Christine Maggiore Interviewed in MotherHood Magazine Mother Courage
An Interview with Christine Maggiore
by Kim Collins
“RELAX, IT’S ONLY INFORMATION.”
Like most people, I hadn’t spent much time thinking about HIV and AIDS. The issue hadn’t touched me personally, nor anyone with whom I’ve worked as a birth doula and childbirth educator. I had no reason to question the accuracy of HIV tests nor to contemplate the consequences of an HIV positive diagnosis. Then I was asked to interview a mother dealing with the death of her child for this issue of the magazine, and I was introduced to Christine Maggiore, author and mother of two.
I first became aware of Christine and the debate over prescribing AZT to pregnant women, due to a memorable 2001 cover story in Mothering magazine. HIV positive and healthy, pregnant with her second child (due just over a month before I was due with my second child), Christine appeared on the cover, her abundant belly emblazoned with the universal “No” symbol— a circle with a diagonal line through it—over the letters “AZT.” But somehow, I had missed the many interviews, sensationalized “Primetime” talk-shows and even plot lines in TV dramas that followed, often painting her as a lone, delusional voice on this subject for not only refusing to take the drug, but for questioning the entire HIV theory.
In preparation for the interview I started reading Christine’s book, What If Everything You Thought You Knew About AIDS Was Wrong. Immediately, I saw many parallels between her experience of being diagnosed HIV+ and childbirth in America; the lack of truly informed consent; the pervasive feeling that it’s not okay to ask too many questions or to say “No, thanks” to tests or protocols—tests that are sometimes flawed or have not been shown to improve outcomes—with matters only being complicated by healthcare economics.
An HIV statistical anomaly, Christine is a straight woman who has not abused drugs. She was a successful businesswoman who agreed to have an HIV test as part of her normal physical in 1992, at the age of 35, because it was the ‘responsible’ thing to do. Maggiore tested HIV positive and was told that she had five to seven years to live. In response, she became a public speaker and educator for several prominent AIDS groups.
About a year into her diagnosis, she retested at the request of a doctor who said she “didn’t fit the profile of an AIDS patient.” The result was a series of contradictory tests: indeterminate followed by positive, followed by negative, followed by positive. This unsettling experience caused Maggiore to question the accuracy of HIV tests and to ultimately question everything she was currently teaching people about AIDS.
In her research, Maggiore discovered studies published in the medical literature that showed HIV tests can cross react with antibodies to more than 60 different diseases and conditions including pregnancy, vaccinations and common viral infections resulting in “false positive” tests. She learned there is no universal standard for deciding what constitutes a positive result and no universal definition for AIDS.
In her book, Maggiore explains that the term “AIDS” is used to describe not one singular disease but a collection of long existing and common diseases, each with known causes—none related to the HIV virus—and established treatments. The diseases classified as AIDS change from year to year and vary from country to country.
She further explains that the probability of a false positive HIV test result, and the occurrence of the diseases grouped together as AIDS, are more common in areas where poverty—and all of the problems associated with rampant poverty—like unsafe drinking water, malnutrition, lack of basic medical care, and crowded living conditions, exist.
In spite of this information, Christine maintains that she is not on a crusade to recruit individuals away from a line of thinking that is working for them. Maggiore has said “...I can’t say the tests actually test for HIV or any [HIV] specific marker, but it might put [someone’s] mind at ease to take the test. This isn’t about deciding for other people, it’s about making information available so people can make decisions for themselves.”
Regarding treatment, Maggiore saw that people who were taking AZT and other drugs were oftentimes much worse off than those, like herself, who were healthy and drug-free. During the 18 months she served on the board of one AIDS group, “Women at Risk,” Maggiore witnessed every single woman on the board who was taking the drugs, die. AZT, the first medication given to people with HIV, was actually developed for and rejected as a cancer treatment. Its label carries a skull and cross bones warning. More current medications act by destroying enzymatic functions.
Along with others, such as acclaimed microbiology professor and author Dr. Peter Duesberg, Maggiore began asking whether the road AIDS research and treatment was careening down was really the right one after all.
No longer feeling a part of the orthodox HIV/AIDS community, she began her own organization, Alive & Well AIDS Alternatives (www.aliveandwell.org), a non-profit providing information to people who want to make informed choices about their health. As a result, Christine Maggiore became the poster child “AIDS dissident,” not a title she chooses for herself or her work.
Christine is married to award-winning filmmaker, Robin Scovill, who remains HIV negative after over ten years of latex-free sex. When she was pregnant with their first child, Charlie, now nine, she went to several OBs and was either turned away or told she had to take AZT and have a cesarean birth.
Though initially she thought the idea of a midwife “medieval,” Christine researched birth options “and decided [she] had to have a paradigm shift.” She went on to find an experienced midwife who supported her decisions to avoid AZT and other drugs, give birth normally and nurse her children. Of the experience Christine says, “I’m just so thankful…that the system tried to slap me down, and while laying there, I found some pretty cool stuff.” Charlie was born healthy in 1998. Their second child, Eliza Jane (EJ) was born, also healthy and normal, in 2001.
The family used Los Angeles pediatricians Dr. Paul Fleiss and Dr. Jay Gordon for their children, in addition to more holistic practitioners. Though aware that Christine had a positive diagnosis, the pediatricians never requested that the children be tested.
In the spring of 2005, at almost three and a half, Eliza Jane was under the weather for the first time ever with the stubborn cold going around school. She was seen by Drs . Fleiss and Gordon and then twice more by a pediatrician friend from out of state who was visiting. All three doctors pronounced EJ’s lungs clear, oxygen levels fine and diagnosed a simple ear infection.
After a few days when Eliza Jane’s ears didn’t clear on their own, amoxicillin (a common antibiotic) was prescribed by the visiting pediatrician, who examined Eliza Jane at home on Saturday, May 14. After the second dose, EJ vomited, a common side-effect of which the family had been made aware. Following the third dose, on day two of the regimen, Christine became concerned that EJ looked pale and was cold and asked Robin to call the doctor again. It was during this call that Eliza Jane collapsed and stopped breathing. Paramedics were called and revived her and then rushed her by ambulance to the hospital, where Emergency Room doctors ran exhaustive tests, including a CAT scan, two chest x-rays and a spinal tap in an attempt to
diagnose what was wrong.
After four hours in the ER, Eliza Jane went into cardiac arrest and was pronounced dead on May 15.
The EMT report said that cause of death was cardiac arrest, while the hospital attending physician suspected sepsis. With no explanation for her death, Eliza Jane was referred to the LA County Coroner for an autopsy. The initial autopsy report, filed by Dr. Changsri, found no cause of death. It did note that all of EJ’s vital organs were grossly enlarged with circulatory fluids, which would normally indicate a toxic reaction. After ten days of testing and no identified cause of death, the coroner’s office asked Senior Deputy medical examiner, Dr. James Ribe, to conduct an exam.
Four months later, Dr. Ribe finalized his report with the conclusion that EJ had died of AIDS-related pneumonia.
The family was alarmed and surprised at this conclusion, given that EJ’s initial autopsy report and x-rays had shown no physical evidence of pneumonia. Learning that an investigator from the LA County Coroner's office had asked Dr. Fleiss if he knew about Maggiore’s book and her position on HIV, caused Christine and Robin to speculate that Eliza Jane’s death was viewed as “AIDS by association.”
According to published reports in several Los Angeles newspapers, Dr. Ribe has been the subject of several reprimands by the District Attorney, and also subject to credibility challenges over his autopsy conclusions and court testimony in other cases.
Looking for answers, the family arranged to have Dr. Mohammed Al Bayati, a board-certified toxicologist and pathologist, review EJ’s autopsy report. (Dr. Bayati is on the advisory board of Alive & Well AIDS Alternatives, Maggiore’s non-profit organization.) He concluded that EJ had died from a fairly rare form of delayed anaphylactic shock in reaction to the antibiotics. Supporting his conclusion was the amount of displaced fluids in EJ’s body, consistent with toxicity. In his opinion the sepsis caused multiple organ failure culminating in cardiac arrest.
A media storm ensued when Dr. Ribe’s unreleased report was leaked to The Los Angeles Times. The article announced that Maggiore and Scovill were being placed under criminal investigation for negligence. Anticipating custody of son Charlie being jeopardized, they had him tested three times—once at home, once with Dr. Fleiss and once at Dr. Gordon’s lab—and he was found to be HIV negative every time, just as Robin was. Despite three negative test results and a record of perfect health and school attendance, the Department of Child and Family Services stated they would take custody of Charlie unless his parents agreed to a fourth test. After a fourth negative test, DCFS kept the case open for several months before investigators were satisfied that Charlie was healthy and safe.
The original autopsy report from the LA coroner’s office stated that an HIV test was done but did not include the results. Despite numerous requests by Maggiore’s attorneys for lab evidence of her daughter's HIV status, the coroner’s office has refused to provide this “absent a subpoena.”
Regarding the cause of her daughter’s death, Maggiore has said, “Essentially, the way it’s been explained so far is that my daughter was remarkably immune suppressed but managed somehow to show no signs of that during the first three years and five months of her life. Then, suddenly and unusually, she developed an unseen, undetected case of AIDS pneumonia that even at her autopsy couldn’t be found. There’s a leap going on here that I’m not prepared to take. I want more information.”
For many touched by HIV, having one’s orthodox assumptions challenged —what we have come to regard as givens in our national life—can be been life-changing and even life-saving.
Christine Maggiore and her family continue to fight to clear their names, having brought a lawsuit against the LA County Coroner’s Office. Friends help maintain a website, www.justiceforej.com, where reports, interviews and updates can be found. Hate mail and scathing blogs have been balanced by support from celebrities, like HBO’s Bill Maher and the rock band Foo Fighters, academics, doctors, and average people just touched by the story.
Christine remains healthy fifteen years after her original positive diagnosis—without the use of AIDS drugs. She and Robin continue their work and are upheld by a community of friends and neighbors as they raise their son Charlie and remember their brief, but blessed time, with Eliza Jane.
Underneath the story of Christine’s journey as a person who has tested HIV positive and her advocacy work on behalf of all those testing positive there is, finally, the story of a mother losing her child.
Where does she get the daily courage to continue her work and her life? Below is a small portion of my interview with Christine at her home in Los Angeles, conducted over the phone and through e-mail.
TMH: Losing a child is hard to think about or imagine. What keeps you going? What keeps you sane?
Christine Maggiore: Survival went from a moment to moment occurrence—I can’t even use the word decision as it happened without my will or desire—to an hour by hour, and then day by day struggle, with blinding pain and bottomless despair. At first, it felt like the only reason I didn’t die was that my heart kept beating. It was very hard to want to stay alive. The beautiful spring days following EJ’s death were like an assault. Nights were torturous. I’d sit outside for hours in the darkness, feeling hollow and alone. For weeks, I couldn’t breathe.
But my son was my north star and my husband was like my compass, they kept me from becoming lost in sadness. And we had so much help from friends, some of whom we didn’t even know until after Eliza Jane died. For many weeks, our house was always full of life and love. People brought flowers and food, stayed late into the night, checked on us every day, made us
dinner, made music, helped us laugh, let us cry, and shared stories of their own losses and survival. Robin, Charlie and I held on to each other while they held us.
When the media storm and police investigation started up four months later, we had a shelter of love and friendship built on the foundation of our truth. As time went on, I met intelligent, capable, compassionate mothers who had also lost children. I found them through friends and teachers at our school rather than in a support group. Knowing these women and their stories has helped me to understand that I am not on this path alone, that I, too, can reconstruct my broken heart and survive. I also understand that the absence becomes its own presence, that the pain will always be there and that I will learn to live with it.
Books have been of great help and comfort, in particular On Grief and Grieving, by Elizabeth Kubler Ross, Journey of Souls, by Dr. Michael Newton, and Expecting Adam, by Martha Beck. Since I couldn’t speak to any of my friends about Eliza Jane once the police investigation began and I couldn’t afford a therapist, I found a counselor who allowed me to defer payment. And here’s an example of some of the magic EJ brings to my life: after several weeks of seeing this therapist, I learned she lost a four year-old son named Charlie who was born in December like Eliza Jane, and who died in May, the same month as EJ. I also learned that she specializes in cases involving legal and police matters. I found the perfect therapist by chance, by taking a chance. Some words of advice given to me: Be open to the magic of life and it will find you.
TMH: You have stated in other interviews that you have no regrets and have not questioned your convictions as a result of EJ's death. This speaks to me of incredible personal strength—where do you think this strength comes from? Did you always have it?
CM: Regarding strength, I think we can all call forth tremendous strength and power when we need it. Finding that strength and power when your heart is shattered and everything seems impossible is the hard part, but it’s always right there. I think you have to make yourself step forward despite the fear and the darkness with the faith that the path will be there and light will come.
I don’t believe I have “convictions,” I believe I have knowledge about HIV and AIDS that remain open to challenge and correction. What tests my strength in this regard are people who make cruel comments and uninformed statements about my daughter’s death and, after speaking out, won’t engage in conversation or even answer questions. If my daughter’s death has proved anything to me about HIV and AIDS, it’s that reason and even decency are utterly absent from most discussions on these topics.
As far as regrets, I do not regret for a second that I declined the dictates of the AIDS mainstream with regard to toxic drugs, C-section births and formula feeding. As you may know, the coroner’s office has refused to provide us with laboratory evidence of Eliza Jane’s HIV status and, despite ideas about so-called HIV transmission, my son Charlie and my husband Robin both test negative. It’s important to understand that they took tests only after it became apparent that our lack of participation in mainstream medical practices was being viewed as criminal behavior. I still have seen no indication there are HIV tests actually approved by the FDA for the specific intended purpose of diagnosing infection with HIV or any tests that have been
validated by the direct isolation of HIV from positive testing individuals.
I absolutely regret not recognizing that EJ was having an adverse reaction to the antibiotic and not being able to save her.
TMH: Growing up, who influenced you to think so independently?
CM: From an early age, my father encouraged us to stand up for what we think is right, even if we’re the first or only ones standing. I think our children learn a lot by seeing us help, speak up for and protect ourselves and others, especially when it’s easier to be quiet, give in or turn the other way. Another valuable lesson my Dad taught by example: Be open to change and be able to be wrong.
TMH: Do you view your journey since your original HIV test as a blessing, curse or neither?
CM: I think it’s a blessing any time we learn, grow, create new possibilities, and connect and share with others. Through my work in this area, I’ve met so many remarkable people and have had so many extraordinary adventures, like spending time in South Africa with President Thabo Mbeki and with Winnie Mandela and her family. Charlie and EJ’s first experience of snow was when I did a TV show in New York. Charlie loved our recent trip to Mexico City, where I filmed three news segments for national television…testing positive has made for a different life and more challenging life than the one I expected but a full and beautiful one, nonetheless.
TMH: Professionally and personally, has the death of EJ resonated in terms of how others with whom you work(ed) closely treat you? Have any sources of support disappointed or pleasantly surprised you?
CM: Professionally, I haven’t encountered any person or group whose view of me became tainted by my daughter’s death. The people and groups from any area of my life that disparage me are ones with no direct knowledge of me or my family. So, while it hurts that people talk or write about me as if I’m a fool or criminal, I recognize that those who do so are not well informed.
Countering that is all the support and encouragement from people I’ve never met who reach out to me after discovering the media response to my daughter’s death. One example is an invitation to speak for an association of journalists in Washington, DC. They think my experience exemplifies a modern day version of a witch-hunt.
TMH: I assume you and your husband, Robin, have made decisions together yet he is seldom mentioned in regard to your health decisions and EJ’s death. Why do you think the “story” is so focused on you, the mom?
CM: I think the stories focus on me for obvious reasons like I’m the one who tests positive and lives in health without the supposedly necessary, allegedly life-saving medication, and I’m the one who wrote the book and birthed the children, and I believe the focus is also singular for subtle reasons such (as) suggesting I stand alone, that I am an anomaly, unsupported personally or professionally or scientifically, which is not at all correct but creates more drama and poses far less challenges to mainstream beliefs.
TMH: In terms of protecting our children against allergic reaction to antibiotics, what have you learned?
CM: I learned too late that there are over 70 citations in the medical literature to adverse reactions caused by amoxicillin—including death—and that amoxicillin is among the top five drug reactions that prompt emergency room visits in the US according to a recent news article that appeared in the Los Angeles Times.
TMH: I’ve read your advice to pregnant, birthing and nursing women who may be uninsured or needing public assistance and how that can complicate matters. What advise do you have for woman and families not facing those challenges, but who can expect to have less and less choice about HIV and other medical testing/medical mandates?
CM: Become informed and stand up and speak out for informed choice. It’s the only way to maintain choice and prevent mandates for testing and medication for a variety of questionable conditions.
TMH: I understand that you are unable to speak freely about your pending lawsuit against the Coroner’s office, but is there any new information about the legal situation that you can share?
CM: Here’s what I can say: my husband and I have filed a law suit against the LA County Coroner’s office and deputy coroner Dr. James K. Ribe, whose conclusion that Eliza Jane died of AIDS stands in opposition to the physical evidence. In investigating our case with the LA County Coroner’s office, we discovered the cases of three people currently serving life sentences because of Dr. Ribe’s dishonesty. Our goal [with our law suit] is to shine a cleansing light on the LA County Coroner’s office in order to arrive at truth and justice for our family and for those three people wrongly convicted of crimes they did not commit.
TMH: If you could say just one thing to readers about HIV and AIDS, what would that one thing be?
CM: There is so much more to the AIDS issue than what we think we know and, unfortunately, the scope of acceptable discussion has narrowed to the point of strangulation of new ideas and different possibilities. Solutions to problems begin with open investigation and dialogue and are created through access to information. AIDS is a problem with no safe and effective solution and no open investigation or dialogue. I think we need to start from the beginning together to create solutions that can truly be of help to people.
EDITOR’S NOTE: On March 22, 2007, legislation was proposed that, if enacted, would make NJ the first state to mandate that all pregnant women and babies be tested for HIV. The legislation currently provides for an opportunity to opt-out of testing; women and families would have to put their refusal of testing in writing.
If this comes to pass, will you have all the information you need to decide what a positive HIV test means for you and your baby?
Join us on JUNE FIRST for a screening of Robin Scovill’s documentary “The Other Side of AIDS.” The discussion to follow will be moderated by Kim Collins and Michael Ellner, President of H.E.A.L. (Health Education AIDS Liaison) New York. For location and to RSVP, please email us at: email@example.com.
For more information on Christine Maggiore and this topic, go to:
Alive & Well AIDS Alternatives
To hear Christine’s own words as she speaks about Eliza Jane’s health, final weeks and death, go to: http://www.breakfornews.com/audio/
See back issue NO. 108, SEPT/OCT 2001.
The Group for The Scientific Reappraisal of the HIV/AIDS Hypothesis
Toll free: 877-256-6406
HEAL (Health Education AIDS Liaison)
New York City 212-873-0780
The National Vaccine Information Center: Founded 1982 by parents of vaccine-injured children:
Kim Collins, also known as DoulaMomma, lives with her husband and three sons in South Orange. A “reformed” attorney, she now teaches childbirth classes, counsels on birth options, creates belly casts, and works as a birth doula. Reach her at firstname.lastname@example.org.