Date: June 24, 2003  
Title: Yin, Yang, and Tuskegee-Lite: Ethical Concerns
Over HIV Testing in ADAP-Challenged States

Gordon Nary

Share this Editorial with a Colleague

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 t
o 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.  


ADAP Home Page    

Yin, Yang, and Tuskegee-Lite