Christine Maggiore Challenges Bioethicist Dr. Norman Fost

Dear Dr Fost,
I was given your email address by organizer’s of the event in Concord, MA to which you were invited at my suggestion to participate in a dialogue about AIDS and medical ethics. I’m sorry you will be unable to attend but am encouraged by the thought expressed in your reply to the group that there’s probably more to my story than what’s been featured in the media.
I would very much appreciate a chance to converse with you about the ethical issues involved in my situation. Would you be available for an exchange by email or perhaps a discussion by phone?
In response to your question about why I recommended you for the event, I am interested in examining ideas about ethics as they relate to HIV testing and read your comments on my case that appeared in Elle magazine.
With regard to Elle and to ethics, I contacted the editor, Lisa Chase, after noticing a disturbing number of errors in their article about me. Ms Chase asked me to provide her with a complete list which I did last week. I’m waiting to hear how Elle will handle what I regard as a lack of journalistic ethics. In case you’re interested, my communication with the editor Lisa Chase is below.
Looking forward to your reply,

Christine

Dear Ms Maggiore,
All I know about your situation is what I have read in a random selection of websites (and the information you have sent below). I would be interested in learning more but am on vacation this week. I have not seen the Elle article so if if it is convenient for you send that I would appreciate, along with any other information that would be helpfiul.
Best regards

Norm Fost

Dear Dr Fost,

Thanks for taking time from your vacation to reply.

I don’t have an electronic form of the Elle article to send you but the issue is current (Sept ‘06) and can be found in supermarkets, drug stores, newsstands, etc. The actress Lindsay Lohan is on the cover posing with a feather boa.

For general information on my daughter’s case, please see JusticeForEJ.com which is a site managed by a group in Canada. A student in Austria working toward her PhD in bioethics has included the case in her thesis, but I don’t know if that has been posted there as yet.

I look forward to speaking with you when your return from your holiday.

Safe travels,

Christine

As of early November no further replies were received from Dr. Fost, even after sending the information below and several follow-up emails.

List of Errors in Elle Magazine Article on Christine Maggiore

Major Errors

1. Reynolds states that “In all probability, Eliza Jane became infected with HIV during gestation, labor or breastfeeding,” when in fact, the autopsy report does not give Eliza Jane’s HIV status, and we have no laboratory evidence from the coroner of a positive HIV test, despite multiple requests for such evidence by our attorneys.
2. Reynolds states that the coroner found “strands of HIV’s molecular proteins throughout [my daughter’s] inflamed brain” when in fact, EJ’s brain was normal (not inflamed) per a CAT scan taken at the emergency room, per the findings at autopsy, per the autopsy report, and per a neuropathology exam included in the autopsy. Further, the finding of a single protein, rather than “strands of HIV’s molecular proteins,” was added as an amendment to coroner’s report four months after the original autopsy.
3. Reynolds claims that “the pathologists didn’t order an HIV test in the normal course of investigating the death of a white, middle class three year old–” as if race and income dictate diagnostic testing decisions. Instead, the coroner’s office stated that cases of unexplained death “are not routinely tested for HIV because AIDS is so obvious.”
4. Reynolds changes my definition of pneumonia from the correct one, “inflammation of the lung caused by disease,” to a medically incorrect interpretation, “swelling of the lungs,” and falsely attributes this mistake to me. The correct definition is crucial to the story as my daughter’s autopsy report states that medical examiners found “no inflammation” of her lungs, thereby ruling out pneumonia at autopsy. Reynolds compounds this error by omitting a correct reference to swelling, that is, that the autopsy notes swelling of all my daughter’s vital organs, a hallmark of toxic reaction, especially in lungs described at autopsy as having “no inflammation.”
5. Reynolds claims my daughter endured “a day of nausea, vomiting and wheezing,” before she died, a description of events that is not in 911 transcripts; in medical, EMT or hospital records; in my testimony included with the autopsy report; or in my interview with Reynolds. Please note that the error about “a day of vomiting” was specifically corrected during the fact check yet appears in the article nonetheless, and the unsubstantiated allegation that my daughter was also “wheezing” and had “nausea” was not mentioned during the fact check.
6. Reynolds claims that, “a number of pathologists have examined both the original autopsy and the alternative version. All have publicly concluded that the original was correct,” when disagreement with the original findings by pathologists and other medical experts appears in the public record. In fact, the “alternate version” of the original autopsy was published in a peer reviewed medical journal with an editorial board consisting of 10 PhDs and 12 MDs with whom I have no association.
7. Reynolds claims my response to the coroner’s September declaration was “an immediate–‘it’s not true!’” when in fact, my first public statement on the issue came during a December 5th broadcast of ABC’s PrimeTime, and did not contain the words “It’s not true!” (Per the program transcript: “I believe the unfortunate irony in this situation is that the one time we were asked to and that we complied with mainstream medicine, we inadvertently gave our daughter something that took her life.”)
8. Reynolds claims I “fought back” against the September declaration my daughter died of AIDS by hiring a pathologist. In fact, the pathologist’s request to receive a copy of the autopsy report was submitted to the coroner’s office in May, four months before the declaration was issued.
9. Reynolds claims “as soon as Eliza Jane had been declared dead, a large, unwieldy investigative mechanism swung into action” when in fact, the police investigation began several weeks after her death, and the Department of Children and Family Services was not involved until four months later.
10. Reynolds states that “DCFS closed its investigation after insisting that [my son] be tested for HIV or lose custody” when in fact, Charlie had three times tested HIV negative prior to the DCFS investigation. As reported in the Los Angeles Times, “After reviewing recent test results from three labs showing that the boy is HIV-negative, the Los Angeles County Department of Children and Family Services is expecting to close its child endangerment investigation”
11. Reynolds claims, “When I ask [Maggiore] about the current HIV tests that isolate actual viral RNA, she dismisses them as meaningless, saying they reveal only ‘protein strands,’” when in fact, I cited the test kit’s disclaimer for Reynolds which states that it is “not intended to be used as a screening test for HIV or as a diagnostic to confirm HIV infection.”
12. In her “quick primer” on AIDS, Reynolds mentions that AIDS conditions occur when CD4 T lymphocyte cells are depleted, weakening the body’s ability to fight off infection,” but does not mention that my daughter’s total lymphocyte count at the time of her death was well above normal at 10,800, which is five times higher than World Health Organization’s guideline of 2,000 for giving a diagnosis of AIDS via total lymphocyte count (Costello C et al. Predictors of low CD4 count in resource-limited settings. J Acquir Immune Defic Syndr 39: 242-248, 2005).
13. Reynolds states that my daughter had “sores in her mouth suggestive of herpes” when the autopsy report makes no mention of sores of any kind in her mouth.
14. Reynolds writes that I looked into “HIV deniers–at the suggestion of a friend,” omitting the well known fact that a year into my positive diagnosis, I experienced a series of conflicting HIV test results that fluctuated between positive, negative and indeterminate, and that this prompted my investigation into AIDS science.
15. Reynolds quotes Dr Jay Gordon as saying, “I’m sure I urged [Maggiore] to have the children tested,” yet medical records show that Gordon did not discuss or order HIV tests for Eliza Jane or her brother Charlie, not even at an exam with Charlie two days after his sister’s death.
16. Reynolds writes that “At last on May 14 Maggiore called Philip Incao [to see Eliza Jane]” omitting a May 7 exam with Dr Incao that followed the visit with Dr Gordon. Reynolds also omits that at the May 7 and May 14 exams, records show my daughter had no cough. Instead she writes, “the child’s runny nose, cough and malaise lingered.”
17. Reynolds’ article leaves out why my daughter’s case was referred to the LA County Coroner’s office: A physical exam, two chest Xrays, a CAT scan, a spinal tap, blood work and other tests performed at the ER provided no insight into why Eliza Jane had died.
18. Reynolds omits mention of the fact that the credibility of Dr James K Ribe, the coroner brought in to resolve my daughter’s case, has been challenged by the District Attorney as well as in numerous judicial proceedings, or that Ribe is currently a defendant in a civil suit for having altered autopsy reports of several murder victims to conform to a confession later determined to have been fabricated by police.

Minor Errors

• A two-month pre-coital courtship with my husband is described as “they met, dated once or twice, had sex.”
• My two day wait for treatment of a faulty root canal is described as me “still being bothered by an excruciating mouth abscess” a year after my daughter’s death.
• My husband’s four-day trip to New York last year was described as him “spending long periods away from [home] in New York and elsewhere.”
• I am described as wearing a “cut off denim miniskirt” when I wore a skirt with a hemline that falls mid-knee.
• The article states, I “scheduled the appointment [for an abortion], arrived at the office, and then, at the last moment, uncertain, unsettled, left.” In fact, as I explained to Reynolds, a doctor halted the procedure after a pre-operation ultrasound mistakenly indicated I was 15 weeks pregnant.
• My husband is described as having “dark, unruly hair” when his hair is sandy blonde and straight.
• The article includes a fictitious scene in which I “set my son up with his homework at the kitchen table.” In fact, school he attends does not assign homework until third grade which he begins this fall.