Local reactions to the CDC's revised guidelines can basically be summed up as a mixed bag. Although the HIV-agency community is in favor of testing, the critical issue of consent is causing many to withhold a total endorsement of the proposed guidelines.
Matt Sharp of Test Positive Aware Network expressed to Windy City Times that he has 'mixed feelings' about the development. On one hand, Sharp commented that 'there [ have ] always been concerns with a government HIV name-based reporting system. It may just prevent people from coming to get tests for fear of disclosure and all the implications thereof. Our worst fear is that this names based system would ultimatley deter people from getting tested in the first place.'
However, he added that 'this name-based system is being implemented so that states can provide data to the federal govenrnment, specifically CDC and HRSA [ Health Resources and Services Administration ] , in order to ensure government funding for services and care, getting people to take advantage of the current treatments.'
Like many, Sharp wondered about counseling getting lost in the shuffle: 'Our other major concern is that counseling component that has been a stalwart of HIV testing programs in the past. Learning your HIV status is not as simple as learning your cholesterol levels, or even if you have hepatitis.'
Jim Pickett, the policy director of AIDS Foundation of Chicago ( AFC ) , echoed Sharp's sentiments. 'We all are for people knowing their status,' Pickett said. 'However, we all very much opposed to people doing it without consent; that's a very, very bad idea.'
Pickett added that finances—specifically, the coffers of those who are diagnosed—also play a factor: 'Why do we think testing is going to stop this epidemic? Right now, we have over half a million who live with HIV/AIDS who don't have regular access to healthcare. What makes us think that bringing lots of new people to the fold—which is not being talked about in this situation—is a good thing?'
When asked by Windy City Times about a statement from American Medical Association board member Dr. Nancy Nielsen that 'the recommendations are important for early diagnosis and to reduce the stigma still associated with HIV testing,' Pickett became even more passionate. 'I don't see how this will reduce the stigma,' he opined. 'Not providing people with information? Removing their ability to make a decision about whether they want to take a test? How will these things remove stigma? I'm not clear on that.
'I believe that we should offer routine testing [ but ] they should be provided with a chance to consent and to learn what that test means. That would reduce stigma.'
In addition, Pickett pointed out a legal component involving the proposed guidelines: 'Frankly, in Illinois it's against the law; you must have pre-test counseling. That law was put into effect for a reason: it's good public health.'
David Munar, the associate director of AFC, also talked about statutes. 'The very same laws that describe how testing's supposed to be in Illinois have critical safeguards regarding privacy and confidentiality,' he said. 'I'm hoping that Illinois and other states move cautiously and look at all the implications and continue some activities that are not completely in line with the CDC but that are working. I think the fundamental question we need to ask ourselves is, 'What's working in Illinois?''
Regarding the linchpin issues of advice and consent, Munar said that he was 'disappointed that the CDC recommends that testing occurs without pre-test counseling and without informed consent. Both of those are activities that spur important conversation about HIV prevention [ and ] treatment.
'There are tremendous social implications with having HIV; there's stigma and there's discrimination [ out there ] . There are a lot of serious considerations. It doesn't make sense to encourage doctors and health care workers to have fewer conversations about HIV.'
— Andrew Davis