over the course of a weekend and somehow kills without leaving evidence.
If you want to use the analogy of the gunshot wound, its like saying I found a bullet in the living room, someones dead in the bedroom, I dont see an entry wound, I dont see an exit wound and I dont see gross damage from that bullet, but they died of a gun shot. Thats kind of where theyre going with this. And this conversation with you only underscores my need to get clear, straight, logical, medical, scientific explanations as to what happened to my daughter because what youre quoting me from these people, its not happening here.
BR: Speaking of people and second opinions, and the opinion that she died of anaphylactic shock as a result of amoxicillin allergy, you had said, I believe, on the radio interview at BreakForNews.com, that your lawyers had encouraged you to sort of shop through pathologists until you found one whose findings agreed with you.
CM: No, that s a misunderstanding on your part. I had seen other lawyers
BR: other lawyers have encouraged you to do this
CM: these are not lawyers I hired, not lawyers that work for me or work with me. No. Those are people we interviewed and when they said that, to me right there, were not a team because they dont get it. Im not interested in [hiring] expert witnesses to come in and state the case as its convenient. I want a pathology report to know what happened to my daughter. We walked away from those attorneys. And when we walked into our attorney, we said were not playing that game.
BR: Someone argued that by going to Al-Bayati, you went to someone you knew would give you the result that said she didnt have AIDS because he doesnt even believe in AIDS
CM: Whos that someone?
BR: Someone. Just, Im just saying speculatively
CM: So people that we dont know say that, people that dont know me say that.
CM: Dr Al-Bayati called here the day after Eliza Jane died and outlined some information we would need to get from the coroner to make a clear evaluation as to what happened. And he had a feeling that things might get out of hand due to what I do and who I am, that there might be a diagnosis, so to speak, by association. He had his concerns and asked me if we would put him on a list to receive a copy of the report once it was ready, which we did.
BR: What were the questions he wanted you to ask?
CM: About organ weights, which we found out they took anyway, and he wanted some other information that I dont recall off hand. Id have to go back to the original faxes.
I was in total shock at the time. I wasnt thinking about what [her death] might imply. And then, a few days later, a mother from school came over and told us the story of how she lost her five year-old son under circumstances remarkably similar to that of Eliza Janes. Her son was sick with what was supposed to be a commonplace bronchial infection, and a couple days after starting treatment with an antibiotic, he died. This child died at home without ever getting to a hospital for any baseline testing which made her situation even worse. In this case, the coroner first attributed the childs death to encephalitis and her house was quarantined, she was told her three year-old would die, and the medical license of the doctor who last saw the child was suspended. After a discussion with the coroner, they redid the autopsy, and then they said it was meningitis. Finally, she hired a forensic pathologist thats licensed in the state of California to perform autopsies to do another one and they found that it was a viral infection that attacked the childs heart. So she said, Get a second opinion. What they did in her case was that they diagnosed her son with encephalitis based on a swollen brain but no other information that would point to that, and a brain swells after death.
This was a different coroner, lets be clear. But you can read any local newspaper in any city in this country and find cases of people getting let out of jail because the coroner thought one thing and it turned out to be another. It happens all the time. It made sense to get a second opinion. Thankfully, there were people around me thinking of that because I sure wasnt.
BR: In terms of an independent review, if you are being tried in a public court, as you are in many ways, why not find someone who truly is independent, who is not on your board?
CM: First of all, in the days and hours following my daughters death, my head wasnt on the court of public opinion
BR: When did he start doing his research?
CM: When the autopsy report became available.
BR: But that wasnt until four months later
CM: It wasnt [ready] until September 15, and I didnt know what [the coroners office] was going to say until they said it. And after they called here [September 12] and just brutally stated, Your daughter died of AIDS, we didnt even have an autopsy report to look at. In fact, the LA Times knew all about our daughters death before we did. We didnt have a copy of the autopsy report when they wrote their article. We got it the day before their article went to press after [the Times] held it for a week.
The [coroners office] finally stuck a report in the mail to us on September 21. They claimed that although I had given the address of our pathologist and our pediatrician on three separate occasions and they confirmed on two, and our attorney had sent in a request for his copy, they claimed they couldnt find any of that information.
By the time this was all over the newspapers, Im first seeing a copy of the autopsy report. Did I have somebody on task and ready to take a look at it? Yes, and it seemed like a good idea. And to have that reviewed by other pathologists who dont know me, sure. As a matter of fact, the report that Dr Al-Bayati did was accepted for publication by a medical journal with a review board of 21 doctors and scientists who dont know me
BR: But the medical journal, it seems to be a journal that disagrees with many common medical assumptions
CM: But you know what? Its a medical journal. Its 20 doctors and scientists who dont know me. You can discount them, but it seems like you become discountable by virtue of saying I think Christine Maggiore has some legitimate questions, I dont know that I agree with this autopsy report. It has been very difficult for us to find medical experts and pathologists who will review this for us, and speak up. Review it, sure. Speak up, no.
BR: So they dont want to get involved with the publicity.
CM: Theyve said they dont want to be associated with the controversy. Look what happens. I dont know who I could get that somebody wouldnt say, well you know, they didnt pay their income taxes in 1964 or their daughter was arrested for drunk driving.
BR: Youre referring to Dr Fleiss
CM: Its remarkable considering how much dirt people want to find, that more is not being slung in the form of mud.
BR: Speaking of mud slinging, this is what Harry Vinters from UCLA who reviewed the autopsy for the LA Times had this to say about Dr Al-Bayatis qualifications: Hes not pathologically qualified, hes not qualified to make pathologic interpretations. Do you think that Dr Al-Bayati is qualified?
CM: It doesnt matter what I think. UC Davis granted him a degree in comparative pathology, hes got a PhD in comparative pathology. Ill have to call Dr Vinters and find out what he thinks the problem is with having a degree in comparative pathology. Do you have his number?
[Maggiore called Dr Vinters at his office at UCLA on December 18th and left a detailed message on his voice mail asking for clarification of the comments cited by Ryan. As of January 7th, Vinters has not replied to the message.]
CM: See what happens? You have a PhD in comparative pathology, you work as a pathologist, your autopsy reviews are entered into court records in legal cases around in the country, but when youre associated with Christine Maggiore, people say youre not a pathologist, youre not qualified. His work is accepted in a court of law as legal document.
BR: But hes not certified by the American Board of Pathology.
CM: He doesnt need that to do what he does from my understanding.
BR: Craig Harvey from the coroners office says that Eliza Jane was HIV positive and that she died of AIDS. How do you respond to that?
CM: We sent a letter to the coroners office asking to see any and all HIV-related diagnostics that were performed on my daughter. That letter was not answered in the sense that they answered one question about coagulated blood and another minor question that I dont recall off hand. We were referred to the diagnostic lab to get the other information, and weve been waiting, and waiting to get replies. I dont think its fair on anybodys part to talk about stuff were waiting for. Its not in the autopsy.
[On January 5, 2005, the diagnostic laboratory referred to above replied to Maggiores request for information on all HIV-related diagnostics performed on her daughter by stating they would only provide the requested information in response to a subpoena. The labs position on the matter has been challenged in a follow up letter sent on January 6th by Maggiores attorney].
BR: Dr Gordon has spoken in the press regretfully about the treatment he gave and this is some of what he had said to me. He speculated that when his office called you after he saw you to check on Eliza Jane that you were lying when you said Eliza Jane was fine.
CM: Dr Gordon said I lied?
BR: He was speculating.
CM: OK. Im going to call him right now on his cell phone. Hold on.
CM (leaving message): Hey Jay, its Christine Maggiore. Im speaking to you and with a gentleman named Benjamin Ryan whos doing an interview for Gay.com, and he asked me to comment on a remark that he said you made, that you said I lied to you. Is that correct, Benjamin?
BR (on speaker phone): He speculated that you may have
CM: You speculate that I may have lied to you about Eliza Janes condition when you called me to check up on her. Id like to know if that is in fact how you think and feel, and if youd call me back and let me know. Im surprised to hear that and want to make sure thats correct. Give me a call back at your earliest convenience. Id appreciate it. Thank you.
BR: Heres what he said and this is bad. He speculates that the reason why you saw three doctors instead of returning to him was because if you did, he might have gotten concerned and gotten the ball rolling about HIV care. Heres a quote: Heres a case who didnt look that bad, had an ear infection. The question people have asked me is, why did she see three different doctors? I cant answer that, and I think I know why. What if you didnt want people to put together all the pieces of the puzzle? What if she knew by coming back to me and saying that her daughters worse, obviously, if she called me and said she was worse, an HIV positive family, I would have done whatever I needed to do to get her a blood test for an HIV screening or just a blood count.
CM: Is that the end of the quote?
BR: Yes. So, hes accusing you of staying away from him for fear that he might start initiating HIV care.
CM: I didnt have that fear. The reason why we saw Philip Incao is that I was concerned about Gordons advice: Take her to the park, open the windows, get her out for walks.
BR: Thats what Dr Gordon said?
CM: Yes, and I hadnt mentioned that until now. He didnt seem to understand my daughter and the situation. Granted, hes only
BR: what didnt he understand?
CM: It just didnt seem to be really great advice.
BR: Going out to the park, opening the windows?
CM: Yes. Open the windows, go to the park. She didnt feel good. Thats why I didnt go back. I wanted to get the opinion of someone who knew her better, knew her temperament and had seen her more often. Jays only seen my daughter three times.
BR: Hes said that he disagrees with your ideas about HIV and he definitely does believe in HIV causing AIDS, but he wanted to keep seeing you, seeing Eliza Jane for this reason. He said I saw myself as a bridge between people who were going to have nothing to do with conventional medicine and conventional medicine. I knew the only thing I could do was watch Eliza Jane as closely as possible and to trust the parent.
CM: Thats a bit of a broad statement people who have nothing to do with conventional medicine. Again, it shows me that Dr Gordon doesnt know us, and from his remarks during our visit, really doesnt know our child. We gave our daughter conventional medicine, an antibiotic that he was reluctant to prescribe.
BR: Do you feel betrayed by him?
CM: I think disappointed is a good word, if your quotes are correct. And Ill have a conversation with him directly.
BR: He said he spoke to LA Times, and he spoke to ABC, too.
CM: After those interviews, except for Prime Time, Ive spoken with him. In the case of the Los Angeles Times, he told me his remarks were taken out of context and that he said things about what great parents we are and so forth
BR: He definitely said he doesnt think you deserve to be punished, that youve suffered enough.
CM: You know, frankly, those kind of remarks to me seem like platitudes. If Ive done something wrong, then certainly, I would deserve to be punished. Those platitudes are sweet and swell but they dont seem to me to come from any real deep place. Oh, shes had enough, lets leave her alone. The heck with that, I want to know whats going on here.
BR: He said, I do not wish to sell this woman down the river. I know shes very sincere in her beliefs. I wish she would recant some of them. She had the chance on the air to hit a home run. She could have said, you know, I still really believe this but I think we should all open our minds.
CM: Again, this points to how Jay Gordon doesnt know me. We havent had conversations outside of his practice, and when you go to his practice, he does most of the talking. What hes saying, it sounds like hes talking about The Inquisition, that I need to recant my beliefs. What I do isnt based on religious beliefs or dogma, its based on careful examination and research and filtering that through other experts, my intuition and logic and seeing how that applies to any current situation. This notion that I have to recant beliefs sounds religious and bizarre. Clearly, the guy doesnt know me. Its unfortunate that weve been forced into this situation together because I dont think he can speak to who I am and why I make the decisions I do.
BR: I think he sees you as something of an adversary to his position as a doctor.
CM: Again, I would say he doesnt know me.
BR: Moving on to the issue of amoxicillin, youve spoken of the dangers of chemicals. It seems such an irony as you said that the first time she takes an antibiotic, she would die. How do you react to that?
CM: No matter what someone dies from, you remain with the terrible feeling of loss. Amoxicillin, congenital heart disease, anything. You just feel terrible. What can I say? I dont have my daughter. Nothing changes through this speculation. I want to understand what happened because, lifefortunately or unfortunatelygoes on, and I need to find a way to live with this, and the only way I can is through a clear understanding of what happened.
BR: Another thing Dr Gordon said, I have never seen a fatal reaction to amoxicillin in my 30 years of practice as a doctor. I know that they happen, but I think theres a far more likely explanation for this.
CM: Then maybe he can provide it for me. Ill see if I can book an appointment with him where I dont have to pay $250 for an office visit because I would like to speak with him.
BR: I think hes referring to the autopsy. The autopsy didnt find any evidence of amoxicillin, which doesnt mean that she didnt take it. It just means that she might have metabolized it. But, some people might start to speculate that there was no amoxicillin. What would you say to those kind of skeptics?
CM: I think were getting into the realm of evil here, ill motivated people. Are we going to start to question if shes my child? How do far do you want to go with this? People who arent here, who dont know us can say all kinds of things. What can I do about that? What can anybody do about that? It gives you an indication of how difficult it is to find people who will speak up and speak out based on the facts when its clear that being associated with this issueand in this particular moment with this caseputs you in the line of fire.
And speaking of the line of fire, Im going to be in it if I dont get ready to get Charlie out the door to school this morning.
BR: I just have one last question. In my position, since I write about HIV for a living, and Ive been doing this for 10 years, Im obviously coming from a very different ideological standpoint than you do. But, in reading your book I will admit a feeling of doubt that causes anxiety, I mean, what if everything I thought about AIDS was wrong? Although, I dont agree with what you say in your book But do you ever have those feelings of doubt, doubt about how you treated Eliza Janes medical care?
CM: Every human being has doubt. There are moments in which I have a headache and I think: is it a brain tumor? Im human. Do I doubt the decisions Ive made, do I suddenly, in the darkest moments of the night, believe I should have taken AZT, or that there must be a study out there that shows validation of HIV tests by direct isolation of HIV from the fresh, uncultured plasma of people who test HIV positive or manifest viral load? No. Its not in this realm of belief. I try to keep fear out of the equation. Its never good to make decisions based on fear, based on insecurity. Its better to go with evidence and documentation, and let that find its place. So no, I dont sit up at night and rethink all these things.
BR: I just got a fax back from a doctor at Harvard who says the same thing as the woman in Seattle, how PCP can develop in children
CM: Again, those are speculative remarks, not based on this particular patient and theyre coming after the fact, and in this case, with a certain amount of prejudice.
BR: Well, OK. Thanks.
CM: Ill talk to you later.