8 T m ay 20. 1 0 0 4 ▼ just ou«
FOR ALL SKIN TYPES.
national news
Empowerment er
danger?
Concerns about counseling and privacy divide community
over HIV home test kit
by Bob Roehr
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‘T he potential for catastrophic impact on indi­
ne day, perhaps soon, you may be
viduals using such a home test product far out­
able to walk into a drug store and lay
weighs the intended advantages,” said NALGHC
down $30 to purchase a home test­
ing kit for HIV. Then, in the privacy
coordinator Christopher Portelli. The group is
of your home, you could prick your
concerned about the increased risk of suicides and
inadequate
finger, place a drop of blood on a specially
treated counseling and referral as part of the
paper, and mail it to the lab. A few days later, you
proposed home test kit.
could call an 800 number to receive the results.
Perhaps the most vivid personal example was
Direct Access Diagnostics, a subsidiary of the
supplied by Hand Carde, a retired career naval
consumer health care products manufacturer
officer living with AIDS. He said his three tours
Johnson & Johnson, has applied to the Food and
in Vietnam did not begin to compare with the
Drug Administration for a license to sell such kits.
tension he felt after learning he was HIV positive.
Johnson & Johnson president, Elliot Hillenson,
“I was suicidal for three days,” Carde said. He
said in testimony before the FDA that his com­
credits his survival in part to the counseling he
pany is “empowering people who choose to get
received, and he doubts if it would have been
testing and counseling in a setting that they are
nearly as effective over the phone.
comfortable with.”
Joining in opposition to home test kits were
Sean Strub is an AIDS activist and publisher
the National Gay and Lesbian Health Foundation
of POZ, a slick new consumer-oriented AIDS
and the National Association of People with AIDS.
magazine. He is also an
Most experts believe
expert in marketing to the
that anonymity and confi­
queer community. Direct
dentiality are essential to
Access is one of his cli­
the integrity of HIV test­
ents, and the current issue
ing. Current programs have
of POZ contains a market­
achieved this by develop­
ing survey on home test
ing procedures which iden­
kits, paid for by Direct
tify clients only by code
Access.
numbers, not by name, and
Strub is a “strong advo­
often by requiring the cli­
cate” of expanded HIV
ent to return in person to
testing. He sees this test as
get test results. Direct Ac­
“an information tool.” He
cess would adapt those
opposed an earlier home
principles.
test kit proposed by
However, with tele­
Burroughs-Wellcome “be­
phone technology such as
cause that was really a pro­
“caller ID,” now available
gram for getting people on
to subscribers, and the fact
AZT.”
that computers can track
Strub got involved with
and record all 800 num­
Direct Access because, “I
bers, the potential exists
wanted to make sure that
for either commercial or
whatever expanded testing
government interests to
options were developed
easily match those cap-
were separated from a pre­
e
tured numbers with tele­
determined course of treatment for someone who
phone subscriber lists, destroying the principle of
is positive.”
anonymity.
Tom Mosley supported the Direct Access li­
This concerns care providers and civil liber­
cense application in testimony before the FDA.
tarians because of the potential for intrusion and
Until recently, he managed the hot line and testing
also for mis-identification by third parties, as the
outreach for AIDS Project Los Angeles.
person making the call may not be the one in
“My agenda is to have as many minority
whose name the telephone service is registered.
people as possible be diagnosed as early as pos­
It also increases the possibility of abuse or
sible, and home testing will do that,” Mosley said.
misuse by a third party. An employer, business
“Many minorities are distrustful of the medical
partner or lover could take a blood sample, either
system and will not be tested at all without the
surreptitiously or under false pretenses, turn it in,
home kit.”
and get results— without even telling the person
Most experts agree that early knowledge of
who has been tested. The current system relies
HIV status can be very important to limiting
upon the professional integrity of the medical
transmission of the virus to others. It can also lead
community to take the blood sample and report
to medical and lifestyle changes that can improve
test results only to the individual being tested.
the length and quality of life for those already
Money is a large, unspoken factor underlying
infected. They also agree that effective counsel­
this debate over home test kits. The position of
ing is an important component of the testing
Direct Access Diagnostics is clear, they hope to
process.
make money by selling millions of kits each year.
Where the experts begin to differ is over what
But many AIDS service organizations also
constitutes effective counseling. Supporters of
have a monetary stake in home testing. Testing
home testing maintain that telephone counseling
and counseling are often a significant part of the
is adequate, opponents disagree.
services they now offer. And that means
The National Alliance of Lesbian and Gay
money— money raised from the private sector
Health Clinics has announced its opposition to
or in the form of government contracts. It is not
the Direct Access test kit. The Alliance repre­
surprising such groups would not favor having
sents 11 clinics across the country, from Boston
their clientele, and future dollars, diverted to a
to San Francisco.
mail order provider.
O