The scientific evidence for HIV/AIDS

Christine Maggiore and Eliza Jane Scovill: Living and dying with HIV/AIDS denialism

by David Gorski
This post first appeared on Science-Based Medicine.

On Science-Based Medicine, we strive to apply the light of science and reason on all manner of unscientific belief systems about medicine. For the most part, but by no means exclusively, we have concentrated on so-called “complementary and alternative medicine” (CAM) because there is an active movement to infiltrate faith-based, rather than science-based, modalities into “conventional” medicine. Indeed, such efforts are well-financed, both by public and private organizations, and are alarmingly successful at insinuating postmodernist and pseudoscientific beliefs into academia to form an unholy new monster that has been termed by some as “quackademic medicine.”

However, one pseudoscientific belief system about medicine that we at SBM have perhaps not dealt with as much as we should is the belief that, contrary to the overwhelming scientific consensus built up over 25 years, the Human Immunodeficiency Virus (HIV) does not cause Acquired Immune Deficiency Syndrome (AIDS). True, working with Tara Smith, our fearless leader Steve Novella has published an excellent primer on the phenomenon, but not on this blog. This belief system, which is commonly called HIV/AIDS denial or HIV/AIDS denialism, is championed by virologist Peter Duesberg, along with a panoply of groups, such as Alive&Well AIDS Alternatives and Rethinking AIDS; blogs, such as Science Guardian, HIV/AIDS Skepticism, and AIDS Is Over; podcasts, such as How Positive Are You?; books, such as What If Everything You Thought You Knew About AIDS Was Wrong? by Christine Maggiore; and movies, such as The Other Side of AIDS (which resembles in many ways the anti-evolution movie Expelled! and the pro-quackery movie The Beautiful Truth). The influence of HIV/AIDS denialism is horrific, too, particularly in Africa, where advocates of such nonsense, such as Matthias Rath, have advocated quackery over antiretroviral therapy and had the ear of South African President Thabo Mbeki, who lost power in late 2007.

Before I go on to do a case study of the tragic price of HIV/AIDS denialism, perhaps it is worthwhile to take a moment to discuss just what HIV/AIDS denialism is. It is not “skepticism” or “rethinking” any more than creationism is a “rethinking” or “skepticism” of evolution, although denialists like to try to claim the mantle of those labels. Seth Kalichman, author of the book Denying AIDS: Conspiracy Theories, Pseudoscience, and Human Tragedy has written a good primer of the phenomenon, and I’ll appropriate an excerpt:

AIDS denialism actively propagates myths, misconceptions, and misinformation to distort and refute reality. Denialism is the outright rejection of science and medicine. It involves actively contradicting and disregarding medical advice. It is steady state. Denialism is not open to criticism, and evades modification. Denialism is only open to additional evidence supporting its tenets and such evidence most often comes from the misuse of science and from pseudoscience. AIDS denialists, often for the sake of personal preservation or recognition, hold fast to old ideas in the face of new evidence.

One feature of denialism is the tendency to think of the denialist position as beleaguered, and under attack and in a minority that has to stave off the assaults of the vast wrong-thinking majority. As a consequence, those involved in denialism often, in the other justifications for their position, declare their strong allegiance to the principle of free speech. Interestingly, then, denialists often set themselves up as plucky underdogs, battling for their right to speak the truth against a tide of misinformation and, as often as not, conspiracies aimed at keeping them silent.

Indeed, denialism, specifically the denial of scientific medicine, tends to be at the heart of the quackademic medicine movement, just as the denial of evolution is at the heart of the anti-evolution movement known as “intelligent design” creationism. It is a more general phenomenon that involves a dogged clinging to pseudoscientific or pseudohistorical beliefs (creationists and antivaccine advocates are a good example of the former; 9/11 Truthers and Holocaust deniers are a good example of the latter) and the use of logical fallacies and conspiracy theories to bolster their world view.

Like vaccine denialists, HIV/AIDS denialists promulgate an ideology that kills. Indeed, last week, it very likely did just that to a prominent HIV/AIDS denialist named Christine Maggiore, whose activism led her to form the group Alive&Well AIDS Alternatives. Three years earlier, her HIV/AIDS denialism cost the life of her daughter, Eliza Jane (EJ) Scovill. Let us examine both cases. In the case of Eliza Jane, I will go into considerable detail, because much more is known; in the case of Christine Maggiore’s death, less so, because much less is (yet) known.

From Businesswoman to HIV/AIDS Denialist

Before she became an HIV/AIDS denialist, Christine Maggiore was a successful businesswoman. In 1986, she started what ultimately developed into a multimillion dollar inport/export clothing company, Alessi International, which is based in Italy. However, her life changed in 1992, when during a routine medical examination she was found to be HIV-positive. Initially, she became involved with AIDS charities, including the AIDS Project and Women At Risk, but then in 1994 she met Peter Duesberg, the biologist who, arguably more than anyone else, started the whole phenomenon of HIV/AIDS denialism. By that time she also had had other HIV tests that varied from negative to indeterminate to positive, which had made her start to question whether she really had HIV. After being “converted” by Duesberg, she became an HIV/AIDS denialist and activist, founding Alive&Well, an organization dedicated to providing “information that raises questions about the accuracy of HIV tests, the safety and effectiveness of AIDS drug treatment, and the validity of most common assumptions about HIV and AIDS.” She herself refused to take antiretroviral drugs and discouraged other at-risk mothers from doing so–or from even permitting themselves to be tested for HIV–under the guise of “telling both sides.”

Not surprisingly, when she became pregnant with her second child Eliza Jane, she similarly refused to take antiretroviral drugs in order to decrease the risk of maternal-fetal transmission of HIV. Indeed, she even appeared on the cover of Mothering Magazine sporting her pregnant belly with the word AZT in a circle with a slash through it and the headline HIV+ Moms Say NO to AIDS Drugs. The issue featured Maggiore in an article entitled Safe and Sound Underground: HIV-Positive Women Birthing Outside the System and included other articles about AIDS, such as Molecular Miscarriage: Is the HIV Theory a Tragic Mistake? and AZT in Babies- Terrible Risk, Zero Benefit. (Mothering Magazine’s promotion of HIV/AIDS denialism and antivaccine misinformation may well make a topic for a future post in and of itself. Suffice it to say that Christine Maggiore was very much into “alternative medicine” and refused to vaccinate her children, making Mothering, which is well-known for its promotion of antivaccine views, the perfect venue for her.) After EJ was born, Maggiore refused to allow her to be tested for HIV and insisted on breast-feeding her, even though breastfeeding results in an unacceptable risk of virus transmission to the baby. The stage was thus set for the tragedy that was to come.

The Preventable Death of a Child

In March 2005, Christine Maggiore was interviewed on the liberal talk network Air America. In the interview, she boldly proclaimed:

"Our children have excellent records of health,” Maggiore said on the Air America program when asked about 7-year-old Charlie and 3-year-old Eliza Jane Scovill. “They’ve never had respiratory problems, flus, intractable colds, ear infections, nothing. So, our choices, however radical they may seem, are extremely well-founded."

As the article noted, seven weeks later, Eliza Jane was dead of Pneumocystis carinii pneumonia (PCP) and HIV encephalitis.

In early April, Eliza Jane developed a runny nose with yellow mucus. Here is what happened next:

On April 30, Maggiore took her daughter to a pediatrician covering for Fleiss. That doctor found the girl had clear lungs, no fever and adequate oxygen levels, the coroner’s report said.

Five days later, Maggiore sought a second opinion from Gordon. In an interview, Gordon said he suspected an ear infection but believed it could be resolved without antibiotics. In a follow-up call, he said, Eliza Jane’s parents told him she was getting better.

Maggiore then asked Denver physician Philip Incao, who was visiting Los Angeles for a lecture, to examine her, the mother told the coroner’s investigator. He found fluid in Eliza Jane’s right eardrum.

On May 14, Incao examined her again and prescribed amoxicillin, Maggiore told the coroner.

Incao is not licensed to practice medicine in California.

The next day, Eliza Jane vomited several times and her mother noticed she was pale. While Maggiore was on the phone with Incao, the little girl stopped breathing and “crumpled like a paper doll,” the mother told the coroner. She died early the next morning, at a Van Nuys hospital.

I consider it rather ironic that Dr. Jay Gordon, who has been castigated for his antivaccine apologia, was involved in the case. He was quoted thusly at the time:

Dr. Jay Gordon, a Santa Monica pediatrician who had treated Eliza Jane since she was a year old, said he should have demanded that she be tested for human immunodeficiency virus when, 11 days before she died, Maggiore brought her in with an apparent ear infection.

“It’s possible that the whole situation could have been changed if one of the doctors involved – one of the three doctors involved – had intervened,” said Gordon, who himself acknowledges that HIV causes AIDS. “It’s hindsight, Monday-morning quarterbacking, whatever you want to call it. Do I think I’m blameless in this? No, I’m not blameless.”

No, Dr. Gordon was not blameless. If he did not know that Christine Maggiore was HIV-positive, it’s not unreasonable to conclude that he probably should have, given that he had been caring for EJ since she was one, Maggiore’s notoriety in the Los Angeles area, and Dr. Gordon’s fame among the “alternative” medicine and antivaccine crowd. If he didn’t insist on having EJ tested for HIV, he should have. Of course, it’s very possible that Maggiore went from doctor to doctor in order to avoid having any of them find out about her HIV status or ask for an HIV test Indeed, Dr. Gordon states that his office called Maggiore a week later to see how EJ was doing. Be that as it may, he was closer to blameless than Christine Maggiore, who, along with her apologists in the HIV/AIDS denialism movement, immediately launched a public relations blitz to try to spin Eliza Jane’s death as not having been due to AIDS. The “real cause” of her death, according to the HIV/AIDS denialism spin, has to be heard to be believed. I will now examine in detail that blitz and why the spin used to try to convince the public that EJ did not die of AIDS complications was so scientifically ludicrous.

Spinning EJ’s Death

After the death of EJ, the HIV/AIDS denialist propaganda machine went into high gear. The man who was hired, Mohammed Ali Al-Bayati, PhD, DABT, DABVT, was the perfect choice to go over the L.A. County Coroner’s report and try to find another explanation for EJ’s death, regardless of how much he had to twist the truth to do it. Dr. Al-Bayati represents himself as a toxicologist and “pathologist.” However, most pathologists who deal with HIV are MD’s. So what kind of pathologist is he? “DABVT” stands for Diplomate, American Board of Veterinary Toxicology; so basically he’s a veterinary pathologist and toxicologist. Whether that means he’s qualified to evaluate postmortem findings in AIDS, I don’t know. He has a few papers published in the peer-reviewed medical literature, but none of them have anything to do with HIV or AIDS; so his publication history doesn’t help me evaluate him. He does, however, have a very obvious and undeniable bias, as demonstrated by his listing on the infamous Virus Myth website or his book Get All the Facts: HIV Does Not Cause AIDS.

Dr. Al-Bayati also runs a company called Toxi-Health International, which, according to its website, provides expert witness services and “can evaluate the health effect resulting from acute and chronic exposure” to various agents,” including medication reactions, adverse reactions to vaccines, pesticides, and a variety of other compounds. He is also notorious for his role in another famous case, in which he produced a report similar to the one that he would ultimately produce about EJ. This report tried to spin the death of a baby due to shaken baby syndrome was a case of “vaccine-induced encephalitis.” The report was one of the most outrageous lies I have ever seen, and was used to try to win the freedom of a baby killer named Alan Yurko. Dr. Al-Bayati’s report on the death of Eliza Jane Scovill would approach, and possibly even surpass, his previous “achievement.” Soon HIV/AIDS denialist bloggers would be trumpeting the “Al-Bayati report” far and wide as “proof” that EJ did not die of AIDS.

But what, according to Dr. Al-Bayati, did EJ die of? If we’re to believe Dr. Al-Bayati’s report, she died of an allergic reaction to amoxicillin prescribed to her. I kid you not.

The first thing I noticed when I first read Dr. Al-Bayati’s report is that it appears not to be intended for a scientific audience. Instead, it was constructed more like a legal document designed to cast “reasonable” doubt on the coroner’s conclusion that AIDS-related pneumonia was the cause of Eliza Jane’s death, rather than actually putting together a coherent case for an alternate explanation. One particularly egregious example of his style was that he lambasted the coroner for not testing for a certain virus (more about this below), and then confidently concluded that Eliza Jane had that virus and not HIV, even though he couldn’t possibly have made such a conclusion without the results of the very test that he criticized the coroner for not having done in the first place! Let’s summarize the autopsy conclusions as Dr. Al-Bayati reports them:

  1. Pneumocystis carinii was found in Eliza Jane’s lungs by Gomori methenamine silver staining in association with pink foamy casts in the alveoli. The lungs were also edematous (water-logged).
  2. Eliza Jane was mildly neutropenic (low neutrophil–a type of white blood cell–count) and profoundly anemic (low red blood cell count)
  3. Eliza Jane’s brain contained throughout its white matter with relative sparing of cortex a number of variable-sized microglial nodules characterized by multinucleate giant cells associated with moderate pallor and myelination, occasional macrophages, and and angiocentric pattern. These lesions stained positive by immunohistochemistry (IHC) for the HIV core p24 protein, a finding consistent with HIV encephalitis.
  4. There was atrophy of the spleen and thymus
  5. There was enlargement of the liver with fatty infiltrate of the cells (steatosis) and ascites.

Dr. Al-Bayati then tried to “refute” each of these findings, using a variety of handwaving techniques and “might have beens” that truly astounded me at the time. One thing that puzzled me, though, was why he thought it so important to refute the finding that HIV was present at all. After all, if, as Dr. Al-Bayati clearly believes very strongly, HIV does not cause AIDS, then why didn’t he just come right out and argue that in his report? Why didn’t he just argue that AIDS couldn’t possibly have killed Eliza Jane and that the HIV protein detected in her brain was a red herring because HIV doesn’t cause AIDS? To argue otherwise was intellectually dishonest.

But I digress. I can’t help myself whenever I come across HIV/AIDS denialists trying to demonstrate that an HIV-positive person who died of what is considered an AIDS-defining illness did not, in fact, die of HIV.

Dr. Al-Bayati did concede that P. carinii, an AIDS-defining organism, was present in Eliza Jane’s lungs but tried to wave this finding away by pointing out that there was not a “pneumonia” because no inflammation was observed, citing a definition in a pathology textbook (a technique not unlike arguing about technical words using dictionary definitions). He also stated that P. carinii is ubiquitous, only causing disease in immunosuppressed patients. There are couple of problems with these arguments. First, immunosuppressed AIDS patients tend not to be able to mount a very effective inflammatory response to infection. Indeed, it has been noted that, in HIV infection, PCP pneumonia provokes fewer inflammatory cells and that PCP is worse in patients immunosuppressed by other causes as their immune system recovers and starts attacking the organism, causing inflammation, as real pathologist Dr. Trent McBride explained at the time. Dr. McBride also pointed out, for P. carinii to be detected in routine tissue samples at autopsy, there have to be a lot of organisms there. In immunocompetent individuals, there simply aren’t enough bugs to show up on silver stain.

The one argument Dr. Al-Bayati made in this context that wasn’t totally off the wall is that PCP can occur due to immunosuppression from other causes, and he cited several references that show that PCP can occur in people without HIV if they are immunosuppressed for other reasons. Of course, this line of argument totally begged the question of what the cause of this Eliza Jane’s profound immunosuppression was in the first place if it wasn’t HIV infection. Given that the HIV protein was also detected in the brain, there was an obvious cause for the immunosuppression that led to the presence of so much P. carinii in Eliza Jane’s lungs. By definition, Eliza Jane had AIDS-associated PCP. Dr. Al-Bayati clearly realized that he had to try to throw doubt on that finding.

And how did he try to do that? Disputing the findings of an experienced neuropathologist, Dr. Maurice A. Verity of UCLA, who examined the sections of Eliza Jane’s brain, Dr. Al-Bayati argued that the brain lesions seen are nonspecific and that the finding of the HIV p24 protein must have been a false-positive. He pointed out a paper from 1992 indicating a high level of false positivity of this test in the presence of inflammation. Tellingly, however, despite listing the numbers and types of tissues stained in the study (which included only 3 brains from HIV-positive patients and one brain without HIV), he did not cite the percentage of false positive results reported in the paper, only that it is “common.” The problem with this line of argument is that it’s not enough just to say that this “might” have been a false positive using references that, being 13 years old at the time, may not even be relevant to how IHC for HIV proteins was done 2005 or today. He has to show compelling reason that it was, rather than hand-waving and saying that some combination of a viral infection and/or an allergic reaction to amoxicillin caused this (see below). Even Dr. Al-Bayati appeared to realize this shortcoming.

And that’s where his strangest argument of all came in.

There’s a saying in medicine that, when you hear hoofbeats you don’t look for zebras. (A zebra is medical slang for a rare or highly unlikely diagnosis.) Yes, occasionally it you will find a zebra, but the vast majority of the time you will not. Consequently, when one hears hoofbeats from a tragic case of a dead child of an HIV-positive mother who was found to have profound anemia, PCP, and encephalitic lesions with HIV proteins detected in them, by far the most likely diagnosis is AIDS. Indeed, in the differential diagnosis, the first ten diagnoses in the differential would be AIDS, AIDS, AIDS, AIDS, AIDS, AIDS, AIDS, AIDS, AIDS, and then–very far down the line in probabilities–everything else. Given this, it’s not surprising that, in his rebuttal, Dr. Al-Bayati heard not one, but at least two zebras approaching.

Which zebras, though? The first one was erythrocytic aplastic crisis due to infection with parvovirus B19 (PVB19, the virus mentioned above), of course! Shouldn’t it have been obvious? He based this speculation on Eliza Jane’s anemia, encephalitis, upper respiratory infection, and atrophy of the spleen and thymus. I’ll give him props, though. This was a clever gambit, because this particular virus is common enough that a significant percentage of children have been exposed to it, meaning that there’s a reasonable probability that antibodies to it would be found if looked for, whether it was this virus that actually caused Eliza Jane’s death or not. Let’s look at this claim a little more closely.

PVB19 is a parvovirus that is fairly common and can cause upper respiratory infections, erythema infectiosum, arthritis and arthralgias, and transient aplastic crisis. Dr. Al-Bayati made much of the ability of this virus to cause anemia by transiently suppressing the progenitor cells that develop into red blood cells and blames infection with this virus for Eliza Jane’s profound anemia. He also attributed Eliza Jane’s encephalitis and bone marrow atrophy to infection with this virus. However, he neglected the observation that PVB19 is rarely much of a problem in healthy individuals. Severe anemia secondary to PVB19 usually only occurs in patients with a pre-existing anemia or pre-existing destruction of red blood cells and who therefore require a high level of reticulocyte production to keep their blood counts up. Conditions in which this can be a problem include chronic hemolytic anemias, sickle cell anemia, thalassemia, acute hemorrhage, and iron deficiency anemia, all of which cause red blood cell loss requiring replacement. Also, severe infections of the bone marrow with PVB19 causing aplastic anemia are rare aside from patients with pre-existing immunosuppression, such as transplant recipients, patients with malignancy, and, of course, patients with HIV. In such patients, PVB19 infection can result in severe, prolonged, recurrent, or even permanent anemia. Dr. Al-Bayati did point out a couple of case reports of a aplastic anemia due to PVB19 in immunocompetent individuals. However, PVB19 appears to be a fairly rare cause of aplastic anemia in healthy individuals. It is, of course, possible that PVB19 infection caused Eliza Jane’s serious anemia (that’s where “reasonable doubt” comes in). However, even if it had, given what is known about this strain of parvovirus, a far more likely explanation would be that the virus caused Eliza Jane’s anemia because of immunosuppression secondary to her HIV infection, if it did anything at all.

The second zebra was a severe amoxicillin hypersensitivity. An amoxicillin allergic reaction in and of itself is not a zebra, but it was in the context of this particular case. Never mind that Eliza Jane had, as was emphasized in the report, never been exposed to antibiotics before and that her clinical course did not seem consistent with a hypersensitivity reaction. Never mind that there was no eosinophilia, no urticaria, or no other stigmata of an allergic reaction mentioned in Dr. Al-Bayati’s report (and you can bet that, had any of them been there, he would have mentioned them again and again). Amoxicillin hypersensitivity was also blamed for Eliza Jane’s steatosis (fatty liver infiltrate). It is true that amoxicillin-clavulanate has been associated with hepatocellular, cholestatic, granulomatous, or focal destructive cholangiopathy (all types of liver damage), and references are cited showing this. However, one would think that Dr. Al-Bayati would know that steatosis is not the same thing as any of these. Moreover, the pathology report did not state that Eliza Jane’s liver had any of the more common manifestations of amoxicillin-clavulanate-induced liver injury, casting further doubt on the antibiotic as the cause. (Drugs more classically associated with steatosis include valproic acid, tetracycline, amiodarone, and aspirin, not amoxicillin-clavulanate. I didn’t see any of Dr. Al-Bayati’s references supporting his implication that amoxicillin could cause steatosis within a day of exposure. Clearly, the steatosis must have been a pre-existing condition. As for the pulmonary edema and ascites reported, that could be due to allergic reaction, septic shock from an ear infection, cardiopulmonary collapse from whatever cause, or a number of other factors, but in the context of Eliza Jane’s HIV infection, rapid deterioriation, and cardiovascular collapse, it fits, especially given that steatosis is very common in pediatric AIDS patients.

The bottom line is that you can compare these two sets of conclusions about what caused Eliza Jane’s death and decide which seems more plausible. The first, the coroner’s report, looks at a child of an HIV-positive mother who refused to take AZT during pregnancy, breast-fed her child even though that is known to increase the rate of transmission of HIV, and refused to have her child tested for HIV, a child who collapsed after upper respiratory and ear infections, whose autopsy findings showed HIV encephalitis, P. carinii in the lungs, and severe anemia. Given such findings, it’s hard not to conclude that Eliza Jane died of AIDS complications. The second hypothesis, promulgated by an HIV “dissident” with a definite axe to grind, requires us to believe in not just one, but three, highly unlikely occurrences (plus one simply unlikely occurence), namely:

  1. A previously completely healthy girl developed PVB19 infection leading to both encephalitis and aplastic anemia (possible, but highly unlikely, and, even if PVB19 were found, it would be far more likely that it was able to cause anemia because of immunosuppression due to AIDS).
  2. This same girl also developed an acute allergic reaction to amoxicillin that led to cardiovascular collapse and–oh, by the way–also caused steatosis of the liver within a day after starting the drug, the steatosis being something even Dr. Al-Bayati’s own references do not seem to support as being likely.
  3. This same otherwise healthy girl had sufficient quantity of P. carinii in her lungs to show up on Gomori methenamine silver staining at her autopsy.
  4. The medical examiner and neuropathologist either botched the staining for the p24 protein (or that it was a false positive) and an experienced neuropathologist didn’t know the pitfalls of the diagnosis of HIV encephalitis using brain tissue sections.

A veritable herd of zebras indeed.

Sadly, none of this stopped Christine Maggiore from going on ABC’s PrimeTime Live to argue her case. In the intervening three years, efforts continued on and off to present Maggiore as lacking any culpability in EJ’s death, and, like a vampire, the Al-Bayati report kept rising from the dead whenever it was required. Denialist bloggers stated that Eliza Jane “died of an allergic reaction to an antibiotic, not of AIDS” as though it were a settled fact. In addition, Maggiore and her supporters continued a smear campaign against the L.A. County Coroner as incompetent or somehow in the pocket of big pharma. The preventable death of al little girl can’t be anything but tragic, but the desperate and scientifically dishonest methods used by HIV/AIDS denialists to try to deny that this little girl died of anything other than complications from AIDS added immeasurably to the tragedy.

History Repeats Itself

Three years later, it appears that Maggiore’s belief that HIV doesn’t cause AIDS might finally have caught up with her. I say “might have” because we do not know for sure right now and cannot know for sure without an autopsy. The one thing we do know is that about a week ago she died of pneumonia at the age of 52:

On Saturday, Maggiore died at her Van Nuys home, leaving a husband, a son and many unanswered questions. She was 52.

According to officials at the Los Angeles County coroner’s office, she had been treated for pneumonia in the last six months. Because she had recently been under a doctor’s care, no autopsy will be performed unless requested by the family, they said. Her husband, Robin Scovill, could not be reached for comment.

Maggiore was HIV-positive. When any HIV-positive person develops pneumonia, the galloping hooves usually signify horses, not zebras, the horse being an HIV-associated pneumonia. This is especially true in light of the coroner’s statement that she had been treated for pneumonia in the last six months. Two bouts of pneumonia in less than a year in an HIV-positive individual is, at the very least, very suspicious for AIDS-defining illness.

Of course, it is possible that Christine Maggiore, in fact, died of a community-acquired pneumonia or some other sudden cause. It happens sometimes. However, if Maggiore’s cause of death had been something other than a mystery illness, seemingly a pneumonia that sounds as though it might be HIV-related, chances are that Maggiore’s family would have stated plainly in a press release the cause of her death. Even though we’re unlikely ever to know for sure unless Maggiore’s family requests an autopsy, it’s still pretty unlikely that a 52 year old died of a simple community-acquired pneumonia or dropped dead of another illness, and if it wasn’t HIV-related why be so coy about it, anyway? Moreover, the fact that Maggiore had been treated for this “pneumonia” in the last six months sure sounds suspiciously as though she had developed a more chronic infection, consistent with Pneumocystis pneumonia. Assuming that’s the case, which is a pretty reasonable assumption, Maggiore has now joined the list of other HIV/AIDS denialists infected with HIV who have gone to their grave claiming that their HIV does not cause AIDS, that antiretrovirals do not improve survival of HIV-positive patients even though the evidence is overwhelming that they do, and that the illness that claimed them was not due to HIV, activists such as Michael Bellefountaine and David Pasquarelli.

Just as they did after EJ died, the HIV/AIDS denialists came out in force trying to deny that Maggiore died of HIV-related causes. Leading the charge to try to “prove” that it was not AIDS that killed Maggiore was Celia Farber, writing on on the blog of a prominent HIV/AIDS denialist blogger named Dean Esmay, who is most vociferous in his claim that AIDS did not kill Maggiore. Not unexpectedly, her claim was that Christina Maggiore did not die of AIDS. Surprisingly, according to Farber, it was rather a combination of stress and a “radical detoxification” regimen that led to Maggiore’s demise. However, even if Farber’s account is accurate, then, no matter what killed Maggiore, HIV or quackery, her case stands as a shining example that pseudoscience and antiscience kill. Indeed, HIV/AIDS denialists must be pretty desperate to blame quackery for Maggiore’s demise.

Farber begins with some drama, which, believe it or not, I can understand given that her friend just died but unfortunately her drama adds a lot of heat but no light on the case:

The news has been shattering to all who loved her around the world. Speaking for myself, I can say that Christine Maggiore was one of the strongest, most ethical, compassionate, intelligent, brave, funny, and decent human beings I have ever had the honor to know. I spoke to her in great depth about all aspects of life, death, love, and this battle we both found ourselves mired in, and I will be writing about her and about those conversations here, in the future. No matter what she was going through, and it was always, frankly, sheer hell-every day of her life, since 2005, she faced, acute grief, sadistic persecution, wild injustice, relentless battle, and deep betrayal-she was always there for her friends, and she never descended to human ugliness. She always tried to take the high road. She always tried to be stronger than any human being could ever be asked to be. I feared for her life, always. I feared the battle would kill her, as I have felt it could kill me, if I couldn’t find enough beauty to offset the malevolence. This is a deeply occult battle, and Christine got caught in its darkest shadows.

While I understand the pain the death of a loved one produces and even though one never likes to speak ill of the dead, I have to point out that Maggiore brought at least some of that “sheer hell” upon herself when her cultish belief in HIV/AIDS denial led her to fail to take simple steps that could have prevented the death of her daughter. I have no doubt that Maggiore suffered horribly from the grief that comes from losing a child, and I’m not unsympathetic to that. She suffered a loss that no parent should have to suffer, made all the more tragic because it was potentially preventable. Perhaps, somewhere deep within, she even felt guilty that her belief led her to fail to prevent it. However, the clear preventability of Eliza Jane Scovill’s death is why my sympathy for her mother only goes so far. While my sympathy for Eliza Jane for having had her young life snuffed out prematurely by AIDS is enormous, my sympathy for Eliza Jane’s mother ended at the point that she allowed an antivaccine and HIV/AIDS denialist hack to try to whitewash her daughter’s autopsy report and try to spin the cause of death as being from an antibiotic reaction, as described above. My sympathy also bumps up against Maggiore’s prominent role in spreading a denialist philosophy that has arguably led to the deaths of an estimated hundreds of thousands in Africa. As for this being a “deeply occult” battle, Farber is more correct than she knows, but not in the way she thinks. The battle is “occult” in the sense that HIV/AIDS denialism is very much like magic and the occult; it is based on faith, not science, and its adherents cling to it in the face of all evidence, science, and reason to the contrary like some dark religion.

So what did actually kill Christine Maggiore? Well, if we’re to believe Celia Farber, the rankest of quackery killed her, plain and simple:

She had apparently been on a radical cleansing and detox regimen that had sickened her and left her very weak, dehydrated, and unable to breathe. She was shortly thereafter diagnosed with pneumonia and placed on IV antibiotics and rehydration. But she didn’t make it.

Later in the post, Farber tries to refute the reports that Maggiore had been ill for a while:

She had been HIV positive since 1992, and never had an AIDS defining illness. Her foes have predictably begun their attacks, and there is already a misleading statement from the LA County Coroner’s office, against whom Christine was scheduled to testify two days from when she died, stating that she had had pneumonia for six months. This is incorrect, but helps foster the impression that it was an AIDS related pneumonia (PCP) which is a longer term illness.

This is a twisting of what the news reports actually said, which was: “According to officials at the Los Angeles County coroner’s office, she had been treated for pneumonia in the last six months.” To me that means she had been treated for pneumonia sometime within the last six months. It does not mean that she had had pneumonia for six months prior to her death. Also, that Maggiore lived symptom-free with HIV for 16 years does not mean that HIV doesn’t kill. As Nick Bennett explains, a period of 16 years is not too far outside of the normal range for time to progression of untreated HIV infections.

More importantly, though, Farber’s account has a glaring inconsistency. Here Farber tries to argue that Maggiore was as healthy as the proverbial horse, aside from her understandable emotional distress over the death of her daughter due to AIDS, and yet she was undergoing some sort of “radical detoxification regimen.” (One wonders if she was undergoing the Gonzalez regimen, which is certainly a radical detoxification regimen–and about as dubious a “therapy” as there is.) If Christine Maggiore was in fact so healthy, why did she think she needed to undergo such a radical detoxification regimen? Healthier people, a.k.a. the “worried well” who are most drawn to “alternative” medicine, tend to opt for much less radical detoxification regimens. True, sometimes healthy people do undergo extreme regimens for vague symptoms or as a “preventative” measure, but in general usually only people who have a serious illness or who have persistent health problems that they can’t shake are drawn to the radical detoxification regimens. According to Farber, Christine Maggiore underwent a “detox cleansing” regimen so radical that she perceives it as being plausible that the regimen was what caused Maggiore to lose weight, become weaker, and finally become too weak to fight off the pneumonia that killed her. Quite frankly, that must have been one hell of a “detox regimen,” and I’d be very curious to know exactly what it involved.

In any case, in a followup post, Farber published a letter allegedly written by Maggiore on December 19, a mere week before her death. First, she launches an attack against anyone who has suggested that Maggiore may have died of AIDS:

I’m told that I stand accused in Internet hate swamp sites of claiming Christine Maggiore died “from a cleanse,” in the name of “denying” that she died of AIDS.

She died, while suffering from bilateral bronchial pneumonia, after taking on a de-tox cleanse, is what I reported. These people at these swampy sites apparently can’t read, can’t decipher basic English. Every time I report they accuse me of “denying,” but how can you be denying while you are reporting?

Apparently, Farber can’t read her own words (see above), because that’s exactly what she said: That a “cleanse” rendered Maggiore so weak that she could not fight off a case of pneumonia. She apparently can’t read the words of her friend, either. I quote an excerpt:

Regarding my health, I finally figured out what’s going on…but it got really scary. Here’s the scoop I just sent a friend:

I have been through the absolute worst health nightmare ever. The cleanse, while definitely bringing about some profound benefits, left me feeling weak and dehydrated. I lost my appetite almost completely about 10 days ago and for some weird reason could only tolerate hot tea and hot chicken broth. I had been in touch with the cleanse doc who said all was typical, uncomfortable but typical. Not one to quit, I kept going. Then I started to have trouble breathing, I was feeling winded after the most simple task like making the bed.

This last Sunday, I stopped being able to sleep at all. So finally, genius that I am, I made an appointment to see my MD who is really smart and very well versed in natural health care and not at all into the HIV paradigm.I could only get in to see her yesterday. She said I was totally dehydrated and having a reaction to the herbs in the cleanse which she thought were suspicious. I asked her to check my lungs and she said they sounded clear. I told her I thought I should have a chest Xray anyway, just to be sure, but she was skeptical because I hadn’t had a cold, flu, cough or fever. But I insisted so she wrote me up to go to a radiology place that would give an immediate reading. By then I felt so ill I had to ask my neighbor to drive me and thank god he was there with me because I never would have made it to the radiologist without his help. As it turned out, the Xray showed a very serious case of bi-lateral bronchial pneumonia. The doctor immediately gave me IV rehydration, IV natural cortisone, and IV antibiotic.

It sure sounds to me as though Maggiore had been seriously ill at least since early December. Indeed, Farber’s reposting of Maggiore’s e-mail reinforces my opinion that she was either very ill beforehand, became ill (or more ill) after a “cleanse,” or both. Perhaps the most bizarre claim I’ve seen as to the cause of Maggiore’s death came from a commenter called Baby Pong on the Science Guardian blog, who claimed that EJ died as a result of a covert operation and that Maggiore’s death was similarly “extremely suspicious,” even going so far as to speculate that “the ‘holistic cleanse’ would have been an excellent opportunity for someone to have covertly introduced some extremely toxic substance into Christine’s body.” I don’t claim that this is what HIV/AIDS denialists are arguing in general; I only present it to show the depths of conspiracy mongering to which some of them routinely descend.

Of course, I can’t help but think of an alternate explanation to the one provided by Celia Farber, one that, to me at least, fits better the facts as we know them so far. I admit I’m speculating, but, without hard evidence from an autopsy to tell us what killed Christine Maggiore, I submit to you that my speculation fits the known facts better than Farber’s explanation. My explanation would be that Maggiore had been ill for a while. Because she had become ill, she started a “radical detoxification” regimen. Perhaps she even had a little dry cough that got a bit worse, which she would never allow herself to recognize as an early symptom of PCP. She became weaker and sicker not primarily because of whatever quack regimen she was undergoing but because of HIV. Most radical detoxification regimens, even the worst, usually do not sicken people to the point of being so weak they are susceptible to fatal pneumonia–unless, of course, they are already seriously ill. This is especially true after only one such “cleanse,” rather than the multiple sessions that quacks generally recommend.

Conclusion

Progress against the scourge of AIDS is one of the most dramatic success stories of science-based medicine. Think about it. In 1981 the CDC reported a newly identified immunodeficiency syndrome affecting homosexual men in New York and San Francisco and hemophiliacs. This syndrome was associated with lymphadenopathy, Kaposi’s sarcoma (a tumor previously very rare in populations other than old men of Mediterranean descent), and opportunistic infections such as PCP. Within four years, the virus causing the disease was isolated. Within a few short years after that, AZT was shown to be effective against HIV. By the mid-1990s, combinations of antiretroviral therapy including protease inhibitors were shown to significantly delay the onset of AIDS. Within a decade after that, these cocktails of three or four antiretroviral drugs, known as highly active antiretroviral therapy (HAART) had dramatically reduced mortality from HIV. In the meantime we learned about the clinical course of HIV infection, discovered genetic mutations that made some people very resistant to progression to AIDS, and characterized the molecular mechanism by which HIV gradually destroys the immune system. Within 25 years of its description as a distinct clinical entity, HIV had been transformed from a probable death sentence to a chronically manageable disease. True, many challenges remain. HAART has many side effects, some of them serious, and resistance to the drugs can develop. Nonetheless, by any reasonable measure, science-based medicine has done more faster to improve the outlook of HIV-infected patients than it has for virtually any other disease.

It is also very clear that HIV/AIDS denialism is a delusion that kills. It kills by encouraging HIV+ individuals not to take antiretroviral drugs, which have been shown unequivocably to prolong life and forestall progression of HIV infection to AIDS. It kills by encouraging quackery over effective antiretroviral therapy, as has happened in Africa, particularly under Thabo Mbeki’s regime in South Africa. Indeed, it has been estimated that the delay in introducing HAART therapy into Africa, which was in part due to denialist policies, resulted in the potentially preventable deaths of over 300,000. In the case of Christine Maggiore and her family, it has claimed at least one life and likely two lives, devastating a family. Unfortunately, HIV/AIDS denialists will continue to use logical fallacies, pseudoscience, and cherry picking of data and studies to argue otherwise.

There is, of course, one way for HIV/AIDS denialists to prove my discussion of Maggiore’s death wrong, and it’s one area where I actually agree with Celia Farber:

We all agree that it is imperative that an impartial and thorough autopsy bring to light all facts about Christine’s cause of death, and the state of her immune system, and how these facts might bring us all closer to the ultimate truth we all seek.

I agree with the expressed sentiment, and, if an autopsy is done and it turns out that Maggiore did not die of an AIDS-related pneumonia, I will forthrightly admit my speculation was incorrect. However, even if Maggiore did not die of AIDS, it would not in any way validate her HIV/AIDS denialist beliefs, although no doubt that’s exactly what denialists like Farber and Esmay would try to do. I will also point out that, if Farber’s account is confirmed, then Maggiore’s death would be prima facie evidence that unscientific quackery can kill.

If, on the other hand, however, an autopsy is performed and it does show PCP and other evidence of AIDS, will Celia Farber and Dean Esmay concede that AIDS killed Christine Maggiore? I sincerely doubt that they would. Indeed, if there is an autopsy and it shows that Christine Maggiore died of AIDS-related pneumonia, expect a replay of the Eliza Jane Scovill story. Expect more dubious attempts to spin the results as being something else. Expect HIV/AIDS denialists to trot out Dr. Al-Bayati again, who will dutifully examine the autopsy report and come up with an equally inane “explanation” for Maggiore’s death as he did for Eliza Jane’s

There are at least three tragedies in this sad tale. The first was the death of EJ at such a young age. She was sacrificed on the altar of her mother’s cultish refusal to accept the overwhelming scientific consensus that HIV causes AIDS and that antiretroviral therapy can not only prolong life but decrease the risk of maternal-fetal transmission of the virus. The second is that since the mid-1990s Maggiore has done a lot to spread the pseudoscience and misinformation that claims that HIV does not cause AIDS. Perhaps the worst of her offenses was that she discouraged at-risk women from being tested for HIV and HIV-positive women to take antiretroviral drugs during pregnancy to reduce the risk of maternal-fetal transmission of HIV. Moreover, she was undoubtedly a leader and spokesperson of the HIV/AIDS denialist movement, which is why denialists are now trying to hard to deny that her death might have been due to HIV, as Seth Kalichman documents. The third tragedy is that Maggiore had another child, a son. Fortunately, he appears to have escaped having HIV transmitted to him by his mother. Unfortunately, he and his father are left mourning the deaths of his sister and mother, whose deaths occurred a mere three years apart.

I have almost no hope that this tragedy, whatever the cause of Christine Maggiore’s death is determined to be or not to be, will silence HIV/AIDS denialists or even make them truly “rethink” their position, I do hope that Maggiore’s survivors, her husband Robin and her son Charlie, can somehow find some peace and manage to get on with their lives after their mourning is finished. A cultish ideology claimed at least one, and probably both, of them.

David H. Gorski, MD, PhD, FACS is a surgical oncologist
specializing in breast cancer and an Associate Professor of Surgery at
the Wayne State University School of Medicine based at the Barbara Ann
Karmanos Cancer Institute. He blogs at Science-Based Medicine.