A EUGENE, OREGON judge on April 20 made
permanent a December 11, 1998 emergency order by assigning custody
of infant Felix Tyson to a state agency. The arrangement places
Felix with his parents as long as his mother, who tests "HIV-positive,"
promises not to breastfeed.
Felix's parents, Kathleen and David, made international news when
they decided to breastfeed him and not to administer him the drug
AZT. The couple rejects the popular beliefs that positive HIV tests
indicate active HIV infections, that HIV infections cause AIDS,
that breastmilk transmits HIV, and that "anti-HIV" pharmaceuticals
like AZT confer any health benefits. As RA reported
in March, when Kathleen first tested "HIV-positive," the
Tysons held the conventional view that HIV explains AIDS. After
learning about the AIDS reappraisal movement and carefully studying
it, they adopted the view that other factors, not HIV, explain AIDS.
The official view holds that positive HIV tests indicate AIDS-causing
HIV infections, that breastfeeding transmits HIV, and that AZT reduces
in utero HIV transmission and helps prevent HIV infections
from taking hold in exposed individuals. For these reasons, most
physicians treating HIV-positive, pregnant women prescribe AZT to
them and their newborns and recommend against breastfeeding.
Many scientists, however, hold a different view, one shared by the
Tysons: that most HIV-positive people lack active HIV infections,
that in any case HIV infections cause neither AIDS nor any other
disease, that breastfeeding transmits HIV either rarely or not at
all, and that AZT -- rather than conferring benefits -- is actually
one of the factors that causes AIDS.
The day after Felix's birth, hospital physician Lauren Herbert witnessed
Kathleen breastfeeding and learned that the Tysons refused to administer
AZT to Felix. After failing to convince the Tysons to accept the
standard recommendation -- no breastmilk and daily doses of AZT
-- Herbert reported the couple to Oregon's Services to Children
and Families (SCF). The SCF obtained a temporary custody ruling
from Judge Pierre Van Rysselberghe, who assigned custody to the
agency. Van Rysselberghe's order placed Felix with his parents so
long as they agreed to withhold breastmilk, feed him AZT, and submit
to regular compliance inspections by SCF representatives, which
they did.
For the April 20 trial, the Tysons retained Maine attorney Hilary
Billings. Previously, Billings won a case against the state of Maine
in its attempt to take custody of an HIV-positive child whose HIV-positive
mother, Valerie Emerson, refused doctor's orders to administer him
AZT after learning of the RA perspective.
In the Tyson case, Billings originally intended to argue for "informed
consent," as he did in the Emerson trial. He would have international
human rights expert George Kent, PhD, a political science professor
from the University of Hawaii and RA member, testify that parents
have the right to choose medical treatment from among conflicting
reasonable recommendations. Rather than prove the superiority of
the Tysons' views over those of the medical consensus, he would
call experts to testify that the Tysons' conclusions are reasonable
-- based on scientific data and shared by many scientists and physicians
-- and thus protected by international informed consent standards.
"We never intended to put HIV on trial," recalls David
Rasnick, a pharmaceutical researcher and RA chairman who testified
for the Tysons.
When Juvenile Court Judge Maurice Merten refused to hear the informed
consent argument (ruling that the concept did not apply) and forbade
Kent's testimony, Rasnick notes, "we had no choice but to put
HIV on trial. Judge Merten wouldn't let Billings discuss informed
consent. But he would let us say anything we wanted about HIV and
AZT."
This made Billings's job much harder: to disprove one of the most
popular medical views of all time -- a view familiar to and accepted
by most judges -- rather than to demonstrate reasonableness for
an alternative view.
"It was clear to me that the judge had his mind made up before
the trial began," Rasnick said. "I just didn't know which
way. He kept rushing things along. When-ever he figured out the
direction of the testimony, he'd say, 'OK. So that's your point.
Move on to the next point.'"
Although Merten's ruling included a stricture against breastfeeding,
it did not require AZT administration or continued surveillance.
This partial victory is not as generous as it might appear, though;
by the time of the trial, four-month-old Felix had persistently
tested "viral load" negative, meeting the new standard
for discontinuing infant AZT administration. (Before viral load,
the discontinuation standard involved antibody testing at 18 months.)
Because the Tysons have agreed not to breastfeed, Felix will continue
to live at home. They have decided not to appeal. "The process
would likely take as long as a year, which is longer than we would
want to breastfeed," David Tyson told RA . "Plus,
an appeal could involve an order stipulating resumed surveillance.
We are concentrating on regaining custody of Felix by agreeing to
abide by the ruling."
The Tysons hope to cover legal expenses with continued donations
to the Free Felix fund.
Months before trial, Services to Children and Families representatives
offered to drop the case, to return custody to the Tysons, and to
stop surveilling them if they simply agreed to comply with Dr. Herbert's
recommendations. The Tysons refused. They felt that although the
deal would guarantee them custody of Felix, they wanted a ruling
that would give them, and all parents, the right to make informed
medical decisions for their children.
Roberto Giraldo, MD, HIV test expert and RA Board member, served
as the Tysons' only other technical witness. He and Rasnick praise
Billings's performance, and support his strategy of putting HIV
on trial. "Informed consent worked in the Emerson case because
that case was different," Rasnick says. "The Emerson child
already has what the state considers to be an HIV infection, so
there was no concern about acquiring this supposedly harmful virus
from breastfeeding. And the Emerson child had been sick with AIDS
while on AZT and got better when his mother stopped giving him the
drugs. But the Tysons have refused the official treatments all along.
"In a sense, I understand the judge's ruling. Some experts
testified that HIV is harmful and others that AZT is harmful. So
he issued a ruling that he feels exposes the child to neither. We
think, of course, that mother's milk is the best possible food for
an infant, even if the mother tests 'HIV-positive.' But most Americans
think that infant formula is good enough; millions of healthy children
have been raised on it. But most Americans, including judges, have
been indoctrinated to fear milk from so-called 'HIV-positive' mothers.
"I think we can always win a ruling against forced administration
of drugs; judges are open to the idea that they are harmful. But
convincing a judge that HIV is not harmful, and that milk from mothers
labeled 'HIV-positive' is safe, that's a much harder task and a
totally different scenario. For that, we really must put HIV on
trial."
In future cases, Rasnick says putting HIV on trial can work, provided
there is enough preparation time and more expert witnesses to testify
on other aspects of the scientific controversy.
An April 20 Associated Press article acknowledged
that the "case focused on clinical theories about how HIV doesn't
really cause AIDS." The May 16 Boston Globe included
a sympathetic portrait of Billings, entitled, "A lawyer's medical
challenge: Contends HIV does not necessarily cause AIDS."
-- Paul Philpott