Document:A Mother's Love
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21 September 1998
After seeing her daughter Tia die horribly while on AZT, Valerie Emerson didn't want her four-year-old son Nikolas to suffer a similar fate. She was dragged into court because of her stance, and her legal victory comes as a watershed event in a climate of increasing medical fascism.
A mother recently, and amidst great controversy, won the right to refuse experimental medical treatment of her HIV-positive son. "My son is not a guinea pig," said Valerie Emerson of Bangor, Maine, where the decision came down in her favor last Monday.
The court decision made last Monday may alter the course of history for women and children who test positive for HIV. The Maine Department of Human Services had tried to take four-year-old Nikolas Emerson from his mother, Valerie, and place him in state custody because she refused to allow him to be treated with a "cocktail" of AIDS drugs.
Emerson had finally rejected conventional AIDS therapy, after her daughter died horribly while on AZT, after she herself took a turn for the worse on it, and after Nikolas suffered terrible side effects while on AZT for ten weeks. A doctor, suspicious of Emerson's questioning of medical authorities, suggested that Nikolas be part of an aggressive drug therapy trial, and when she refused, reported her to the Department of Human Services.
Emerson had stopped giving her son AZT because she believed it would kill him, and she felt that the new experimental drug cocktail would also harm Nikolas. After a one-day hearing at which medical experts for both sides testified, a judge dismissed the petition, ruling that her decision constituted not "medical neglect" but rather "informed choice."
Two "dissident" expert witnesses helped win Valerie Emerson's case – New York City's Dr. Roberto Giraldo and San Francisco's Dr. David Rasnick. Each flew in, refusing any stipend or even the standard expert witness fees, and testified about the severe toxicity of AZT and the newer AIDS drugs. When an attorney for the state asked Dr. Rasnick, a chemist and early developer of protease inhibitors, what his motivation was, the doctor answered point-blank. "To save Nikolas's life."
"When I first saw the mother," Rasnick told Impression, "she was trembling. Here she was, a poor woman, going up against the state. I put my hand on her shoulder and said, 'You're doing the right thing.' And she grew stronger and stronger, as her instincts became justified in the courtroom."
This case represents a stunning victory for the beleaguered AIDS dissidents – the ever-growing network of scientists, journalists, and academics who question the mainstream contention that HIV is the cause of AIDS. At the very core of the dissident critique is a rejection of toxic AIDS drugs – particularly AZT – that, dissidents argue, cause the very symptoms they are supposed to ameliorate. AZT, a chemotherapeutic agent, causes destruction of the white cells of the bone marrow – which is where the immune system resides. It causes a vast array of complications, and has been found to accelerate the death rates of AIDS patients, particularly children.
During the heyday of AZT, roughly 1987 through 1993, before the so-called Concorde study shattered AZT's monolithic reign on AIDS treatment, dissidents were accused of "murder" for turning people away from AZT, then described as "the only drug that could save people's lives." The dissidents, although frequently maligned as flat-earthers, cover a broad spectrum of opinion, and include such illustrious names as Peter Duesberg, who mapped the genetic structure of retroviruses, and Kary Mullis, who won the Nobel prize for his discovery of PCR (Polymerase Chain Reaction.) Their foremost concern has always been that people are being poisoned to death in the name of a virus that may be harmless, and based on research that is skewed beyond recognition by pharmaceutical funding and influence. In Maine, they had an important victory, because the court confirmed what they had been saying for years.
It was thanks to the intrepid efforts of HEAL Los Angeles president Christine Maggiore, herself HIV-positive and a mother, that the Emerson camp became aware of the mountainous dissident research that supported her case.
"The question the state was presenting was: Was it neglect to not give these drugs? But we won because they could not show that these drugs were effective," Emerson's attorney Hillary Billing said. "We are extremely happy, relieved, and grateful particularly to the scientists who helped us, Dr. Giraldo and Dr. Rasnick."
This decision comes as a watershed event in a climate of increasing medical fascism, which has targeted HIV-positive mothers, often threatening them with loss of custody if they fail to comply with medical regimens.
In the case of AZT, a crude, old chemotherapy drug which was shelved in the '60s because it was deemed too toxic for human use, there is no question that the drug is detrimental to children. The AZT-only arm of a federal pediatric AIDS trial had to be stopped in 1994, when the children on AZT started dying in scores from the drug's powerful toxicity. The rationale behind chemotherapy is that it destroys cells massively, in hopes of wiping out all the cancerous cells. HIV, by contrast, barely infects any cells, so AZT is mostly destroying healthy cells.
For years, mothers have been finding ways to beat the system, secretly flushing the drug down the toilet while pretending to the child's doctors that they are giving it. Zealous AIDS physicians have been known to report any mother who deviates from pediatric AIDS protocol, and many mothers have lost custody or been threatened with loss of custody for "medical non-compliance."
One mother in California was arrested by the police and threatened with the loss of her infant child because she still breast-fed despite her positive antibody status. Another mother, also in California, lost custody of her daughter for two years when she wouldn't give her AIDS drugs. (She had stopped giving her daughter the drugs because the child screamed and fought so violently whenever she tried.) She finally got her daughter back on the condition that she medicate her. Now, sources say, she never misses a dose.
After a vicious, hysterical battle on the merits of AZT raged for years between conventional AIDS activists, mainstream media, and the medical establishment on one side and AIDS dissidents on the other, AZT was finally disgraced after the exhaustive 1993 European Concorde study found patients who took it died faster. By the 1996 AIDS conference in Vancouver, the prescription of AZT was declared to be "medical malpractice."
But this total collapse in AIDS treatment ideology was never dwelled upon – instead AZT was instantaneously replaced with a new "generation" of drugs, the so-called cocktail drugs, comprised mostly of protease inhibitors.
The toxicity of these new drugs is also very severe, and their effectiveness is under serious debate.
As for AZT – sadly the stockpiled pills weren't dumped in a landfill. Rather, two new markets were found: Third World women, who are pressured to take the drug during pregnancy to prevent transmission of HIV, and pregnant women in the West.
Gay men were finished with AZT, and off to more sophisticated cocktail drugs. But one population got stuck in an AZT time-warp: HIV-positive women and their children.
The drama in Maine revolves around 27-year-old Valerie Emerson, mother of four children, three living. She, her ex-husband, and two of her children, Nikolas and her late daughter Tia, all tested positive for HIV. Ms. Emerson's oldest child and youngest child are HIV-negative. It was during a routine exam while pregnant with her youngest child, Zakary, that Ms. Emerson learned she was HIV-positive. Since 1984, it has been "standard of care" for HIV-positive women to take AZT throughout the last two trimesters of pregnancy, and to give it to the infant for six weeks after birth, a regimen said to reduce maternal transmission of HIV.
Ms. Emerson, in good faith, started taking AZT while pregnant. Some months later, a sonogram revealed that the baby she was carrying had the beginnings of brain tumors, and she asked the doctors whether this might be connected to the AZT. They said they did not know. (AZT is a known carcinogen, teratogen, and mutagen – and has been associated with both birth defects and cancer.) She decided to stop taking the drug, and six weeks later, there were no tumors.
One of the things that strengthened Ms. Emerson's case was that she had already played the game according to the establishment rules, and lost horribly. She had given Tia AZT, as well as a few other drugs, which were supposed to extend her life. Tia suffered acutely from the side effects of AZT, and died in January of 1997, just short of her fourth birthday. Ms. Emerson started to piece together a pattern – that both she and her children were fairly healthy until they started taking the life-saving drugs.
Nikolas was on AZT for two-and-a-half months, during which time he did not grow at all and suffered severe cramps, abdominal pain, muscle pain, night sweats, diarrhea and insomnia. He woke up screaming in agony during the night due to his severe muscle pain, a common side effect of AZT. His knees grew to twice their normal size, and he needed a blood transfusion because the AZT was destroying his bone marrow, also a common effect of the drug. Ms. Emerson felt that AZT was killing her son, and wondered whether it was the drug that had killed her daughter. She stopped the drug and all the symptoms were resolved immediately.
The real trouble began when the Emersons' family doctor, Dr. Jean Benson, recommended Nikolas for a clinical drug trial of three new AIDS drugs, (two nucleoside analogues and one protease inhibitor). Despite the fact that the leading experts in the field of pediatric HIV care had, by the spring of 1998, published their consensus that "monotherapy" (which is code for AZT) is an inappropriate treatment for children, Ms. Emerson still came under scrutiny for not giving Nikolas AZT.
Rather, the expert called in to examine Nikolas, (in hopes of getting him into the trial) had a "hunch" that he was not getting his AZT. This hunch was, according to the court judgment, "apparently steeped in distrust of this patient who had questioned the advice of medical experts, including himself..."
This doctor, John Milliken, a specialist in pediatric infectious disease, "wrestled" with the issue of whether this constituted child abuse. Three months later, having updated himself on the latest state of medical theory, he decided that it did. He wrote a letter to Dr. Benson, recommending the HAART (highly aggressive anti-retroviral therapy) for Nikolas, and stated that Ms. Emerson was "incapable of adequately managing medical care for her son and that her parental right to manage his medical care should be removed."
What triggered the litigation was Milliken sending a copy of the letter to the Department of Human Services. Dr. Benson was outraged by this, and felt her patient had been grossly mischaracterized. She testified that this mother was more involved in her son's care than any other mother in her practice.
The Department of Human Services invoked a second opinion, that of Dr. Kenneth McIntosh, a professor of pediatrics at Harvard Medical School, and Chief of the Division of Infectious Diseases at Children's Hospital in Boston. He said that although he did recommend the aggressive therapy, he did not think it wise to enforce it, and said he had never done so.
Ms. Emerson argued that to remove Nikolas from his home would kill him. The boy had never spent a night away from his mother, and the idea that it would be "beneficial" for him to be wrenched from his family so that he could be experimented on with unproven, toxic AIDS drugs, is too absurd for words. But it says a lot about the climate of pharmaceutical tyranny that swirls around HIV-positive people.
The judge's report was strongly worded, and summed up, unwittingly, the philosophy of the HIV dissident camp. "She [Emerson] feels that she has willingly and in good faith surrendered up the life of one child to the best treatment medicine has to offer and does not want to do the same with the next. Nikolas has made significant strides recently in gaining weight and overcoming developmental deficits, and appears happy and healthy. She does not want to see this child take on the pallor and pain of a sick and dying child."
In the "Conclusions of the Law," the judge states that the state may reasonably take custody from a parent in cases where a parent is withholding from the child, "necessary, available, and reasonably effective medical treatment for a life-threatening illness or condition." The judge then goes on to say that the question posed by this case was whether Ms. Emerson's decision to "delay drug therapy for her son is rational and reasoned. The court feels that it is."
At long last, the anarchic gas of "medical opinion" on AIDS was filtered through, not by a newspaper but a court – a place, at best, of reason. The judge's sober, rational decision came down squarely at the feet of the long-suffering minority of "irresponsible, murderous kooks," as dissidents have been called. At long last, common sense prevailed, two plus two equaled four. At long last, despite, not thanks to, the best efforts of the AIDS machinery – a life was spared.
The state has said that it will not appeal the case.
© 1998 by Celia Farber
Originally published in Impression magazine