US public health
officials have great hopes that our national HIV testing outreach
program boosted by the OraSure
Rapid HIV-1 Test, a National HIV Testing
Day, and hip-hop
media savvy will make major inroads into hard-to-reach communities. But few
officials have grappled with the yin and yang of HIV testing when the
medically indigent who test positive may be unable to access life-saving
drugs through the AIDS Drug Assistance Program (ADAP)
in states where ADAP is closed to new enrollees or threatened with closure.
The same can be said
about states where eligibility restrictions – especially very low financial
eligibility criteria – are so restrictive that large numbers of very
low-income HIV+ individuals cannot qualify for ADAP.
A successful national HIV testing
outreach program could help identify tens of thousands of HIV-positive men
and women who would benefit from timely and appropriate HIV care and who may
subsequently take appropriate measures to reduce the transmission of HIV to
others. However, a successful HIV testing outreach program could also
add thousands of new ADAP enrollees to the rosters of a system that cannot
meet current needs in a growing number of states.
Some may recall the
pre-HAART resistance to HIV testing when many at risk for HIV did not want
to be tested or know their status since the therapies available at that time
offered minimal hope. A parallel challenge exists today when available
life-saving drugs are denied to those in ADAP-challenged states whose
HIV-positive residents may face unnecessary suffering and untimely death
without these drugs or with delayed access to them. Some may chose not to be
tested if they know that they would not be able to secure timely and
appropriate care if they test positive. They may not want to suffer this
devaluation of their lives by the wealthiest and most blessed nation in the
world. Unfortunately, many in the hard-to-reach
communities are not informed about the challenges to the viability of ADAP
programs in their applicable states prior to testing and therefore cannot
give full
informed consent to be tested. One might therefore question the morality of the
national HIV testing outreach hype
without the appropriate caveat when potentially thousands of
men and women who test positive may then be told (to quote
Florida AIDS Action’s Gene Copello) “Sorry... we can't
help you get the drugs you need that could save your life, we don't have
enough money.'"
The yin of HIV testing and
the yang failure of Congress to adequately fund ADAP raise serious ethical
challenges to the medical and public health communities. Some might argue
that in states where ADAP is closed or threatened with closure, there is a duty to warn
testing applicants that if they do not have adequate funds or insurance to
pay for HIV drugs, all they will get with a positive diagnosis is a Brechtian
"Sorry." Although significant public benefit will
result from the national HIV testing outreach program, great public and personal harm may also be unintended consequences of this important initiative.
Our “hard-to-reach” populations are hard to reach, not only by
reason of location, language, or culture, but also by distrust merited by past
breaches of faith between the medical and public health communities and the
populations that they serve - one of the most egregious being the Tuskegee
syphilis study. Not to warn HIV-testing applicants in applicable states of
ADAP closures, risks of closure, and waiting lists would be another breech
of trust - and one that could merit the epithet of “Tuskegee–Lite.”
Our obligation is to earn and reinforce trust in our healthcare system by
hard-to-reach communities and not to further exacerbate the historical
wounds of distrust.
Some
might also argue that there is an implicit contract in HIV testing - if one
agrees to be tested, then he or she will receive timely and
appropriate treatment if the test is positive. If this argument is
valid, then the responsibility for providing HIV testing may also carry with
it the responsibility to serve as an advocate for those who could suffer
harm from ADAP closures
or other
restrictions
as
unintended consequences of HIV testing.
There is another solution to this yin/yang dilemma. If Congress would yang
up the $283 million needed by ADAP for FY 2004, - which should be
adequate to cover treatments for those likely to need help through March 30, 2005
- our medical and public health communities would not have to wrestle with
this ethical challenge.
In
an ideal yinless/yangless society, the medical and public health communities
would partner with ADAP advocates in a synergistic effort to secure adequate
Congressional funding so all who test HIV-positive and have to rely on ADAP
for their life-saving drugs would never have to hear "Sorry."
We are all responsible for the consequences of our actions as well as
for the consequences of our failure to act when we have the responsibility
to do so. If our actions or failure to act contribute to the unnecessary
suffering and untimely death of others, then we share in the culpability for
these consequences. We have the responsibility to provide this information to
those at risk for being denied access to ADAP
so that full informed consent for HIV testing can be effected.
Violating the trust of those who present themselves for testing and assume
that timely and appropriate treatment will be available if they test
positive is harmful to the person tested, the person responsible for the
testing, and the integrity of the medical and public health communities.
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