HIV Prevention Big Brother Style? | Community HIV/AIDS Mobilization Project

HIV Prevention Big Brother Style?

Current controversies in government testing
regulations and guidelines, HIV reporting,

and monitoring of community programs

Tuesday, June 27th
6:30 - 8:00PM

LGBT Community Center
New York City
Issues of confidentiality, monitoring, tracking and testing are among the most hotly contested of HIV/AIDS issues today. 25 years after the first cases of AIDS, are the original safeguards an impediment to care? Or do racial disparities, homophobia, and stigma remain the barriers to testing and care?

Where is the balance between program monitoring and the invasion of privacy when people with HIV have been prosecuted for sexual activity? And can a shared commitment to human rights bring us together rather than dividing us over these thorny issues?

Speakers included:

Catherine Hanssens, The Center for HIV Law and Policy
PowerPoint Presentation
Glenn Zermeño, LGBT Community Center
(Derrick Chandler, Housing Works was not able to attend due to an emergency)

Moderated by: Julie Davids, Community HIV/AIDS Mobilization Project (CHAMP)

Co-sponsored by:
The Center for HIV Law and Policy – http://hivlawandpolicy.org
Community HIV/AIDS Mobilization Project (CHAMP) – http://www.champnetwork.org
Gay Men’s Health Crisis (GMHC) – http://www.gmhc.org
Housing Works – http://www.housingworks.org
LGBT Community Center – http://www.gaycenter.org

Julie Davids, CHAMP:

Below is a summary of Julie’s remarks:

CHAMP is seeking to build the capacity of HIV prevention organizations to remain or join policy debates.

The issue is not only about individual relationships with data collection, but also about keeping organizations running that connect individuals and their needs with valuable services and support. Some issues to consider include: changes in leadership, loss of funding, change in focus, and burdens of a new generation of prevention.

How do we look at prevention today? How do we track the tracking? Monitor the monitoring? Survey the surveillance? What are the boundaries? We need to have a healthy skepticism and sense of humility.

With new technology and government intervention, prevention organizations are being spread thin. How do we band together and fight for what we want and what is it that we want?
Update on the CDC’s Program Evaluation and Monitoring System (PEMS) –

There are many problems with PEMS:
- It includes personal, invasive research.
- It gets in the way of prevention work.
- It won't do what it's supposed to (not that the government has defined exactly what it's supposed to do yet).
- It is a fiscal strain on organizations and a resource strain in general.
- It brings up privacy concerns.

The current status of PEMS, as a result of CHAMP’s campaign, is that PEMS has been indefinitely suspended. But unfortunately, many community organizations are still using the systems because they had already switched over. Essentially, they're using admittedly flawed data collection systems. We need to find a fix!

Catherine Hanssens, Center for HIV Law and Policy:

It is always important to question the core values and assumptions of any proposal, current, past, or future. Data collection is supposedly important because it aids in the allocation of funds and the distribution of resources and information. New Jersey has names-based reporting, but funds are still distributed according to politics, so where does that leave us?

What we need must be: Evidence based! Evidence based! Evidence based!

New CDC recommendations on testing are on the able. They say that there is no longer a need to provide counseling or obtain written, informed consent for HIV testing. Anyone can be tested as long as they're told that they will be.

But informed consent matters! It is necessary to explain the test and procedures and the options for anonymous testing and opt-out measures as well as the possible repercussions of being tested. There are different concepts of patient involvement and autonomy in medical decision-making. One size doesn't fit all – different patients have different needs.

Important information will be lost without informed consent procedures, and this could be seriously detrimental to the patients.

What about the capacity to consent? Does someone entering an ER with a gunshot wound really have the mental capacity to understand the ramifications of and consent to and HIV test?

The evidence shows that:
- pretest counseling is not a barrier to testing.
- more often than not, barriers lie in the physician’s perceived lack of training and knowledge in HIV testing and discomfort in offering and following up on test results.

There is no evidence whatsoever that counseling is a barrier to testing, but without it, there is a real threat of increasing the problem of racial disparity in newly diagnosed HIV cases. Issues include:
- Lack of access to healthcare
- Lack of culturally sensitive information dissemination
- Poverty, socioeconomics
- Lack of knowledge and access to educational training/information

HIV treatment and prevention requires engagement in the health care system.
We need to take advantage of the opportunities we do have to educate patients and get them involved in prevention and care.

Glen Zermeño, LGBT Community Center:

Below is a summary of Glen’s remarks:

PEMS is ineffective and problematic. PEMS measures sex acts, but many youth are unclear as to what counts as a sex act. This leads to inaccuracies in data collection and analysis.

Success is measured by decreases in number of sex acts, but real success is information, knowledge, and tools to make smart decisions about choosing to engage in sex acts. It's about having the personal agency to begin dialogues about safe sex and prevention as well as having the confidence to do things like insist on condom use. There is a great lack of information and education among youth.

At the Youth Enrichment Services Program (YES) at the LGBT Community Center, it's hard enough to get youth in the door, so why is the government adding more barriers to prevention?
Patients and providers need an honest and open dialogue and time and freedom to build a trusting relationship, not personally invasive paperwork.

The CDC doesn't really have a commitment to open dialogue. PEMS will result in inaccurate and unhelpful data, and there are very serious concerns associated with it.

Young people are having sex. They need to be able to talk about it and learn how to negotiate safer behaviors, not only in their sexual relationships, but also in their personal relationships in general.

Guidance on testing needs to reflect the different needs of different people and various populations. It also needs to address privacy concerns.

We need data on basic statistics of what's sexually "normal." We need to have a picture of what is everyone doing, not just the HIV associated (tested, positive, involved in prevention, etc.) community.