HIV and AZT
By Nicholas Regush 


I confess. I tried but couldn’t shut down my computer when I took some time off
from writing this column. The extra leisure allowance that flooded into my life
allowed me to do a little snooping into Internet health sites, like drkoop.com,
for example.
I had been planning to write about a growing debate over whether newborns of
HIV-positive women should be required to take the drug AZT.
What did drkoop.com have to say about this smoking controversy in its section
on HIV-positive pregnant women and the chances of passing the illness on to
their babies? Nothing, actually. There was also nothing about the growing
number of HIV-positive women who’ve decided they don’t want their kids to take
AZT.


And therefore there was no mention that various medical authorities throughout
this country are trying to force some of these women to give their babies the
drug. Some who don’t comply have their children snatched from them or face
threats that they will. The drkoop.com site makes it seem as though
HIV-positive women can all freely discuss with their doctors “options” for
protecting their children against AIDS.
Well, some people don’t see it that way.


Parents’ Rights vs. Medical Dogma


Last week I met with Deane Collie, the director of the Virginia-based
International Coalition for Medical Justice, a group that fights for the right
to make medical decisions without government interference. They’re helping
women go to court to prevent doctors from giving AZT to their children. The
coalition has already heard from about 60 women who don’t believe HIV is the
cause of AIDS, and/or that AZT is going to help their youngsters. In fact, some
of the women believe AZT will harm their children. Nine legal cases are under
way, and Collie believes this is just the tip of the iceberg. She expects an
explosion of requests in the near future as state governments act to force
families to comply with AIDS treatment dogma. In Bangor, Maine, Valerie
Emerson, an HIV-positive single mother, gave birth to a daughter and son who
also turned up positive. Her daughter Tia was given AZT and died around age 4.
Emerson believes the drug hastened Tia’s death. For this reason, she stopped
the medication for her son, Nikolas. Tipped off by Nikolas’ doctor, the Maine
Department of Human Services accused Emerson of neglect and sought custody of
her son. Emerson went to court and won her case, and so far, Nikolas is doing
fine without the medication.


Mothers on the Run
In Eugene, Ore., however, Kathleen and David Tyson didn’t fare so well in the
judicial system. Kathleen (who is HIV-positive) refused to give AZT to her son,
Felix (who is HIV-negative), but was forced to do so for 12 weeks by the state.
In this case, armed guards came to the maternity ward threatening to seize
Felix if the Tysons didn’t agree to allow AZT treatment. Kathleen had also
wanted to breast-feed Felix, but the court ruled against her. (Many scientists
believe HIV can be transmitted via breast milk.)
Coalition for Medical Justice Director Collie says that the group is in touch
with HIV-positive women who are on the run from the “law,” staying one step
ahead of authorities wanting to seize their children. So is the coalition a
kooky organization? Are the Emersons, Tysons and other families refusing AZT
treatment irresponsible? Or are the health authorities the ones wearing the
dunce caps?


Passions can run high in scientific circles when questions are raised about
conventional thinking in AIDS research. The use of the anti-HIV drug AZT in
children of HIV-positive mothers is just such an issue.
Consider the telephone call I made this week to Dr. Mark Wainberg, head of the
International AIDS Society: I had called Wainberg, who does AIDS research at
Montreal’s Jewish General Hospital, to interview him on the science underlying
the view that HIV-positive women should be given AZT and that their newborns
should also be put on the drug.



Holocaust Equation
I called Wainberg because he had been quoted in the Ottawa Citizen, a major
Canadian daily, saying that the dissidents were “fringe people,” and that
“There are people out there who deny that the Holocaust happened. Do we want to
give them equal credibility?” This article quoting Wainberg had been circulated
on the Web. That’s how I learned about it. Did Wainberg really make the
Holocaust comment? If so, did he really believe a comparison between mothers
fighting for their rights in the courts and those denying the Holocaust was
valid? If he indeed felt so strongly, then maybe he could document the AZT
science underlying his views.


Not only did Wainberg verify what he had said in regard to the Holocaust in the
Ottawa Citizen, but he began shouting at me, saying that if I wrote anything at
all on this issue, I would be a “child murderer.” He threatened that if I wrote
anything, he would do everything possible to get me fired from my column and my
“bosses” fired. He taunted me, saying that I wouldn’t have the guts to print
these comments. I asked him if he therefore believed that this AZT issue should
never be reported by the media. “Never,” he continued to shout. “Absolutely
never.” He then went on to condemn me again and again as a “murderer.” He also
told me that he considered any other journalist raising questions about the use
of AZT in children of HIV-positive mothers to be a child killer.


Just Don’t Ask
Wainberg, a well-recognized AIDS researcher who is one of the developers of the
anti-HIV drug 3TC, never once asked me what science questions I wanted to
explore with him, and I could barely get a word in edgewise. He had remembered
me from more than a decade ago as a Canadian medical reporter who had included
nonconventional features and commentaries on AIDS among my more mainstream AIDS
stories. Though Wainberg had taken issue with some of my reporting in those
days, I had been totally unprepared for this week’s savage assault on anyone
(including myself) who had questions about AZT treatment in pregnant
HIV-positive women and their newborns.
Considering that there is usually room for argument on scientific studies, that
there are reasonable fears about the potentially powerful side effects of AIDS
drugs, and that there may be legitimate concerns about human rights involved in
such a complex situation, I could only shake my head in amazement when I put
the phone down. Given that other scientists have also shown strong emotion in
denouncing challenges to AIDS orthodoxy, it can make you wonder what in the
world is happening to scientific debate.


Final Answers?
One key study was published on Nov. 3, 1994, in the New England Journal of
Medicine. It showed that HIV-infected mothers who received AZT gave birth to 13
HIV-positive infants, while mothers on placebos gave birth to 40 HIV-positive
infants. This small study was stopped early because of the significant
difference between the two groups and the results were immediately touted as
grounds for making AZT standard therapy for HIV-positive mothers and their
newborns. But no study comes with all the facts. The authors of the NEJM
article note, for example, that the risks and the benefits of initiating (AZT)
treatment during the first trimester of pregnancy, after 34 weeks’ gestation,
or in labor, or of treating only the newborn were not assessed. In an editorial
accompanying the study, the authors state: “The results, however, raise many
questions about the mechanism of action of (AZT), the timing of transmission,
the effectiveness of the regimen in women with clinical characteristics that
differ from those women in the trial, the long-term effects of exposure to
(AZT) during pregnancy, and the type of counseling that is appropriate to
ensure that HIV-infected women understand the benefits, risks and uncertainties
of the therapy.”


No Absolutes Except One
The authors also note that in its recommendations for AZT therapy, the public
health service emphasizes “the need for a thorough discussion of the benefits
and risks… The final decision on therapy should be made by the woman in
consultation with her health care provider.” I might add, a health provider who
is properly informed.
No study has since been published that should change the spirit of that
recommendation. While some proponents speak of the steady decline of infant and
child AIDS cases after a 1992 peak, factors such as declining births to
HIV-positive women and better prenatal care may have played a role.


Then there are the voluminous reports of adverse reactions to AZT to consider,
including the drug’s ability to damage bone marrow, kill growing cells
(particularly immune cells) by interrupting their synthesis of DNA (life’s
blueprint), and to establish itself in DNA with the potential for long-term
consequences, which includes the possibility of cancers.
Should there be widespread reporting and discussion about this entire issue?
Absolutely!