|Comment on denialists
Dec 11, 2005
I read your comments re. Eliza Jane Scovill. I knew someone who was an AIDS denialist and fought vigorously against the idea that HIV causes AIDS. And then....he died. Of HIV-related lymphoma.
How many of these deaths will it take before these denialists COME TO THEIR SENSES???
(Sorry for shouting. It's very frustrating.)
Response from Dr. Frascino
I totally understand your frustration. The denialists "believe" HIV doesn't cause AIDS. It's very difficult to argue against a "belief," because beliefs are not based on science, fact, reality or even common sense. Unfortunately, this particular belief results in tragic and often preventable consequences.
I'll reprint my recent posts on this topic below.
Please weigh in on Maggiore death Oct 27, 2005
Hi, Dr. Bob.
First off, thank you for being a voice of reason and logic when it comes to the subject of HIV/AIDS.
I'm sure you are aware of the recent death activist Christine Maggiore's young daughter, most likely from AIDS-related pneumonia. There has been a lot of talk among my friends about the death and many have concluded that it was within Mrs. Maggiore's rights to refuse HIV testing (and, consequently, HIV treatment) for her young daughter, even if this refusal ultimately resulted in the child's death. They also support the physicians who apparently allowed this to happen.
Could you please weigh in on what you think, both of the rights of the mother to refuse treatment and testing for her daughter and on the physicians who did not insist on treatment, either? You can probably tell that I think the child should have gotten tested and treated with the most effective medical procedures available, but I'm interested in the opinion of an expert.
Response from Dr. Frascino
Here's what we know about this tragic case so far: Christine Maggiore is the founder of an organization called "Alive and Well AIDS Alternatives," which claims HIV does not cause AIDS and that HIV tests and medications only cause harm. Christine Maggiore is HIV positive; she breastfed her two children and refused to allow them to be tested for HIV. Her three-year-old daughter died in May of this year of AIDS-related pneumonia, according to the Los Angeles County Coroner. Christine Maggiore and her husband Robin Scovill are now being investigated by the Los Angeles County Department of Children and Family Services for possible child endangerment related to their other child, an eight-year-old boy. Apparently after the death of their daughter they have now had the youngster tested for HIV and he is negative. They are expected to be able to retain custody of their son for now.
The Los Angeles Police Department is also investigating the parents on possible criminal charges for their handling of their daughter's health care. At least three physicians were involved. As to why none of them intervened, I do not know. The Medical Board of California is investigating the two California physicians (Jay Gordon of Santa Monica and Paul Fleiss) as well as a third doctor, Philip Inaco, who allegedly prescribed antibiotics for the young girl two days before her death, even though he is not licensed to practice medicine in the State of California.
This is another in a series of preventable tragedies directly linked to AIDS "denialists." Shockingly, Christine Maggiore has said her daughter's death has not changed her beliefs about HIV and she plans to send the initial coroner's finding to another "reviewer." Individuals have the right to "believe" whatever they wish, even if it's contrary to incontestable scientific fact, common sense and years of experience. However, children also have the right not to be harmed or killed by their parents' beliefs. Christine Maggiore remains an "AIDS denialist," refusing to believe HIV has anything to do with AIDS. She continues to "believe" in her "Alive and Well AIDS Alternatives." Unfortunately, her three-year-old daughter is no longer either "Alive" or "Well." Just how she can deny that, I do not know.
My feelings about this case, Ms. Maggiore, AIDS denialists and the physicians involved are self evident: a senseless, heartbreaking and totally preventable tragedy!
No question: Comment on Eliza Jane Scovill death Dec 6, 2005
http://www.thebody.com/Forums/AIDS/SafeSex/Current/Q169304.html More recent developments, Maggiore and Scovill hired a veterinary pathologist AIDS denialist Mohammed Al Bayati to read the coroner's report and make up alternative theories about what might have killed Eliza Jane. http://justiceforej.com/ej-chronology.html http://oracknows.blogspot.com/2005/11/hivaids-skeptic-questions-my-honesty.html It is likely that Christine and Robin will have a court date at some time, to answer for this. Brian HIV Databases http://www.hiv.lanl.gov
Response from Dr. Frascino
A "veterinary pathologist AIDS denialist???" Hmmm . . . and he's been hired to "make up alternative theories????" This case is becoming more and more tragic as it plays out. For our readers who don't know the story of AIDS denialists Christine Maggiore and Robin Scovill, their deceased three-year-old daughter Eliza Jane Scovill, or even what an "AIDS denialist" really is, I'll reprint a recent article from Project Inform below.
A case such as this is in equal parts heartbreaking and infuriating.
A Denialist's Dilemma November 2005 Christine Maggiore is a name well known in the subculture of people who believe that HIV is a harmless virus that doesn't cause AIDS. Her short book,What if Everything You Thought You Knew about AIDS was Wrong? has been a relatively big seller. She and her partner, Robin Scovill, produced a DVD promoting their AIDS denialist beliefs and she has appeared widely in the media. Part of her story is her belief that AIDS is not a concern for her, despite testing positive for HIV, because she does not believe the virus causes harm and that the tests are inaccurate. She contends she can support this belief with research. She tells of how a meeting with discredited UC Berkeley professor Peter Duesberg, more or less the father of the HIV denialist movement, changed her life. Few begrudge her the right to believe whatever she'd like, even if she is apparently ignoring hundreds of scientific papers demonstrating the role of HIV in AIDS. AIDS educators, including Project Inform, have been less sanguine about her public promotion of such views. Whatever her intentions, promotion of these views increases the risks of unprotected sex and discourages people from seeking necessary medical care until it is too late to help them. While Ms. Maggiore certainly has a right to espouse and even profit off the spread of misinformation about HIV, how all of this might affect her two children is something many felt was of grave concern. Apparently because of her belief that HIV is harmless, Maggiore rejected anti-HIV drugs to reduce the risk of mother-to-child HIV transmission and made a public display over her decision to breast feed, which has been shown to add another 10 to 15% risk of HIV transmission to a child. Whatever the parents might wish to believe, their children were in no position to make their own informed choices. Their mother's ill-founded beliefs, and only her beliefs, determined their fates. Since their birth, Ms. Maggiore has pointed to their apparent good health as evidence of her belief that HIV is harmless. Anyone aware of the natural history of HIV knew this proved nothing since only a relatively small percentage of children born to HIV-positive mothers acquired HIV even without the use of anti-HIV drugs to prevent transmission. Still, Maggiore persisted in promoting her children's health and her actions as a model for other HIV-positive women who sought to have children. By her own accounting, she convinced as many as 50 women to avoid the short course of anti-HIV therapy recommended during pregnancy and childbirth and a few subsequent weeks of treatment for the newborn. In the media and at public speaking engagements, Maggiore boasted of her refusal to employ common, proven methods for blocking mother-to-child transmission of HIV and of her refusal to have her children tested for HIV. She simply dismissed the fact that "apparent" good health for many years is the normal course of HIV infection and that most HIV-positive people remain symptom free for many years, even without treatment. Events of the year 2005 put an entirely new spotlight on Ms. Maggiore's beliefs and advice, and on the role of the medical establishment in dealing with parents who hold similar views. In May, three-year-old Eliza Jane Scovill, Christine's daughter, died from an apparently sudden and unexpected illness, just seven weeks after Maggiore reported that her children were in "excellent health" in a radio interview. Fast and furious seems an apt description of whatever happened to Eliza Jane. Though reports are sketchy, Maggiore was first concerned when her daughter came down with a runny nose. She brought Eliza Jane to a pediatrician who was filling in for one of her regular physicians, Dr. Paul Fleiss, best known as the father of "Hollywood Madam" Heidi Fleiss. Dr. Fleiss had been convicted of hiding profits of Heidi's enterprise from the IRS and served three years on probation. Like all of the physicians who examined Eliza Jane before her death, he had a reputation as a somewhat "unconventional" physician. Some say the children's physicians were chosen more for their acceptance of Maggiore's views than for their skill in treating children with HIV. No treatment was recommended that day, though the doctor claims that Eliza Jane's lungs were clear. Five days later, when the condition seemed to have worsened, she brought her daughter to another pediatrician, Dr. Jay Gordon, who had treated the child since birth. He diagnosed her with a self-limiting ear infection. Had Eliza Jane been known to be HIV-positive, a deeper approach to diagnostics might have been employed. Dr. Gordon apparently made no effort to have the child tested for HIV, not shortly after birth, nor then. According to a report in the LA Times, it is a decision he now regrets. Shortly afterward, Maggiore asked yet another doctor sympathetic to her views, Philip Incao, who was visiting from Denver, to look at her daughter. He recommended treatment for an ear infection with amoxicillin, a mild, first level antibiotic. Pediatricians questioned by the LA Times said that, had a physician known the child might be HIV-positive, a much stronger antibiotic would have been called for. A day later, her conditioned worsened as she began vomiting and was turning pale. The next morning, Eliza Jane Scovill was pronounced dead at Van Nuys Hospital. The grief of parents who have lost a child is enormous, whatever the cause, whatever the history. This does not, however, make it possible to simply overlook the situation surrounding the child's death. Little information was available about the cause of death for months afterward and all parties respectfully avoided public speculation and accusations. The period of silence, however, ended in late September when the LA Medical Examiner declared the cause of death to be "AIDS-related pneumonia". The implications of the diagnosis were explosive. To our knowledge, the medical examiners report has not been made public. Thus we can only base comments on what has been reported in the LA Times. The Medical Examiner needs to declare how evidence of HIV infection was determined and what kind of pneumonia they are talking about it. Some types, such as Pneumocystis carinii pneumonia (PCP), are all but unique to HIV since they occur only in the presence of a severely weakened immune system. In the years before HIV testing became available, a case of PCP was the signature event that announced the presence of advanced AIDS. Prior to the appearance of HIV disease in the late 1970s, PCP was so rare as to be virtually unknown to most physicians and the drugs used to treat it so rare as to be available only by special request from the Centers for Disease Control. The appearance of clustered cases of PCP was in fact key to the realization that a new disease had appeared in the population. If PCP was truly found in Eliza Jane Scovill, the medical examiner's report might easily end there as a proven case of AIDS. However, if it was another form of pneumonia, other tests would be needed to confirm that death was due to AIDS. For now, we simply lack the specifics on the cause of death and can only presume that the Medical Examiner's office knows what it is talking about. And if it does, the diagnosis raises devastating questions about child endangerment, improper medical care by physicians, and a failure of child welfare agencies to protect a child who need not have died. Moreoever, it makes a profound statement that HIV denialism is more than a misguided opinion; it is deadly and dangerous misinformation. Using today's tools, blocking mother-to-child transmission of HIV is all but fool proof. Moreover, treatment of HIV in those infected has an extremely high success rate. So the question that must be answered is "What went so tragically wrong as to result in the death of this innocent child?" Maggiore says of herself "I am a devastated, broken, grieving mother, but I am not second-guessing or questioning my understanding of the issue." No one questions the first half of her statement. Her pain is no doubt real and she has surely suffered. But when the first half of her statement is placed back to back with the second half, it causes one's jaw to drop. She has paid the ultimate price for her ill-founded beliefs and for spreading life-threatening misinformation to thousands -- she has paid with the life of her own child. Yet she clings to her beliefs, beliefs that contradict the universal conclusions of the world's most knowledgeable scientists and physicians. Perhaps it's easier to cling to these misguided beliefs than to face one's culpability. She continued in the LA Times: "Would I redo anything based on what happened? I don't think I would. I think I acted with the best information and the best of intentions with all my heart." Leaving her intentions aside, unless she knows something about the Medical Examiner's report that is shielded from everyone else, the statement speaks of an astonishing intellectual arrogance. How can anyone conclude that the tiny smattering of claims made by denialists, almost none of whom are experts in the field or people who have actually conducted any AIDS research, constitutes "the best information" She is convinced that her personal reading of a field of science, in which she has no training or credentials, is right and thousands of the best trained scientists on the planet are wrong. She remains so convinced of her own "rightness" perhaps because to do otherwise now would force her to acknowledge that her beliefs and stubbornness may have played a role in the death of her daughter. Given that she also achieved a degree of fame and financial gain from these beliefs, it will be interesting to see what the L.A. Country District Attorney has to say about the death of her daughter. We have read her book, studied her website and followed the lines of thinking proposed by the scientists she claims to respect. We find nothing new, nothing deep, nothing challenging. We see only a restatement of claims made mostly in the 1980's by Peter Duesberg and long since repeatedly refuted and rejected by the scientific community. We find her arguments against the role of HIV in AIDS to be facile, easily answered and overcome. They are views and conclusions that only make sense if you know little or nothing of the actual science of AIDS. Once you become familiar with great bulk of the research on AIDS, it is easy to see why so many scientists consider the beliefs of the denialists to be "pseudo-science." Similar cults of pseudo-science exist in most fields. Seldom, however, do people bet their own lives and the lives of their children on such beliefs. Is it right, is it fair, for a child to pay with her life for this level of arrogance on the part of a parent? There should be no surprise that child welfare officers are investigating the case. And what of the three doctors who stood by and saw only a minor illness as this child slipped from life to death? The only thing that can be said in their defense is that apparently none had much, if any experience, with the diagnosis or treatment of HIV disease. The blame for the selection of such physicians must also fall upon the parents. Doctors were apparently selected based on their willingness to accept the parent's unconventional views, rather than on their competence in treating two children who may have been exposed to HIV through birth. Still, physicians take an oath to do no harm. These three must answer to that oath. Surely, the word denial has seldom had a more clear definition that what is seen here. Ms. Maggiore and her partner face a terrible dilemma in their grief. They are faced with acknowledging the possibility they have been horribly wrong but so far have not done so. By definition, every honest respecter of science acknowledges the possibility, even the likelihood of error. What could motivate Maggiore and Scovill to close off all possible admission of error? Just one thing: if they acknowledge error, they must accept responsibility for the loss of their daughter. A denialist dilemma indeed. Yet perhaps nothing is more disturbing than the final comment made by Ms. Maggiore herself on a website she posted about the loss of her child: "Why our child -- so appreciated, so held, so carefully nurtured -- and not one ignored, abused or abandoned?" she wrote. "How come what we offered was not enough to keep her here when children with far less -- impatient distracted parents, a small apartment on a busy street, extended day care, Oscar Mayer Lunchables -- will happily stay?" What to make of that final sentence, wondering why this happened to her daughter, who, we learn repeatedly, was cherished and given the finer things of life, when it didn't happen to "impatient distracted parents," people who put their children in "a small apartment on a busy street" and used "extended day care" and gave them "Oscar Mayer Lunchables" (instead of organic meals?). What is she saying, perhaps that it would have been more appropriate for a poorer family to lose their child? Maybe that poorer family had the wisdom to listen to their doctor. Who, indeed, were the wiser parents?
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