CRITICAL LETTER TO THE NYC COMMISSION ON HIV/AIDS REGARDING THREATS TO CONFIDENTIALITY
VIA EMAIL AND REGULAR MAIL
June 10, 2005
HIV/AIDS Commission Report
125 Worth St., CN 28
New York, NY 10013
Re: Report of the New York City Commission on HIV/AIDS
Draft Report of May 19, 2005
ACT UP/New York takes issue with some of the recommendations of the Report of the New York City Commission on HIV/AIDS, draft of May 19, 2005 (hereafter Draft Report).
Our organization agrees with many of the Commissions goals, such as wider availability of condoms, access to condoms in prisons, review of laws governing injection drugs and sex work and city funding of culturally sensitive prevention materials. We support relevant AIDS education in schools, although the Commission should specifically recommend condom demonstrations. However, we oppose expanding partner notification, weakening the HIV Confidentiality Law, and requiring the reporting of individuals viral load and CD4 test results to state health authorities. Those proposals would divert scarce resources from effective HIV prevention efforts.
The Draft Report asserts that the epidemiology of the epidemic has changed dramatically over the past 25 years. Draft Report, p. 4. While new treatments have vastly improved the quality of life for hundreds of thousands of Americans living with HIV/AIDS, the epidemiology has not significantly changed. HIV remains an incurable yet preventable disease, spread through sexual contact or the sharing of hypodermic needles. As the Draft Report points out, the stigma associated with HIV still exists. Draft Report, p. 18.
The Commissions main strategy to managing the HIV epidemic boils down to identifying HIV-infected individuals through testing and the disclosure of the test results to the individual; to the government, through mandatory names reporting; and to sex and drug partners through partner notification. As the executive director of the HIV Law Project remarked, My concern is that this sets the stage for government involvement in private medical decisions. Andrew Jacobs, New York Proposes Measures to Slow the Spread of AIDS, NEW YORK TIMES, May 24, 2005, p. B4.
ACT UP favors the widespread availability of voluntary HIV testing, with pre- and post-test counseling, as a means to informed choices concerning treatment and prevention. However, testing, in itself, is not treatment or prevention. Conspicuously absent from the Draft Report is any discussion about the successful HIV prevention campaigns that have sharply reduced the rate of HIV transmission. Those programs emphasize that all persons, regardless of HIV status, must protect themselves through using condoms and clean needles. They empower individuals to make responsible decisions, and do not rely on coercive interventions. The Commission must affirm the importance of promoting safer sex and safer drug use in achieving prevention.
As did virtually every AIDS organization to which members of the Commission are affiliated, ACT UP/New York fought the passage of the 1998 Names Reporting/Partner Notification Law. We cited studies showing the ineffectiveness of such programs in reducing the transmission of HIV and sexually transmitted diseases, and raised the potential for domestic violence and other dangers to the index patient.
The Draft Reports claim that partner notification is an effective prevention strategy, Draft Report, pp. 15-16, is belied by the reports statement that only 20% of all persons who test positive provide the name of a partner through HIV partner counseling and referral services (PCRS) and less than 20% of partners of PLWHA get tested through PCRS. Draft Report, pp. 7-8. Targets of partner notification, fearing or resenting the intrusion, do not always consent to HIV testing or heed the health authoritys advice. There exist better means to communicate messages of treatment and prevention. Expenditures for partner notification would deprive effective prevention programs of scarce funds. ACT UP asks that the Commission eliminate this recommendation.
WEAKENING THE CONFIDENTIALITY LAW
The landmark HIV Confidentiality Law of 1988 requires voluntary HIV testing, informed consent before the administration of an HIV test, pre- and post test counseling and confidentiality of HIV-related information. N.Y PUB. HEALTH LAW. §2780 et seq. The Commission writes that, In addition to recent proposed regulatory changes, the current law governing voluntary counseling and testing needs to be studied further to determine if changes to legislation are required to facilitate normalization of testing. Draft Report, p. 21.
ACT UP strongly opposes weakening the law. The Commission has not shown how the HIV Confidentiality Law impedes access to testing. Indeed, the Draft Report acknowledges that Voluntary testing, informed consent, right of refusal, and confidentiality safeguards must be preserved. Draft Report, p. 21. The availability of rapid HIV antibody blood and saliva tests heighten, not diminish the need for those protections.
The Draft Report backs proposed regulations to provide the option of printed information in lieu of traditional fact-to-face pre-test counseling. Draft Report, p. 22. Whether an individual is having a rapid or standard HIV antibody test, the chance to inform that person about HIV prevention and treatment must not be squandered at any stage of the process. The failure of some persons to return to providers to get their test results increases the importance of that type of contact. ACT UP urges that the Commission call for the retention of pre-test counseling.
We question the reports use of the words normalization and routine in describing increased access to HIV screening. HIV remains an ultimately fatal, if treatable, infection carrying considerable social and psychological baggage, for which reason imposing certain conditions for testing make sense. There is nothing abnormal or unusual in requiring informed consent and counseling before testing for HIV. Those terms exacerbate the taboos and stigmas surrounding HIV, HIV testing, and persons with HIV/AIDS, and we urge that the Commission strike such language from its report.
Each year, legislators in Albany introduce dozens of bills for mandatory HIV testing of specific populations or involuntary disclosure of HIV status. Any proposal to abridge the HIV Confidentiality Law would open the door to consideration of those epidemiologically unsound measures.
The Draft Report proposes offering HIV testing in hospital emergency rooms and inpatient settings, as well as at bathhouses, sex clubs, pick-up bars, large circuit parties, and gay pride events . Draft Report, p. 21. In order to make plain that HIV testing is voluntary and consensual, and that discrimination against persons with HIV is illegal, the report must stress that medical or other services must not be denied to individuals who refuse HIV testing and that persons must not be pressured into HIV testing because of their demographic class.
CD4 AND VIRAL LOAD NAME REPORTING
In order better to assess treatment resources, the Commission backs systematic citywide monitoring of patient status, at least through laboratory tests which are already being performed (viral load and CD4) and would be facilitated by recently proposed regulatory changes. Draft Report, pp. 23-24. The New York State Department of Health has promulgated emergency regulations requiring laboratories to report individuals CD4 counts and viral loads. Emergency Rule Making, HIV Laboratory Test Reporting, NEW YORK STATE REGISTER, May 11, 2005 (hereafter State Register), pp. 9-12. ACT UP sees the risk of wrongful disclosure of confidential medical information as outweighing any epidemiological gain from reporting CD4 counts and viral loads.
The state health department maintains that, With the recent documentation of a HIV strain with resistance to three drug classes and rapid progression to AIDS in a NYC man newly diagnosed with HIV, the need for a comprehensive surveillance system designed to provide this information on a population basis is pressing. State Register, p. 10. However, because CD4 and viral load data in the HIV surveillance registry would only be reported of patients receiving medical care, this information would be of limited utility.
The danger of misuse of surveillance data is ever present. In February 2005, the Palm Beach County, Florida health department accidentally e-mailed its confidential name-based HIV surveillance registry for Palm Beach County, Florida to 800 persons. A List of AIDS Names Is E-Mailed In Error, NEW YORK TIMES, February 21, 2005, p. A16. Moreover, the state legislature could direct the divulging of information on a theretofore confidential name-based list with various parties, such as prosecutors.
ACT UP/New York shares the concern of the New York City Commission on HIV/AIDS about the unacceptably high incidence of HIV transmission. We favor proactive prevention programs that reinforce the obligation of everyone engaging in high risk activities, whether or not they are infected, to take appropriate precautions. Such programs have a history of success. We question the Commissions emphasis on HIV testing as a prevention strategy in itself, and its endorsement of the coercive, even if ostensibly benign, state interventions to control the epidemic. Such measures have never been demonstrated to work.
ACT UP New York Michael K. Swirsky
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