Tuesday, December 23, 2008
DR. JOCELYN DEE:
Practitioner Admits HIV Only “Associated” with AIDS
interview by CHRISTINE MAGGIORE and DAVID CROWE
Photo: Christine Maggiore speaks at H.E.A.L.-San Diego, April 2004
On October 28, regular viewers of the TV series Law and Order: Special Victims Unit were treated — if that’s the appropriate word — to an episode called “Retro” that dealt head-on with what the show referred to as “AIDS denialism.” It was a wild and woolly tale, full of the exaggerated melodramatics for which the Law and Order programs are famous, which began with a four-month-old baby being left in a taxicab, taken to an emergency room and there examined and diagnosed with full-blown AIDS. They trace the baby’s medical care to a pediatrician who rejects the idea that HIV causes AIDS and refuses to administer standard anti-HIV medications.
Investigating the doctor’s other patients, the police detectives who are the show’s regular characters run across a woman whose four-year-old daughter was being cared for by the same doctor when she died unexpectedly. The “denialist” doctor diagnosed her death as an allergic reaction to an antibiotic, but the police have the girl’s body exhumed and an autopsy reveals she “really” died of an AIDS-related infection. It soon becomes apparent to anyone who knows Christine Maggiore, founder of Alive and Well-Los Angeles and prominent activist in the alternative (so-called “denialist”) AIDS movement for 15 years, that this character is loosely based on her — even the show started with the usual “this is fiction” disclaimer and the actress playing the mother is large, blonde and rather blowsy-looking — as different from the dark-haired, wiry, petite Maggiore as the casting department could come up with and still be the right age and “type” for the role.
Maggiore lost her real daughter, Eliza Jane Scovill, in May 2005. The four-year-old girl had been diagnosed with an ear infection and her pediatrician prescribed amoxicillin, an antibiotic commonly given to children. Eliza Jane unexpectedly took a turn for the worse and died under mysterious circumstances. The Los Angeles County coroner’s office was at first unable to determine a cause of death — until suddenly their medical examiner, Dr. James Ribe, leaked to a Los Angeles Times reporter that he had decided that Eliza Jane died from AIDS complications. Maggiore suggested at the time that Dr. Ribe had changed his mind when he learned — as anybody could from a Web search of her name — that she was a prominent alternative AIDS activist and the author of a book, What If Everything You Thought You Knew About AIDS Was Wrong?
Dr. Ribe not only talked to the Los Angeles Times — at one point Maggiore joked that the reporter writing the stories about her, Charles Ornstein, seemed to know more about her than she did herself — but to other media outlets as well. He also referred her case to the Los Angeles County district attorney for possible prosecution for child endangerment and/or neglect — though the district attorney’s investigators found that Maggiore and Eliza Jane’s father, filmmaker Robin Scovill, had been model parents and declined to prosecute. Meanwhile, Maggiore sought another opinion from a toxicologist, Dr. Mohammed Ali Al-Bayati, who’s a member of the Alive and Well board and who came to the conclusion that Eliza Jane died of an allergic reaction to amoxicillin.
The Law and Order: Special Victims Unit program — which Maggiore not surprisingly couldn’t bring herself to watch complete — came off as a kind of wish-fulfillment fantasy, as if the writers had been so angered by the district attorney’s refusal to prosecute her and her doctor that they invented a scenario in which events played out in fiction the way they’d wanted them to in life. Maggiore did two episodes of the AIDS podcast “How Positive Are You?,” which she co-hosts with Reappraising AIDS president David Crowe, discussing the program, and sought out Dr. Jocelyn Dee, who had apparently served as a technical advisor. The first time, Dr. Dee said she had to “reschedule” — an old and familiar story to alternative AIDS activists, who are used to mainstream AIDS scientists, doctors and activists agreeing to joint appearances and then canceling at the last minute.
Dr. Dee finally showed up for an episode of “How Positive Are You?” taped just before Thanksgiving and posted on the Web in early December. As Maggiore tried to pin down just what she and other mainstreamers mean by the term “AIDS denialist,” Dr. Dee, an AIDS specialist at USC’s Rand Schrader Clinic where poor, uneducated, uninsured, often illiterate, sometimes homeless, and frequently drug-addicted HIV-positives can receive medical care regardless of ability to pay, recalled attending a meeting with the writing and production staff of Law and Order but said she merely answered general questions and wasn’t told the storyline of any specific episode. Dr. Dee also made the astonishing admission that HIV has never been proven to cause AIDS according to Koch’s Postulates, the classic scientific rules for establishing that a particular microbe causes a particular disease, and that the connection between HIV and AIDS is merely “associative.”
The following interview has been taken from episode 11 of “How Positive Are You?,” edited for space and readability. To hear the complete episode, or to stream or download any other episode of “How Positive Are You?,” visit the podcast’s Web site at http://www.howpositiveareyou.com/?feed=podcast
Christine Maggiore: Hello, and welcome to “How Positive Are You,” Dr. Jocelyn Dee. We appreciate your joining us today.
Dr. Jocelyn Dee: Thank you.
Maggiore: So, to begin, why don’t you tell us a little bit about yourself? I know that you’re a doctor at the Rand Schrader Clinic. What is it that you do there?
Dr. Dee: Oh, I am the assistant medical director for the clinic. We are a county clinic that services people who have infectious diseases, including HIV. I typically see patients in the morning and then I do more supervisory work and administrative work in the afternoon, but we try to help anyone who comes by our door.
Maggiore: And you also work as a consultant to the television industry?
Dr. Dee: Yes. We were contacted by an organization called Hollywood and Health to help advise a TV program called Law and Order: SVU, because they were interested in doing storylines related to infectious diseases and HIV/AIDS. They wanted to get some input from physicians to try to make their storylines more realistic.
Maggiore: So, when Law and Order: SVU came to you, did they have a story they already wanted to tell, or did you actually help in the shaping of that story?
Dr. Dee: Actually, we had a room full of people. We had several writers there, including some press people and someone from Hollywood and Health, and they were all writing stories. They did not tell us what the stories were about because they were still shaping them. They just asked us basic questions about HIV and about denialism, and infectious diseases in general. They did not tell us what any of the stories were about.
Maggiore: When you say “press people” were there, was this a special occasion, or do they roll out the red carpet every time they have an advisor come by?
Dr. Dee: It seemed like it was special because it was a new program they put into effect with Hollywood and Health. They were doing that with organ donations and HIV at the time.
Maggiore: I see. Now, I wanted to ask you some specific questions with regard to the development of this specific Law and Order program. Have you had a chance to look at that yet?
Dr. Dee: No. I did look at the clips, and I realized that it was very difficult for me to go into detail with that particular episode, called “Retro,” because as a physician myself, and being in the front lines and seeing people suffer through no fault of their own, and having young children of my own and actually expecting another, it was quite difficult for me to relive that through someone else. BI see that on a daily basis, and to actually live through it again fictionally was to the point of unbearable.
Because I have young children of my own, I can understand denial, because we do care for quite a few young women in my practice as well, that there is a sense of guilt. It is often easier to deny something than to have to face up to the consequences of decisions or acts that you have made in your past. And, unfortunately, it can end up really causing more suffering in the end — as we saw.
Maggiore: Now I know that when you are at a county facility, and you take anyone through your doors, you’re probably dealing mostly with low-income people?
Dr. Dee: Yes. A lot of our patients are indigent, and I’ve actually had to work through all of their problems. A lot of our patients have more socioeconomic problems that we have to deal with, and then to see someone without the socioeconomic problems and yet still have the same medical problems is very disconcerting.
Maggiore: What would be the difference between guilt and denial, in your opinion?
Dr. Dee: Well, I think everyone’s got guilt in some way, especially growing up Catholic. We’ve all got guilt, but how we deal with the guilt is different from everyone. I’m not a psychiatrist so I can’t tell you all the specifics about it, but some people deal with it with denial. And it’s particularly unfortunate when you have innocent children involved.
Maggiore: How does denial manifest? What would be the distinguishing mark between guilt and denial? Where is the line drawn? What do you see in a patient that lets you say, “Oh, here’s a person in denial?”
Dr. Dee: It’s a little more challenging in that situation because a lot of our patients here in the county are educationally challenged. They didn’t have a chance to go to school and learn how to read, etc., even in their own mother tongue. We try to provide AIDS support services to adequately educate patients about the disease process, so to teach them pretty much like an HIV 101, in their own primary language. Of course we have interpreters here, and we have people who specialize in that here.
We try to work with patients according to their own educational levels. When we feel like we’ve been able to answer all their questions and yet they’re still unable to deal with the issues, we start suspecting that there’s some denialism involved.
Maggiore: What would be the difference between that and somebody who says, “I am not indigent. I have attended school. I can read quite well. I am not drug-addicted. I’ve just done a lot of research, and I feel that there are outstanding scientific questions not only with regards to the relationship between HIV and AIDS, but also about the effects of the drugs. I’m feeling good right now, and I would like to forgo drug therapies for the time.” Is that a person in denial?
Dr. Dee: That could be someone who is actually quite sane, because there are a lot of questions that are left unanswered in HIV and AIDS. And no one will say — at least truthfully — that they have all the answers. There have not been any experiments — and, of course, this is ethically reasonable — that we would purposefully give someone HIV and see what happens to them. So we would not be able to fulfill Koch’s postulates, the scientific reasoning that we usually like to go through [to establish a particular microbe as the cause of a particular disease].
I understand, and I actually am quite happy when I know that people have thought about it, because there are patients who don’t want to think about it at all. So when someone says they’ve thought about it and they’re concerned about side effects of the drugs, and they have researched HIV, then I’m quite happy, because that’s a first step that was already taken on the patient’s part. We deal with larger issues here, where the patients don’t even want to hear about it, and so that’s one step back. We have to get them to take that extra step that the person you just described to me has already taken.
Crowe: There was a case in Canada not long ago of a woman who was convicted of “failing to provide the necessities of life to a child” because she either refused to give AZT to the baby or she was breast-feeding the baby. [Mainstream HIV/AIDS physicians and researchers strongly advise HIV-positive mothers against breast-feeding their babies on the ground that the virus could be transmitted through breast milk.] That’s close to some of these Law and Order episodes. What do you think about cases like that: and if you were approached by a prosecutor, what would your advice be?
Dr. Dee: I actually am quite stern about those things, and I can tell you now that they’re never going to put me on a jury based on what my answers would be. I believe that, even if a patient or a person cannot believe that there is a causal relationship between HIV and AIDS, opportunistic infections and death, there is an associative relationship. To me, the association is strong enough to warrant treatment, especially with the newer drugs on the market, because we have fewer side effects and we have better long-term data. And when it’s another human being involved, I think that we need to give science the benefit of the doubt.
Crowe: So what you’re saying is it’s not really necessary to prove that there’s a causal relationship between HIV and AIDS, as long as there is a well-documented association.
Dr. Dee: In my eyes, yes, and this is not just true in HIV and AIDS, but there are a lot of other diseases out there where we are not 100 percent sure that we have a causal relationship. Yet we still treat those, and it’s always a balance between advantages and disadvantages, or pros and cons. And, unfortunately, the disadvantage to not treating when someone has HIV or AIDS is catastrophic. It’s not something that you can ameliorate later on. So, like I said before, if there’s another human being involved, you have to give it the benefit of the doubt.
Maggiore: Now, when you say the effects are “catastrophic,” are you referring strictly to your patient population? Because it seems to me these are people who face unusual life challenges, certainly not the life challenges that someone like myself would face. Is that an equalizing factor between an upper-middle-class housewife and the indigent, perhaps drug-addicted person who has not attended school and has trouble meeting their basic needs? Would HIV be that equalizing factor between them?
Dr. Dee: Yes, yes. Unfortunately, the patients who come here probably have more challenges, and that’s why we do get patients presenting much later in the disease here.
Maggiore: I see. And again, what is “denialism,” and what is a “denialist”?
Dr. Dee: A denialist is a person who doubts that HIV causes AIDS, or that AIDS can cause opportunistic infections and death. So there’s a whole spectrum of it.
Maggiore: So they’re not “denying,” they’re “doubting”?
Dr. Dee: The doubters would also fall into that category. There’s a whole spectrum. There are people — of course, they would deny it — and then there are the people who doubt it and hence won’t do anything about it. So they, from what I understand, all fall into that “denialist” category.
Maggiore: Is there anything that defines the difference between a doubter, someone who’s asking questions, and someone who you would put in that [“denialist”] category?
Dr. Dee: There are people in the denialist category who don’t seem to be as open to more information, or to hearing about other data that may refute their beliefs, and definitely those people are the most challenging. Unfortunately, sometimes, no matter what we do, we can’t change someone’s mind. People have a right to think however they want, and it’s my belief that they can determine their own futures, but when there’s an innocent child involved, then it gets much greyer.
Crowe: Can I ask about another category of person? Let’s say that somebody’s said, “O.K., I accept that HIV causes AIDS, but I’m also aware that if a mother is untreated there’s only a 25 percent chance of transmission, and I’m also aware that the drug AZT interferes with DNA synthesis, and has been associated in animals, anyway, with cancer and mutagenic effects and also birth defects. And there’s some evidence in humans as well of some of these problems.” How would you respond to a person like that?
Dr. Dee: I’m glad, actually, that she looked into the drug, because at least she shows interest in what’s going on. So I wouldn’t refute that. You know that with women who are pregnant, we try to minimize any external drugs that we give them in any way, so it is not without a warning that we would recommend drugs anyway.
We would try to provide her with whatever data that we have, because AZT has been used for quite a while and it’s been used pretty much all over the world in pregnant women. In this country we don’t just use AZT in pregnant women anymore. That’s what we call “monotherapy.” We try not to do monotherapy anymore, for her sake and the child’s sake.
But we do monitor these women very carefully. Here at L.A. County/USC we have a program for pregnant women who are HIV-positive. They get delivered by a specialist who just delivers HIV-positive women. And our negative rate is tremendous here. We follow these children as they age, and thankfully I think we haven’t had any positive babies in women who were known to be HIV-positive going into active labor. So that’s why, as I told you before, how happy I am when patients are receptive to information.
Crowe: But what if they’re not? I mean, that’s getting back to the Law and Order [episode]. A woman says, “Thanks for all this information — ”
Maggiore: Actually, I think the situation on Law and Order was more like a woman had been misled by a medical professional.
Dr. Dee: Unfortunately, there are a lot of providers out there, and the degree of knowledge about HIV varies greatly. And unfortunately, if you go on line you’ll see providers who are actually in the denialist camp as well.
Maggiore: How does one distinguish a provider who’s in the “denialist” camp — getting back to that question I keep asking? Is there a “Wanted” poster? Is there a list of requirements? Are there things you can check off, and if you get to 10 they’re a “denialist”? I mean, how do we get to that point?
Dr. Dee: So what would happen is you have to be well informed going into the doctor’s office. First of all, you have to make sure your doctor is up to date with current information, if possible. Patients have to do their homework. They have to look doctors up any way they can. Usually, there are a lot of sources on the Internet as well where you can look up your own physician to see what patients have said about their doctor. They can get information that way.
Most pregnant women interview different doctors to see who they want. During that interview, you can usually get a flavor of how he or she practices. HIV in pregnancy is always a big topic, because HIV testing is strongly recommended for pregnant women. And if a doctor doesn’t even recommend it, you know that something is up.
Maggiore: What if a doctor recommends it and a patient says, “I feel I’ve informed myself on this, and I respectfully choose not to consume that drug during my pregnancy.”
Dr. Dee: Oh, so she did turn up positive, or she didn’t take the test?
Maggiore: No, this person has taken the test and comes in knowing they’re positive, having done quite a lot of research, and says, “You know, I’ll hear what you have to say, and now I’ll present my questions,” and after a discussion — let’s say, a lively discussion — this person says, “I don’t feel comfortable taking these drugs during pregnancy. I see that they have very serious side effects, including mitochondrial DNA toxicities. I can experience diarrhea, nausea, vomiting, while I’m pregnant. I could suffer from hepatic disorders, kidney failure, loss of appetite, numbness of the mouth, sleep disorders. There’s bone necrosis — ”
Dr. Dee: Lipodystrophy, metabolic syndrome —
Maggiore: Exactly. I don’t feel comfortable taking these drugs.
Dr. Dee: What would happen in our institution is we have something called an ethics committee, which I think every institution has. The case would be brought and presented at one of the committee meetings, and recommendations about what would happen at that point would be made. Fortunately for me, I’ve never had to do that, because if patients don’t own up to their HIV, then they wouldn’t be coming to see me anyway.
So I have not had to deal with that situation, but if something like that did happen to a provider, he or she would most likely be presenting that case to an ethics committee, and part of the ethics committee, or most of them, would have a psychiatrist and would have someone from risk management. And, you know, they may recommend that further steps be taken.
Maggiore: What might these steps be?
Dr. Dee: Further steps would, unfortunately, be legal steps, in which social work would get involved. As part of risk management, I’m sure we have a team of lawyers. Of course, I’ve never worked with them like that, but they would determine if they need to go to a judge and force adherence to a regimen. But there are a lot of factors involved, and sometimes the patient, the woman who’s refusing treatment, may be required to undergo a psychiatric or psychological evaluation to make sure that she is capable of making a decision like that. That would just be one thing that could happen.
Maggiore: Is there any other field of medicine where if somebody says, “You know what? Those therapies that you’re offering, they seem like they might be just as bad as the disease,” that person there, expressing themselves as well as I am today, would be subject to a psychiatric evaluation nonetheless?
Dr. Dee: Actually, it gets more complicated than that, because if you’re feeling well — and, of course, we do labs on people who feel as well as them — we’re not starting HIV meds in everyone who has HIV. There are other criteria that we look at. Actually, we’re very happy when someone has HIV and they’re feeling well, because most likely their numbers are good, too, in which case, we would not even recommend starting therapy.
Maggiore: But if they’re feeling well but their numbers indicate otherwise?
Dr. Dee: Yes, if their numbers are bad and they’re feeling well, they still have a right to refuse. It’s very unfortunate, but I can tell you that we do have a number of patients here who feel well, and their numbers start out good. We do request to bring them back on a regular basis to check on them, and some of them come back the way they’re recommended to. We check their labs and, unfortunately, the immune system starts waning and the amount of virus in them starts increasing, sometimes gradually, sometimes rather rapidly, and they have a right to refuse therapy.
And, unfortunately, we do sometimes have to watch them die. They have a right to decide what they want to do. We do counsel them, and we do make judgments on whether or not they’re able to make that decision. It doesn’t always warrant a visit upset to our psychiatrist or a social worker — although every patient gets a social work visit — and sometimes they just decide that they would rather live with the consequences of not treating themselves. And they fully understand. These are patients who even know what’s going to happen to them, and that’s what they choose.