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.

by Celia Farber

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 "mono therapy" (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.

GRIEVOUS ROAR

An HIV-positive mother in Oregon almost loses custody of her baby because she resists giving him AZT and wishes to breast-feed him. Impression looks at the continuing attack on families in the name of HIV heroica.

Welcome To The Machine by Celia Farber

The diabolical brilliance of the HIV-AIDS paradigm is that it lies in wait, invisibly, quietly, then closes in like an ocean net. The net is comprised of a chicken-shack belief system -- never solidified or validated, yet passionately adhered to by its disciples: AIDS is caused by the retrovirus HIV. AIDS is always fatal. HIV must be fought and killed.

The place where the AIDS machinery with its manic dictates intersects with the American (in the idealized sense of the word) public is where the story really gets interesting.

Consider the case of the Tysons, a straight-arrow American family living in Eugene, Oregon.

David Tyson had two children from a prior marriage, now teen-agers, and he and his wife, Kathleen, had one child together, now 10 years old. Kathleen discovers to her surprise that she is pregnant, and the couple adjust to the idea of another child. They are happy. They seek out a midwifery clinic where they want the baby born and set about tending to all the details of a new baby.

Technology being what it is, lots of tests are run. Kathleen, 38, in her seventh month of pregnancy has her blood drawn. She and David have been monogamous for more than 13 years. She is healthy. In fact, she is a runner. Her 10-year-old daughter is healthy. David is healthy. Nothing to worry about.

The phone rings.

A concerned voice summons them down to the clinic. They ask David to remain in the waiting room while they take Kathleen in to the office and deliver the shattering blow. She is HIV-positive. They give her all the room she needs to cry. They give her tissues. They give her advice. No, they give her orders. The Tysons are in the net now. Kathleen is placed on a multidrug cocktail of AZT and a few protease inhibitors. Each of the three or four drugs she forces down daily have been contraindicated in pregnancy. They are all mutagenic, teratogenic and carcinogenic. ("Teratogenic" stems from the Latin root ''teratos,'' which means monster.) AZT, as we know, gets delivered for research purposes in bottles bearing labels with a skull and crossbones and dire warnings of what to do if one were to accidentally ingest it. (Call your doctor!)

But throwing all post-Thalidomide prenatal conservatism to the wind, we have now careened from giving nothing, not even an aspirin, to pregnant women, to giving cocktails of experimental, toxic drugs to pregnant women. Only, of course, in the event they harbor antibodies to the dreaded HIV.

So Kathleen, after recovering from the shock, goes and gets her pills and takes them at a whopping cost of almost $300 for a 10-day supply, which the Tysons have to borrow money to pay for. Not surprisingly, she feels very sick all the time.

She wonders how it is possible for doctors to give all this to a pregnant woman, but she shrugs off her doubt because they must know what they're talking about.

But then she opens a door of perception, by sheer fluke, that tumbles her into the other side of the AIDS war. A copy of Mothering magazine peeks out from a rack in the local health-food store, and she spots the headline ''AZT Roulette.'' (I was the author of that article.)

Now she reads that there are questions, that HIV tests can cross-react, that most mothers don't transmit HIV anyway, that even if they do, it wouldn't necessarily lead to a sick baby, that AZT is dangerous to a growing fetus, and that there is no evidence whatsoever for the widely held belief that HIV transmits through breast milk.

Kathleen and David log on to the Internet and start their odyssey of research. They find Peter Duesberg's Web site; they buy Robert Root-Bernstein's book Rethinking AIDS. They read, they call around, they go to the library, and finally, they arrive at a conclusion: They decide to treat HIV as though it were a dull, ordinary, harmless passenger virus in an otherwise healthy person. After all, Kathleen's body had shown no sign of damage after what is supposedly a 13-year-old HIV infection -- her T cell counts are perfectly normal, and her ''viral load'' is almost undetectable.

Two weeks before her due date, Kathleen goes into labor, and winds up needing an emergency Caesarean section. Felix Tyson was born on December 7, 1998, and weighed 7.7 pounds.

''The first thing was, they tried to give Kathleen IV AZT during the delivery,'' says David, on the phone from the Tyson home. ''I stopped that.''

As Kathleen was recovering, she was visited in the hospital by an infectious-disease pediatrician with a very unpleasant bedside manner who started talking about the ''protocol'' for women such as Kathleen, which is AZT for the baby for six weeks and no breast-feeding. Kathleen said no thanks.

"We told her that we had done a lot of our own research and concluded that that was not the course of action we were choosing because it seemed risky, and we didn't know what the long-term effects of AZT would be on our son,'' Kathleen says.

The Centers for Disease Control and Prevention specifies in its recommendations that: ''Discussion of treatment options should be noncoercive, and the final decision to accept or reject AZT treatment recommended for herself and her child is the right and responsibility of the woman. A decision not to accept treatment should not result in punitive action.''

But in the real world, here's what happened: The pediatrician went ''ballistic'' and started railing against the Tysons and Peter Duesberg and finally issued a threat. ''She said she was going to have to contact … the ethics board,'' recalls Kathleen, ''and the lawyer of the hospital.''

In tears, Kathleen asked her to please leave and called David in a panic.

"When I got the call from Kathleen,'' David says, ''her voice was so distorted with terror and emotion that I didn't even realize it was her. I thought it was my 16-year-old daughter and that somebody had beaten her up or something terrible had happened.''

He raced to his daughter's house nearby and only then realized it had been Kathleen on the phone. When he got to the hospital shortly thereafter, he says, ''They had cordoned off the maternity ward to make sure we didn't escape.''

"And these guys had guns,'' says Kathleen, sounding as if she were retelling a bad dream. ''They had guns -- in the hospital on the maternity-ward floor.''

''I went over and looked out the window,'' David says, ''and down one story was a terrace. I considered ways of tying the bedsheets together and transporting my wife and one-day-old baby boy down there, getting down to the ground and escaping to the winter hills -- just to get away from that hideous, sterile, fascist institution.''

Welcome to the machine. In walks the petitioner from juvenile court and a police officer, serving the new parents papers stating that they must appear in court two days later to face charges that they had an ''intent to harm'' their baby by resisting giving him AZT and by wanting to breast-feed.

"I got a little crazy at that point,'' recalls Kathleen. ''I think I told that woman she was insane.''

"That woman's demeanor was right out of a Kafka novel,'' says David, ''like in The Castle, where the fellow is encountering the bureaucracy. She was really grim.''

The SWAT team stayed in the room until the Tysons had agreed to their demands -- AZT and no breast milk.

''At this point, I was just hysterical,'' Kathleen says. "I was hitting the buzzer and telling the nurses to bring the formula in and that we'd start then and there.''

"They acted like they were going to take him, take Felix,'' David says.

Child welfare authorities had been contacted at that point, and they had already taken legal custody of Felix, in total violation of the CDC's own recommendations and on the strength of the one histrionic infectious-disease pediatrician.

But luckily, the Tysons were permitted to keep Felix in their care for the time being under close supervision of the state. Even though Kathleen had surrendered completely to their dictates for fear of losing her child, the nightmare was not over by a long shot. ''It didn't matter,'' says Kathleen. ''The wheels were already grinding. ''

Three days later, they all appeared in juvenile court, where the court had appointed an attorney for each of them: Kathleen, David, and baby Felix. '' Yep, Felix has an attorney,'' says Kathleen with a wry chuckle.

They were ordered to administer AZT to Felix for six weeks and not breast-feed. A social worker visited their house on a regular basis to observe them giving Felix the AZT. Now the course of treatment is over, but the social worker still comes regularly. ''He told us that Services for Children and Families doesn't like this case at all. They know we're good parents.''

The Tysons have been deluged with support from around the country and around the world. AIDS dissidents, united recently by the Valerie Emerson case, jumped right into action to help them. Even though Felix has now tested negative for HIV, the Tysons' battle is not over.

"I'm still ordered not to breast-feed,'' Kathleen says. ''I need to have the right to feed my son the way I see as best, and he needs to have the right to get his mother's milk.''

The Tysons tried in vain to solicit help from various organizations, even the American Civil Liberties Union, but nobody would touch this.

Still, they have vowed not to give up fighting for the complex underlying principles of all this -- not only freedom or parental rights but also medical sanity and scientific integrity. The Tysons' 10-year-old daughter (along with Kathleen herself) is another example of a case that adds strength to the argument against HIV as a fatal virus. Neither one, despite Kathleen's supposed long-term exposure to HIV, have been affected in the slightest. They are in perfect health. And Kathleen breast-fed her daughter for almost three years.

"I just look at my daughter, and I say 'You're wrong; you're wrong about this theory that HIV spreads through the breast milk.'"

Kathleen had her daughter tested for HIV antibodies -- she was negative as is David. ''It just continued to not make any sense,'' says Kathleen, ''their whole take on it. When I went to the HIV Alliance … they always like to remind me … you shouldn't forget that you have the virus in your blood, and once you have that you're never OK. You never know when it's going to hit you. It's such a fatalistic attitude; it's no wonder people get sick from it.''

The Tysons' nightmare is a familiar one in a futuristic society that has abandoned reason and even compassion in the all-consuming fight against a dubious retrovirus that thousands of AIDS patients don't even have. The difference between having rights and freedom and having none is the difference between shades of gray bands on an antibody test that is not particularly reliable. ''What if his test comes back positive at four months?'' Kathleen says. ''We want to know that no one can force us again to give AZT to him, no matter what the outcome is. Felix is a vigorous, healthy, strong, beautiful baby.''

''We are going to fight this thing,'' David promises, ''tooth and nail.''

Baby Felix gurgles into the phone.

Celia Farber covers AIDS for Impression.

by Marnie Ko
The Report Newsmagazine 11-08-1999

The women have little in common, except that they are all mothers and are all HIV-positive. One is frantic; her children have already been seized by the state. The second is in hiding with her two infants, ready to flee at a moment's notice. The third mother is haunted by the heart-breaking decision to abort her baby. They are part of a growing Canadian trend: Women intimidated by doctors and public officials into taking anti-AIDS drugs during pregnancy, and into giving these drugs to their newborns, even though there is no law compelling anti-viral therapies, and strong reason to think they do more harm than good.

The first mother, Sophie Brassard, 37, is waging a legal battle to prevent doctors from drugging her HIV-positive children. In August, a court order removed the seven-year-old and his three-year-old sister from Ms. Brassard's Montreal home and placed them with her parents. After the grandparents expressed reservations about drug therapy, the children were put in a foster home on October 22. Five days later, social workers placed both children on anti-HIV drugs at least until the case resumes later this month in Quebec Superior Court.

The second woman, a 29-year-old B.C. mother of two, has been in hiding in Alberta with her sons since September. She ran after social workers demanded she surrender her nine-week-old and three-year-old boys for HIV testing. The soft-spoken European immigrant took anti-HIV drugs only once in 15 years of being HIV-positive, for less than a month. "I've never been so sick," she says. "The drugs made me nauseated all day long and constantly exhausted. I stopped taking the pills and felt better almost immediately. I've been healthy ever since."

The third woman is a 35-year-old from Montreal who was just a few weeks pregnant when her doctor began pressuring her to take anti-viral drugs, and warning that her child would be seized at birth if she refused to give the newborn AIDS cocktails. She spent several weeks agonizing over what seemed an impossible choice: a life on the run, or losing her child. In September, she aborted her baby.

Most people accept conventional theories of AIDS and are surprised that anyone would reject anti-viral drug treatments, but a growing body of scientists believe the medical orthodoxy is wrong. The dissidents include Kary Mullis, who won the 1993 Nobel Prize in chemistry for inventing the polymerase chain reaction used to test for HIV. Another is University of California-Berkeley scientist David Rasnick, president of the Group for the Scientific Reappraisal of the HIV/AIDS Hypothesis. Formed in 1991, it is supported by more than 2,000 scientists and doctors. "AZT and other anti-virals have horrible side effects," says Dr. Rasnick, an expert on the protease inhibitors that are mixed with AZT to make AIDS cocktails. " They are DNA chain terminators; they kill all living things. If these women and children take these drugs religiously as prescribed, they will die."

There's no disputing the drugs' toxicity. Pharmaceutical company Glaxo Wellcome warns against confusing AZT's side-effects, which include dementia, muscle wasting, severe immune deficiency, diarrhea, life- threatening anemia and birth defects, with AIDS itself. In 1994, the Journal of Acquired Immune Deficiency Syndrome and Human Retrovirology detailed an alarming incidence of therapeutic and spontaneous abortions among mothers on AZT, and a 10% abnormality rate among live births. The grotesque defects included holes in the chest, misplaced ears, misshapen faces, heart defects, extra digits and albinism. Meanwhile, an Italian study published this year in the journal AIDS concluded children born to mothers taking AZT were much likelier to get severely sick and die by age three than those born to HIV-positive mothers not on AZT.

Conventional AIDS researchers resist any suggestion of the inadvisability of anti-viral drug treatments. Dr. Philip Berger, an AIDS specialist at St. Michael's Health Centre in Toronto, says that he doesn't know "anybody" credible who questions AIDS dogma. "Well, maybe some guy who won the Nobel Prize," he allows. As for side-effects, Dr. Berger acknowledges only relatively trivial consequences like tingling in the limbs, redistribution of body fat and rashes, which he says occur only "in a minority situation."

The woman hiding in Alberta is unpersuaded. Explain why people like her remain healthy, the mother challenges. She believes it's because they didn't allow themselves to be used as guinea pigs for anti-HIV drug experimentation. And her family's bags remain packed and waiting at the back door, in case she has to run from the "AIDS police" again. "I'm not giving healthy children, even if they test HIV-positive, drugs that come in a bottle with a skull that has an X through it," she says. "It's crazy."

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