NAMES REPORTING POSITION
see ACTIONS at bottom of page
THEY WANT YOUR NAME ON A LIST
New York State says it wants to know how many people have HIV and where the AIDS epidemic is going. It wants to do this by COLLECTING YOUR LAB AND HIV TEST RESULTS. Your name will be put on a government list.
But we've known for years where the AIDS epidemic is going:
AIDS IS STILL HERE AND RAGING OUT OF CONTROL.
Why doesn't the Government know this? Probably for the same reason there's still no condom education in schools, still no needle exchange, still no universal healthcare, and still no cure: MURDEROUS, CRIMINAL NEGLIGENCE.
More data, no action. People with HIV will be persecuted and demonized, driving the epidemic back underground and trashing civil rights protections. These come next: mandatory partner notification and criminalization.
THIS IS NO WAY TO FIGHT AN EPIDEMIC! __NAMES REPORTING IS BAD PUBLIC HEALTH POLICY!
No names._ No numbers._ No lists. __Fight AIDS!__ ACT UP!
TRACKING IS NOT TREATMENT.
MAKING LISTS IS NOT PREVENTION.
COLLECTING NAMES IS NOT A CURE.
WE DIE. THEY COUNT BODIES.
ACT UP/NY opposes identified HIV case reporting to government health departments. This includes reporting the names of people who test positive for HIV as well as reporting individual cases through so-called "unique identifier" codes (UIs"). Both reporting systems as currently discussed in New York state would require the creation of a centralized registry. As a result, these systems pose considerable risks for people with HIV, raise doubts about the data they might collect, and distract from the implementation of proven HIV prevention methods.
Identified HIV case reporting will not yield good data. Studies show that many people with HIV will not seek testing if their names enter government lists. Other studies suggest that UIs will also deter testing. With such a skewed picture of the epidemic, how do health officials expect to monitor sero-prevalence? How will collecting names give useful information about at-risk behaviors, prevention efforts and treatment access?
Identified HIV case reporting is not the only, or even most effective, way to gather data. ACT UP/NY continues to support the collection of accurate data about the epidemic. Cohort studies collect information about the epidemic without coercion. Several databases already exist with records for hundreds of thousands of people with HIV: Statewide Planning and Research Cooperative System, ADAP/ADAP+, Welfare Management System, NYS and NYC TB Case Reports, AIDS Intervention Management System, Medicaid, NYC Division of AIDS Services and the NYS Cancer Registry--all of these in addition to anonymous testing sites.
Identified HIV case reporting will not bring people earlier into the treatment process. The advent of combination therapies suggests that people with HIV may wish to consider treatment as early as possible. But the deterrent effects of identified HIV case reporting systems means more people will not seek treatment. For example, poor people, IV drug users and people of color have historical reasons to fear their names on government lists. Immigrants who lack social security numbers and/or are worried about their residency status will be shut out from the healthcare system entirely.
Identified HIV case reporting will not guarantee security. In Florida, over 4,000 names were released to newspapers. With information readily available on the internet, UIs can be cracked by anyone with access to databases, a computer and the encryption algorithm. Further, access to these lists can be granted through legislative acts. Illinois legislators wanted to identify HIV-positive healthcare workers using their registries. Discrimination against people with HIV still exists and may not be remedied through the Americans With Disabilities Act.
Identified HIV case reporting will not increase efforts to end the AIDS crisis. A considerable amount of data has already been gathered regarding at-risk populations. Yet the government record on implementing proven prevention and education methods is a dismal failure. There are no guarantees that counting HIV cases will concomitantly occur with an increase in funding or the political will to enact these life-saving programs. Counting cases only guarantees the reallocation of the same funding pie. In fact, with the risk of deterrence, it is quite likely that heavily affected areas will get even less funding.
Identified HIV case reporting will lead to other, more insidious AIDS policies. Many proponents of names reporting also want to implement mandatory partner notification. Several bills in Albany would criminalize HIV transmission. The Coburn Bill in the US Congress would create a national HIV registry unparalleled among other diseases. Collecting names of people with HIV will only make it easier to implement these policies.
Centers for Disease Control and Prevention is behind this latest push for names reporting. Should identified HIV case reporting be implemented in New York, many people will avoid testing, some will see their behavior criminalized, and still others will face deportation. AIDS service organizations will be pitted against each other for shrinking budgets as Congress falsely perceives a declining epidemic. People with HIV/AIDS will be forced to chose between their privacy and not knowing their sero-status. It is time for government bureaucracies to stop creating diversions and divisions and implement proven strategies to stop the AIDS crisis.
In consideration of all of the above, ACT UP/NY believes that the implementation of identified HIV case reporting systems in New York is backward, sinister, and will hinder efforts to combat the AIDS epidemic effectively.
INSTEAD, WE DEMAND:
1.) NO IDENTIFIED HIV CASE REPORTING OF ANY KIND. The need for more data on the epidemic is a real one. However, discrimination on the basis of HIV is likewise a very real possibility. Names reporting and UIs will deter people from getting tested for HIV. In this instance, the needs of scientists, public health officials and people with HIV are not at odds: the interests of everyone involved are best served by opposing identified HIV case reporting.
2.) NO CRIMINALIZATION OF HIV. NO MANDATORY PARTNER NOTIFICATION. AIDS is not a criminal act. It is a disease, and should be treated accordingly. People with HIV/AIDS have the same right to privacy and dignity that is afforded people without the virus. Any changes to the current AIDS confidentiality law must not put people with HIV in a compromising position.
3.) EXPANSION OF ANONYMOUS HIV TESTING SITES. Although New Yorkers have a right to anonymous HIV testing, testing sites are few and far between, resulting in abysmal waiting periods for people who wish to get tested. Anonymous HIV testing sites must be free, accessible and immediately available for all New Yorkers. Modifications of testing questions should include questions about repeat testing and techniques of statistical analyses should be developed to provide a correction for current sero-prevalence figures.
4.) REDOUBLED EFFORTS FOR HIV PREVENTION. Safer sex information, condom availability, needle exchange programs and prevention programs for prisoners all save lives. Yet such programs remain woefully inadequate as a result of government inaction. Tracking people once they contract the virus is too late in the process. Efforts must be focused on keeping people HIV-negative.
5.) ACCESS TO STATE OF THE ART TREATMENTS. FINDING A CURE FOR AIDS. The most current advances in AIDS treatments remains a considerable financial burden to most. Funding for programs like ADAP and Medicaid must be increased to ensure that people with HIV/AIDS are not turned away from potentially life-saving treatments because of economic concerns. And while these advances are important, they still do not constitute a cure for AIDS. Finding a cure must once again be a top priority in the fight against the disease.
February 23, 1998
Date: Fri, 19 Jun 1998
Holy shit. NY is now a names reporting state?! They say in AIDS, as goes New York, so goes the nation. If I could, I'd fly there today to march in the massive demonstration I hope everyone is planning. And get your lawyers to tie it up in the courts until it's overturned. The time for Resist the List civil disobedience is NOW. -- Richard Jackman, Seattle, WA USA (Union of Speechless Anarchists)
>See below an AP report:
N.Y. Passes HIV Notification Bill
ALBANY, N.Y. (AP) -- New York doctors must report the names of people living with HIV and AIDS and notify their sexual partners under legislation approved early today.
The state Assembly passed the sweeping notification measure 112-34 after two hours of heated debate that pitted civil liberties concerns against public health needs.
Under the legislation, health care workers must try to get infected patients to identify any former sexual partners who may be at risk and then notify them. Currently, doctors have the option of telling partners about the virus in some cases, but health workers say they fear lawsuits if they do so.
The state Senate had already passed the bill, which advocates say is among the most far-reaching in the nation.
Critics say requiring such reporting will deter some people from seeking testing and treatment. Public health officials argue the notification program could help stem the spread of HIV.
Thursday, March 26, 1999 8:30 AM
NY State Department of Health
NY State HIV Advisory Council
5 Penn Plaza, West 34th Street
@ 8th Av, New York City
The Mayersohn/Velella Bill would require the reporting of names of HIV positive individuals to local health departments, which would then notify the spouses and known sexual partners of these individuals. Two other Bills by Kaufman/Maltese would impose severe criminal penalties (which would include a prison term) on anyone who, knowing they are HIV positive, fails to disclose this information to a sexual or drug using partner.
PROTEST to Repeal New York's Coercive
Partner Notification Law
Governor George Pataki, Assembly Speaker Sheldon Silver and other state lawmakers are dangerous to New York's fight against HIV/AIDS. They have made mandatory names reporting and partner notification for HIV the law in New York. This will drive people away from HIV testing and treatment.
PROTEST to Repeal New York's
Coercive Partner Notification Law
A half dozen activists, in protest of New York's new HIV reporting and partner notification law, took over on Wednesday the office of a top state AIDS official until late afternoon. The activists issued a list of six demands, which were also distributed to the media. They asked legislature to rescind the notification law, which has not yet gone into effect, and extend a 45-day comment period on the proposed legislation. The new law requires doctors to report cases of HIV infection to state officials and inform sexual partners if the patients refuse to do so themselves.
SEVEN ACTIVISTS TAKE OVER DEPARTMENT OF HEALTH COMMISH' OFFICE TO DEMAND REPEAL OF PARTNER NOTIFICATION LEGISLATION
Albany, NY- Five days before the end of the
public comment period on the newly passed partner notification
legislation, 7 activists took over Acting Commissioner of the
New York State Department of Health, Dennis Whalen's
office. The group's demands included an immediate request from the Department of Health (DOH) to the State Legislature for the immediate repeal of legislation requiring partner notification, the names reporting and an extension of the public comment period including hearings where the community can give input into the specific regulations.
The activists refused to leave his office until the New York State Department of Health not only publicly stated its opposition to partner notification, but also renewed its commitment to REAL AIDS prevention including needle exchange and safer sex education in public schools.
"It was important for AIDS activists to not let this law and public comment period pass without some way of expressing our outrage" said, Eunice Scott of Fed Up Queers. The Department of Health refused to provide any public hearings despite the formal request by several large AIDS service organizations and AIDS advocates.
According to Mel Stevens of ACT UP, "The extension of the public comment period is necessary because the specific protocols for those populations that this legislation will affect most dramatically were either not released at all, or just released two weeks ago." Among the list of 6 demands is a call for a comprehensive plan for how the DOH will notify partners of people under 24 years old and those who have been a victim of domestic violence. This joint action was planned by members of ACT UP and Fed Up Queers, 2 groups committed to direct action from New York City.
"The regulations that the DOH have released would include a person's name to be reported several times during the course of his/her treatment. We strongly oppose the registry of a persons HIV status and the way this protocol is written there will be multiple opportunities for a breach of confidentiality.", said Kenneth Corbin. Members of the group stated that there is already enough information on the status of the epidemic. According to Emilia Levy, "What we need is a commitment to those things that we know works like needle exchange and safer sex education, not a collection of names and an expensive program that strips funding from necessary supportive services for people with AIDS".
1. THE NEW YORK STATE DEPARTMENT OF HEALTH MUST IMMEDIATELY EXTEND THE
45-DAY PUBLIC COMMENT PERIOD ON PARTNER NOTIFICATION REGULATIONS TO A
MINIMUM OF AN ADDITIONAL 45 DAYS. THERE SHOULD BE PUBLIC HEARINGS
ORGANIZED THROUGHOUT THE STATE WITH CONSULTATION FROM COMMUNITY BASED
ORGANIZATIONS, ADVOCATES AND ACTIVISTS AFFECTED BY HIV/AIDS.
2. THE NEW YORK STATE DEPARTMENT OF HEALTH MUST IMMEDIATELY CONVENE A
COMMITTEE OF COMMUNITY BASED ORGANIZATIONS, ADVOCATES AND ACTIVISTS WITH A
HISTORY OF PROVIDING SERVICES TO, AND IN-DEPTH KNOWLEDGE OF, YOUTH AGES
11-24 IN ORDER TO DEVELOP A PROTOCOL THAT WILL ADDRESS THE VERY SPECIFIC
CONCERNS OF CONTACT TRACING AND NAMES REPORTING THAT FACE THAT POPULATIONA
AND THIS PROTOCOL SHOULD BE WRITTEN DIRECTLY INTO THE REGULATIONS.
3. THE NEW YORK STATE DEPARTMENT OF HEALTH MUST IMMEDIATELY CONVENE
AND A COMMITTEE CONSISTING OF COMMUNITY BASED ORGANIZATIONS, ADVOCATES AND
ACTIVISTS WITH A HISTORY OF PROVIDING SERVICES TO, AND IN-DEPTH KNOWLEDGE
OF, VICTIMS OF DOMESTIC VIOLENCE, TO REVIEW AND REVISE THE RECENTLY
RELEASED DOMESTIC VIOLENCE PROTOCOL THAT WILL AFFECT THE VERY SPECIFIC
CONCERNS OF CONTACT TRACING AND NAMES REPORTING THAT ADDRESS THAT
POPULATION AND THIS PROTOCOL SHOULD BE WRITTEN DIRECTLY INTO THE
4. THE NEW YORK STATE DEPARTMENT OF HEALTH MUST BE COMMITTED TO FULLY
FUNDING ONLY THOSE PROGRAMS THAT CONSTITUTE AIDS PREVENTION SUCH AS NEEDLE
EXCHANGE, TREATMENT ADHERENCE, HOUSING FOR HOMELESS PEOPLE LIVING WITH
HIV/AIDS, PERMANCY PLANNING PROGRAMS AND SAFER SEX EDUCATION IN SCHOOLS
BEFORE ANY FUNDING FOR PARTNER NOTIFICATION OR ANY OTHER INNIATIVE.
5. THE NEW YORK STATE DEPARTMENT OF HEALTH MUST IMMEDIATELY END THE
CRIMINALIZATION OF POSESSION OF SYRINGES AND PROVIDE SAFER SEX EDUCATION IN
ALL NEW YORK STATE PUBLIC SCHOOLS.
6. THE NEW YORK STATE DEPARTMENT OF HEALTH MUST IMMEDIATELY MAKE A
MOTION TO REPEAL PARTNER NOTIFICATION LEGISLATION TO THE NEW YORK STATE
LEGISLATURE AND RENEW ITS COMMITMENT TO REAL AIDS PREVENTION AND PUBLIC
|see additional info and struggles:||RESIST THE
PMB 567, 1122 E Pike Street
Seattle, WA 98122-3934
voicemail: (206) 517-2616
see also: Activists' Responses to Names Reporting __(very long activist discussion)
see also: Workers at AIDS Facility Leave Confidential Documents on Sidewalk 3/16/2000
- Myths and Facts about HIV Names Reporting
- Congressional Legislation (The Coburn Bill)
- Reauthorization of the Ryan White CARE Act _UPDATE 2000
- NAMES News Media Clips