OCTOBER 1998  

Maine Mother Wins Court Fight

Against HIV Doctors

Mom decides treatment, not HIV, causes AIDS;

State sought custody to impose coctail drug therapy

An HIV-positive mother in Maine won a startling and decisive September 14 court victory against the state's effort to take her four-year-old HIV-positive son into protective custody due to her refusal to treat him with anti-HIV drugs

Valerie Emerson, 27, of Bangor, Maine, had already watched her daughter, Tia, became fatally ill while consuming AZT last year. Valerie and her son, Nikolas, also became seriously ill while consuming AZT, but quickly regained their health after discontinuing it following Tia's death. These experiences made Valerie question the HIV-causes-AIDS model. After reading the work of Peter Duesberg, a UC-Berkeley virologist and RA Board member, Valerie concluded that HIV is harmless, and that anti-HIV drugs may be among the causes of AIDS.

When the doctors who had been prescribing AZT to her family next recommended "cocktail" therapy for Nikolas, Valerie refused. One of the physicians concluded that Valerie's decision jeopardized Nikolas' life, and reported the situation to Maine's Department of Human Services (DHS). Citing "serious parental neglect," DHS officials filed a petition to have Nikolas placed in state custody, where he would receive the treatments.

The court appointed a guardian ad litem to represent Nikolas. The guardian recommended in favor of the DHS's petition to remove Nikolas from his home.

A single mother living on government assistance, Valerie managed to hire local attorney Hillary Billings, for whom her sister Kim Sheridan works as a secretary. The court declared Valerie indigent, meaning state funds provide for one-third of Billings' normal hourly rate and will cover some other legal expenses. She's also assisted by a $2,500 loan from her grandparents and a $3,000 donation from a supporter who read about the case.

Billings called two expert witnesses, both from the RA Board of Directors: protease inhibitor expert David Rasnick and physician Roberto Giraldo. Rasnick and Giraldo testified that HIV is harmless, and that the anti-HIV drugs provide no benefits and cause a variety of serious illnesses, some of them deadly, and some that even fit the description of AIDS, the very conditions they are prescribed to prevent. They also testified that Nikolas would surely die if he followed the doctors' recommendation, but had an excellent chance to live a long healthy life if he stayed off the HIV drugs.

Although they were not questioned about the previous experiences the family had with AZT, Rasnick and Giraldo both told RA that had they been asked, they would have testified that Tia's death and the severe health problems experienced by Valerie and Nikolas appeared to involve AZT poisoning.

The state called several physicians who had examined Nikolas. They testified that HIV causes AIDS and that Nikolas would benefit from the treatment. Though they weren't asked about Tia's death either, Valerie told RA that they all blamed Tia's deterioration on HIV, not on her treatment.

In his decision rejecting the petition, Judge Douglas A. Clapp gave the competing views equal merit. He wrote that the DHS "has not sufficiently proved what the benefit will likely be and that no significant injury or harm may ultimately befall the child if that therapy is now commenced. The mono [AZT] therapy, which the best doctors told Ms. Emerson was appropriate for her daughter many months ago failed fatally and is now not recommended by the same experts. Instead, they have recommended a more aggressive and powerful therapy. They may be right in this advice. Current statistics can be interpreted that they may also just as likely be wrong. ...She has discontinued her own treatment with no apparent present ill-effects. She has observed an outward improvement in her sick son's condition with a discontinuance of drug therapy. The State of Maine is now in no position to tell her in the face of her unique experience that she is wrong in her current judgment... the current body of information available to any mother in her situation is limited or conflicting."

He concluded that Valerie's decision to reject the HIV drugs was "rational and reasoned" and did not "place Nikolas's health or welfare in jeopardy."

The DHS declined to appeal the case, but the guardian ad litem has arranged for a November 3 appeal before Maine's Supreme Court.

Valerie takes AZT while pregnant

Valerie received her first HIV test as part of routine screening while pregnant with Jacob, now two, the youngest of her four children. While waiting for the result, she heard from the estranged father of Zakary (then six), Tia (then barely three), and Nikolas (then two). "He said he was HIV-positive," Val told RA. "What a coincidence -- while I was waiting for my result. Now I was worried, since at the time I thought like everybody else that HIV causes AIDS and spreads like a venereal disease."

When her result returned positive, the family physician, Jean Benson, had the kids tested; Tia and Nikolas were positive, Zakary was negative. Valerie knew the father had a history of injecting drugs, and soon learned that he had homosexual experiences as well. She says she's never injected drugs (she has a history of cocaine use, but has been clean now for four years) and has no other official HIV risks.

Benson prescribed Valerie AZT, a cancer drug, which she started taking three-and-a-half months into the pregnancy to prevent maternal transmission. Valerie immediately developed a set of persistent problems common among canceer chemotherapy patients, but which Benson and other doctors blamed on her pregnancy: severe headaches, complete appetite suppression, massive hair loss, and pain in her calves that was so severe as to wake her in the middle of the night and send her to a hot bath for relief. An adult infectious disease specialist, Robert Pinsky, added a second AZT-style cancer drug, ddI, which he discontinued after three doses due to the "violent vomiting" that it caused.

Two months into the AZT therapy, Dr. Boley, a "high risk pregnancy" specialist brought in because of Valerie's HIV status, discovered cysts on the embryo's brain. Boley said he could do nothing about the cysts, that the cysts might go away or stabilize on their own, but that if they grew, they would cause problems for the baby. Valerie asked if the AZT might have caused the cysts, and none of the doctors could say for sure that it hadn't. So she discontinued the AZT, and the cysts disappeared.

As did every one of her own symptoms, within two weeks. Jakob was born HIV-negative and healthy, and remains so.

Daughter Tia dies on AZT

At the time of her HIV diagnosis, Tia had just turned three, and had already been hospitalized four or five times for bacterial pneumonia. The pneumonia bouts were brief and resolved within days during standard two-week antibiotic treatments. Prior to her HIV diagnosis, attending physicians expressed no alarm about Tia's recurrent pneumonia, telling Valerie that it "wasn't rare for small children since it was caused by airborne bacteria." When Valerie pressed them to explain why Tia kept developing pneumonia, they examined further and found that Tia had acute asthma. The asthma, they said, was responsible for the recurrent pneumonia, by choking the bronchioles and trapping the bacteria so that it had "colonized" in her lungs.

Valerie and the physicians -- Benson and others encountered during hospital visits -- were satisfied with this explanation until Tia tested HIV-positive. Then the physicians all agreed that Tia's recurrent pneumonia was really due to HIV having suppressed her immune system. They said this meant she had "full blown AIDS" and needed to start anti-HIV treatment immediately. So began the final year of Tia's life, consuming AZT against HIV, and other drugs (first Bactrim, then Septra) as prophylaxis against PCP (Pneumocystis carinii pneumonia), an opportunistic lung infection common among AIDS patients in some risk groups.

"The bouts of pneumonia then became more frequent and lasted longer," Valerie recalls. "She lost all appetite, saying her stomach hurt. She would eat only from the bottle. Some of the doctors said she was too old for a bottle, and I should take it away. When I did, she wouldn't eat anything, and would end up with pneumonia again. And she stopped growing. Pain all over her body incapacitated her. She couldn't walk, she could only lie down. She couldn't even move from the floor to the couch. We had to move her."

By the start of her ninth month taking AZT, Tia was emaciated. "We had to use pillows to keep her bones from touching each other," Valerie says. "She couldn't talk, and she was in so much pain she wouldn't let us touch her."

The physicians attributed all this to HIV.

A final bout of pneumonia (Valerie says it might have been PCP) began eleven months into Tia's AZT therapy. "The doctors said there was nothing we could do. They said we'd used up all the antibiotics on prophylaxis. The pneumonia was now resistant to everything that Tia wasn't allergic to."

Valerie stopped all treatments, including the AZT, and waited for her baby girl to die. Tia seemed to get a little better, in terms of the pain, but the pneumonia started to suffocate her, and she struggled with every breath. A month after the terminal diagnosis -- 12 months after she started AZT -- as Tia lay on the couch, the entire family could tell by her breathing that she was dying right then and there.

"My oldest son said, 'She's dying, isn't she?'" Valerie recalls. "I said, 'Yes, she is.' I lifted her off the couch and held her. She could barely breath, and couldn't talk at all. I held her and said, 'Mama loves you, Tia. It's OK to let go.' She snuggled into me and took her last breath. She died in my arms.

"Before she started AZT, I wasn't scared she would die. But I was soon after she started AZT. On AZT, Tia went from healthy -- except for the pneumonias, but she had meat on her bones, she was alert and active -- to dead within a year."

Son Nikolas survives brief stint on AZT

"Nikolas has had extremely swollen lymph glands since birth," Valerie says. "His little armpits swelled out like golf balls, and the sides of his neck swelled out so much, his neck was continuous with his head."

Also prior to his HIV diagnosis, Nikolas had language and physical development problems. "He was walking and speaking later and growing much slower than his peers," Valerie explains.

As with Tia, Benson and the other doctors readily offered non-HIV explanations for all of Nikolas' problems. But just as with Tia, once the HIV diagnosis appeared, suddenly blamed everything got blamed on HIV. "Even the language problems," Valerie explains.

Naturally, they blamed HIV for his first case of pneumonia, which occurred during Tia's AZT treatment, before Nikolas had yet taken any HIV drugs. The pneumonia resolved a few days into a routine two-week course of antibiotics.

A second pneumonia episode began just after Tia's death, in late summer, 1997. John Milliken, a pediatric infectious disease specialist, diagnosed it as PCP "because it looked like PCP in the X-ray, though a bronchoscopy was totally negative for it," says Valerie. Since PCP is considered a hallmark AIDS condition, Milliken responded not just with Bactrim -- an anti-PCP drug -- but also with AZT. The pneumonia resolved quickly, but Milliken and Benson kept Nikolas on both medications, the Bactrim as prophylaxis against recurrence of PCP, and the AZT to protect against HIV.

Once the treatments began, Nikolas immediately developed a persistent set of problems indicative of cancer chemotherapy. He had intense diarrhea, and anemia that required blood transfusions. "He constantly complained of a stomach ache and wouldn't eat," Valerie says. General pain throughout his body was so severe that he moaned constantly, even in his sleep, from which he awakened each night screaming. "He was incapacitated," Valerie says. "Just like Tia. All he could do was lie down. And like Tia, he couldn't even move himself from the floor to the couch. We had to do that for him." His knees swelled grotesquely, "to twice their normal size," and his growth, which before had been slow, now stopped altogether.

And a third pneumonia appeared -- this one diagnosed without a bronchoscopy, but assumed by Milliken to be PCP due to his previous diagnosis. This pneumonia, too, soon resolved.

Benson and Milliken both ascribed the pneumonias to HIV having wiped out Nikolas' defenses, his swollen lymph nodes to HIV replication, his developmental problems to HIV "in the brain," and his anemia to "one of the general effects of HIV."

They agreed that AZT was causing two of the new problems, the diarrhea and stomach aches. "These are side effects that will pass in about six weeks," Valerie remembers Milliken telling her. Benson believed that Nikolas' debilitating pain and lost appetite were other AZT effects, but Milliken blamed those on HIV. "He told me that Nikolas' prognosis was extremely poor," Valerie says. "And that I might have just another year with him."

As for the swollen knees, Valerie says she doesn't remember any of the doctors trying to explain that, "but I always knew that was the AZT, since it just suddenly appeared."

AZT, this time in a cocktail

Valerie had seen enough.

During Tia's year of AZT, the physicians recommended that Valerie start a drug cocktail. Though she had no AIDS diseases and a viral load that was undetectable every time it was measured, they told her that the treatment "would extend her life" and that she "should take it for the sake of her children." Within days of beginning this treatment -- which consisted of AZT plus a single protease inhibitor, Epivir -- she experienced the same persistent conditions she had while taking AZT during her last pregnancy: severe headaches, massive hair loss, no appetite, and excruciating pain in her calves. The doctors attributed these conditions now to her hormones "rebalancing" from the pregnancy, and to "depression," a result of being diagnosed, along with two of her children, with fatal AIDS-causing HIV infections.

The terrible conditions continued, along with the AZT and Epivir, for nearly six months, during which time Tia struggled with her own AZT regimen.

Then Dr. Pinsky advised Valerie to add Crixivan, another protease inhibitor, to her regime. Instead, Valerie experimented: she took the Crixivan, but stopped taking the AZT and Epivir. Although the headaches and lost appetite remained, the leg pains subsided and she regained her hair.

It was during the Crixivan therapy that Tia died, and then Nikolas started his AZT course.

While Nikolas and Valerie were both taking these drugs and experiencing intense illness, Valerie began to contemplate Tia's death and the timing of all their illnesses and treatments. She started wondering if the drugs might be causing more harm than good. The physicians and others had been telling her that if she or Nikolas stopped taking their drugs, they would get worse.

But she wanted to see for herself, having never been convinced that these drugs were somehow "working."

So, three or four months into her Crixivan therapy, Valerie went drug-free. "Within a week or two, all my problems were gone," she says. "No more headaches, and my appetite returned." That gave her some time to observe Nikolas and think without her own awful distractions. Two weeks later she remained better, rather than worse. There was no way she would take those drugs again. She was ready to try her idea on Nikolas.

She stopped giving him AZT. All his new problems disappeared, the stomach aches immediately, the incapacitating pain and suppressed appetite in a week, the knee swelling in a month. Benson agreed with this decision, since the conditions she had ascribed to AZT had yet to clear, as Milliken said they would.

In the year Nikolas has been drug-free, even the pre-AZT problems have disappeared. "He's started growing. His shoe size has increased two sizes. For the first time in his life, he's reading and developing at his age level. His lymph node swelling has disappeared as well. For the first time in his life he has arm pits that go in instead of out. And his neck now has definition."

Reappraising AIDS

Valerie wondered how Benson could agree that AZT had caused certain conditions in Nikolas, but in Tia attributed those same conditions to HIV. "She said it was because Tia had been sickly to begin with, whereas Nikolas before the AZT had not been sickly," Valerie says. "But they were the same symptoms, and appeared while taking the same drug."

Valerie did not press this point with Benson, but began her own investigation. "When Nikolas got better after stopping AZT, I knew then that the drugs were the problem," she says. "I knew they were responsible for everything that had gone wrong since we all tested positive, even the things the doctors blamed on HIV."

Her sister's internet search turned up information about Peter Duesberg. "I read his article, 'With Treatments Like These, Who Needs Disease?,' reprinted in his book, Inventing the AIDS Virus," she says. "It described kids who had the same experience with AZT that Tia and Nikolas did. For the first time things made sense to me. Now I understood why Tia had died, and what I had to do to keep Nikolas alive."

Duesberg's writing confirmed her suspicions about the HIV drugs, and convinced her that they -- along with such factors as narcotics, blood treatments, and malnutrition -- were the causes of AIDS, not HIV. Her ordeal had demonstrated another source of "AIDS" described by Duesberg: ordinary diseases, like recurrent pneumonia in children, getting renamed "AIDS" when the patient tests HIV-positive.

Valerie further concluded that HIV doesn't transmit by vaginal intercourse. "Only one of my boyfriends has tested positive," she says of the father. "And he has a history of drug-injecting and bisexuality. But all of my boyfriends since have tested negative, including one I had a two year unprotected relationship with. I don't know how I became positive, but it wasn't from vaginal sex."

Dr. Milliken informs the state

Within this setting, in late summer 1997 Benson suggested to Valerie that Nikolas might benefit from the new cocktail therapy. Benson consulted with Milliken, who told Valerie that cocktail therapy would not cause the problems the AZT therapy had. The new treatment was better, he said, and Nikolas needed it because his viral load had increased. But the cocktail Milliken initially proposed contained AZT (along with another AZT-style cancer drug and a protease inhibitor).

At first Valerie posed her objection simply in terms of the cocktail's containing AZT. Milliken responded by replacing the AZT with another drug from the same class. By this time, though, the doctors had no hope of convincing Valerie to administer any anti-HIV drugs to Nikolas. Switching AZT for another cancer chemotherapy drug that does the same thing made no difference to her. She told him so bluntly -- no anti-HIV drugs at all.

Milliken wrote a letter in November 1997 to Benson, which he copied to the Department of Human Services, suggesting, according to Judge Clapp's decision, "that Ms. Emerson is incapable of adequately managing medical care for her son and that her parental right to manage his medical care should be removed."

Benson, again in Clapp's words, "felt that Dr. Milliken had been unfair, precipitous, and recklessly uninformed." Although she agreed that Nikolas should begin cocktail therapy, Benson felt this therapy should not be administered against the mother's will, and that Valerie should retain custody. But Milliken's letter set in motion a DHS investigation to determine if the agency should heed his recommendation to take Nikolas from Valerie.

A DHS investigator arranged for Valerie to obtain a third opinion, from Kenneth McIntosh, a pediatrics professor at Harvard Medical School, and chief of Division of Infectious Diseases at Children's Hospital in Boston.

When the time came to travel to Boston for the appointment with McIntosh, Nikolas had the flu. "I tried to change the appointment," Valerie explains. "It was a cold winter and I didn't want Nikolas traveling with the flu. I told the DHS people, but they said I couldn't reschedule." So she made the appointment.

McIntosh in his report endorsed Benson's view, that Nikolas would benefit from cocktail therapy, but that it should be initiated only with Valerie's concurrence, and that she should retain custody. "Dr. McIntosh saw no irrationality on the part of Ms. Emerson" in declining to treat Nikolas with cocktail therapy, Judge Clapp wrote.

McIntosh also disputed Milliken's PCP diagnoses. McIntosh reviewed the records and concluded that Nikolas's pneumonias were all bacterial, "definitely not PCP," Valerie says.

And McIntosh disagreed with Milliken's blaming of HIV for Nikolas' developmental problems. According to Valerie, he said they were unrelated to the HIV.

When Valerie and Nikolas returned from their visit with McIntosh, Nikolas had a fourth case of pneumonia. Benson diagnosed it as bacterial, and it resolved a few days into the usual two-week antibiotic treatment. She attributed this pneumonia to the HIV infection which, in her view, was unchecked since Valerie wasn't treating Nikolas for it. But when Valerie visited McIntosh a second time, he concluded differently. He felt that the pneumonia had developed because Nikolas was already suffering from influenza when he made the original trip. "He told me even an HIV-negative kid could have developed pneumonia in the same circumstances."

Valerie received another dissenting opinion at about this time. Benson asked the senior physician at her practice, Toby Atkins, what he thought. Atkins said he considered the HIV drugs to be so toxic that he wouldn't prescribe them to his own children if they tested HIV-positive.

The guardian ad litem appeals

When DHS Commissioner Kevin Concannon announced just after the September 14 ruling that his office would not appeal, Valerie and her supporters thought Judge Clapp's ruling was final, and Nikolas' safety assured. In a press release, Concannon termed the hearing "full and fair" and Clapp's decision "thoughtful." He added, "We wish the child and the mother well."

Then came shocking news ten days later, on September 24, that the guardian ad litem had appealed Judge Clapp's ruling.

Guardians ad litem are volunteer third parties who register with the court as advocates for children involved in custody trials. They investigate the case and, prior to trial, present to the judge a formal recommendation. For this case, the court assigned Mary Brennan, who happens to be an attorney.

Clapp in his decision mentioned neither Brennan nor her report, which recommended in favor of the state's petition. Her report to Clapp is unavailable to the public.

In a brief phone interview with RA, Brennan would not discuss the case, but described her background.

"I graduated from law school in 1971," she said. "I have a masters in public health from Harvard, and have worked as general council for a major pharmaceutical company, and some hospitals, including one of the nation's largest health care providers. I even helped run a hospital."

Brennan is now an independent private attorney in nearby Orono who actively represents clients, but was unspecific about what sort of law she practices.

During the course of the interview, when she learned that RA is affiliated with Rasnick and Giraldo, she said: "I don't want to be helpful to you at all. I think their ideas are dangerous. I'm heartsick that HIV-positive people will now think, after reading about the ruling in the papers, that they will get better if they do nothing. I'm distraught that people might think now that the views of Rasnick and Giraldo are mainstream, when they're not."

According to Valerie, Brennan in her investigation "spent no more than five minutes with Nikolas, and never got closer to him than three feet. She told me she had lost a brother to AIDS, and that she was the primary care giver for him and his boyfriend. She said this had traumatized her." In a follow-up call to confirm this information, Brennan informed RA that she was no longer communicating with the press.

Media attention

Once state authorities petitioned for custody of Nikolas, the case attracted intense national media attention. "Good Morning America" covered the story in a special report September 9. Jane Pauley flew in from a vacation to interview Valerie for an upcoming segment of "Dateline NBC" that has not yet been scheduled. The Boston Globe featured a large report and several follow-ups, the wire services issued regular dispatches from Bangor, and the local media covered the story daily. People magazine ran an article in its October 5 issue, and each of the network newscasts have covered the story.

"In the interviews, I don't say that no one should take those drugs," Valerie says. "I'm still worried about what the state might do to me if I say what I really feel -- that nobody should take those drugs, that HIV doesn't cause AIDS, and that some narcotics and anti-HIV drugs do." -- Paul Philpott

Valerie Emerson has read this article in its final form prior to publication and verifies that it accurately reflects her experiences and views. She is the newest member of the Group.