new fed reporting rules may destroy SOME patients' medical privacy

[David Farber <dave () farber net>]

Begin forwarded message:

From: Jim Warren <jwarren () well com>
Date: December 22, 2005 7:08:35 PM EST
To: Dave Farber <dave () farber net>
Subject: new fed reporting rules may destroy SOME patients' medical  
privacy

I can't think of a much more effective way to make sure that people  
at risk AVOID-at-all-costs, the risk of getting tested for HIV/AIDS.

Reminds me of Niemoller's famous quote -- "First they came for the  
Communists, but I was not a Communist, so I said nothing. Then the  
came after ... Then ... Then when they came for me, there was no one  
left to stand up for me."  But of course, they'd never require  
information on EVERYone's private sex-lives.  Would they?

--jim

> New HIV Reporting Guidelines Could Endanger Privacy AIDS Group Warns
> by Doug Windsor, 365Gay.com  New York Bureau
>
> (New York City) An advocacy group for people with HIV/AIDS is  
> warning that proposed new federal regulations could endanger the  
> privacy of PWAs.
>
> The Centers for Disease Control is implementing the Program  
> Evaluation and Monitoring System (PEMS). It requires unprecedented  
> surveillance requirements for federally funded HIV prevention  
> programs.
>
> Among the regulations is a provision requiring local AIDS groups  
> that get federal funding to provide the CDC with details about  
> every patient, including their sex life and partners.
>
> But the agency has not said how it will assure the confidentiality  
> of the data.
>
> The Community HIV/AIDS Mobilization Project (CHAMP), a national  
> advocacy group, said Wednesday that the new regulations should  
> raise alarm bells.
>
> It notes that some legal experts believe could be subpoenaed in  
> states where there are laws that criminalize HIV transmission.
>
> CHAMP warns that this could deter people from being frank in  
> counseling, and could prevent people from accessing services and  
> getting prevention support.
>
> "We are eager to collect necessary information that will help us  
> continue to improve our prevention efforts but we share widespread  
> public concern about government monitoring," Julie Davids,  
> Executive Director of CHAMP said in a statement.
>
> "PEMS prioritizes invasive data collection above the actual work of  
> HIV prevention itself, threatening to turn educators into  
> interrogators and overwhelm already understaffed HIV prevention  
> agencies with paperwork."
>
> Davids also noted that abstinence-only programs are barely  
> monitored by the CDC and are getting  funding increases "despite no  
> evidence that they prevent HIV, and much documentation that they do  
> spread misinformation."
>
> Davids called for a postponement of deadlines for all programs to  
> become PEMS-compliant and for fundamental changes in the program.  
> She said that the CDC needs to assure that community providers who  
> speak out will not be penalized with funding cuts.
>
> ©365Gay.com 2005



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