Under the nation's
glare, Valerie Emerson, 27, played tug-of-war with the Maine
Department of Health Services (DHS) over control of her child's
anti-HIV treatment until September, when she won the right to
withhold meds from her 4-year-old son, Nikolas.
Once Emerson's doc got wind of her decision to stop treating the
asymptomatic Nikolas -- after 10 weeks on AZT, he "lay on the floor
and moaned and cried," she said -- the doc told the DHS, which filed
a child-protection order, alleging that waiving drug treatment is
child abuse and neglect. "The child ought to be afforded medical
treatment extending his life," said DHS Commissioner Kevin
Concannon. But Emerson, HIV positive and med-free herself, argued
that Nikolas' "now" takes priority over his future. "Quantity is
something I have no control over, quality I can control," she said.
"If I can delay the side effects for a couple more months so he can
be a little boy, that's what I'm going to do ... . Within two months
after I stopped the AZT, he was on the road back." Emerson watched
Nikolas' big sister, Tia, suffer crippling AZT side effects before
becoming resistant and then dying of AIDS in 1997 at age 3. Her
decision to discontinue Nikolas' treatment, she said, resulted from
research -- not depression, as the DHS contended.
Besides noting that AZT monotherapy is substandard treatment,
Maine district court judge Douglas Clapp wrote: "The state of Maine
is in no position to tell her, in the case of her unique experience,
that she is wrong in her judgment to wait for better and more
reliable treatment methods." And that's exactly what Emerson intends
to do. She said she wants Nikolas to be "as receptive as possible"
to the better drugs she believes are down the road. Although her son
could likely benefit from combo therapy, Emerson said: "It's not a
cure, it's a hopeful. If it was a cure, then yes, I'd be negligent
as hell for not giving it to him."