Date: Tue, 27 Sep 1994 15:36:52 -0400 (EDT)
From: David Casti <disc@vector.casti.com>

Submitted by: Stephen Shapiro <sshapiro@minerva.cis.yale.edu>



NY AIDS Institute zap

The Issue:

For the past two years, AIDS activists have been fighting NY State and 
CIty Department of Health's plan to conduct CD4 ("t-cell") lab-based 
name-reporting. This would mean labs  report to the StateDepartment of 
Health as a *suspect AIDS* case the name of everyone who has a CD4 count 
less than 200.

This will be the first time  labs will have AIDS defining and reporting 
reponsibility separated from a doctor's opinion.

Since nearly everyone in treatment for HIV gets CD4 counts, and 95% of 
all CD4 counts are for people with HIV, there is grave concern that this 
reporting begins the functional way for name HIV reporting, and greatly 
increases the possibility of its disclosure with its risks of violence 
and discrimination.

The Background:

In January 1994 Dr. Mark Chassin, NY Commissioner of Health told the New 
York Times that *consensus was essential* in making a policy about CD4 
lab reporting. The NY AIDS Advisory Council then negotiated an agreement 
with the NY City and State Health Departments for a Memorandum of 
Understanding on a date certain implementation for Unique Identifiers, a 
system of confidential coding of names, already in use in several states, 
and an opt-out clause.

In March, 1994 Commissioner Chassin came to the Council and asked for 
approval to break that compromise. After hearing what New York Newsday 
called the *vehement objections* of advocates from diverse backgrounds, 
the Council rejected Chassin's proposal.

Later that day, Chassin said  CD4 lab-based name-reporting would start 
regardless of the Council's decision (he kept his word on this). He did, 
however, promise a state-funded pilot program to study Unique Identifers.

In a July meeting, the NY DOH AIDS Institute (responsible for the Request 
for Proposals, or RFP), promised representatives from GMHC, the Long 
Island Association for AIDS Care, and ACT UP/NY  the Unique Identifier 
Request for Proposals would be  ready for public bidding by early 
September.  The advocates present that day  insisted on community 
inclusion in the process and the formation of a Community Affairs Board 
(CAB). 


The Action:

It's nearly October, no RFP is in sight, and the AIDS Institute is not 
returning phone calls.

To stop this malaise,

ACT UP/NY is calling on the community to phone, fax, or e-mail Dr. Nilsa 
Gutierrez, Director of the AIDS Institute,

from Tuesday, September 27 to Friday September 30,


and tell her that DOH should JUST DO IT!

1) Stop delaying the Unique Identifer for HIV/AIDS confidentiality 
program, and

2) form a Community Affairs Board to oversee the process and prevent 
further bureaucratic delays.

e-mail address (the favored mode) is:
<NSG02@albnydh2.bitnet>   (that's a zero not an O)

phone is       212/613-2492

fax is          212/613-2555




Q:    But I don't live in NY, why should I do this?

A:   Because HIV/AIDS confidentiality is mainly a state by state affair, 
the states look to each other for what the limits are. If one high 
seroprevalence state like New York can blatantly disregard complaints 
about invasive surveillance methods, then the others will fall in line. 
Similarly, a good confidentiality policy in one state serves as a model 
for others.

     By helping New Yorkers with HIV in this instance, you help everyone.


for more information call ACT UP/NY at 212/564-2437