Published on January 4, 2008
HIV Confidentiality: HIV Confidentiality Experiences in practice and policy in New York State Slide2: What is the Problem? Early 1980s • HIV/AIDS identified with stigmatized U.S. populations - homosexuals - injection drug users - recently arrived immigrants (esp. Haitians) • A fatal disease • Leaders had to tackle their own initial prejudices • Standard public health plans were met with opposition: - to condom use and clean needle exchange - to wide-spread testing and partner notification • Conflict between protecting the public and the individual’s right to privacy was front and center — there it remains Sources: Bayer R. Public health policy and the AIDS epidemic: an end to HIV exceptionalism? NEJM. 1991;324:1500-1504. Initial Fears: Initial Fears When it was thought HIV disease was prevalent in ‘risk groups’ (as opposed to risk behaviors) questions were raised about transmission to others: Pressure to discriminate against people suspected of the disease, or those falling into ‘risk groups’: gay and bisexual men, IDUs, Haitians. Discrimination has included housing, employment. Civil libertarians pushed to keep information about HIV confidential HIV/AIDS STIGMA: HIV/AIDS STIGMA “HIV/AIDS stigma is manifested through discrimination and social ostracism directed against individuals with HIV and AIDS, against groups of people perceived to be or likely to be infected, and against those individuals, groups, and communities with whom these individuals interact.” Source: Herek, G.M., & Capitanio, J.P. 1998. Symbolic prejudice or fear of infection? A functional analysis of AIDS-related stigma among heterosexual adults. Basic Applied Social Psychology, 20(3), 230-241. 1988: New York State enacts Public Health Law, Article 27-F : 1988: New York State enacts Public Health Law, Article 27-F Protects confidentiality of those tested for HIV, exposed to HIV, infected with HIV. Requires people who take a voluntary test for HIV sign a consent form: the person understands what the test means and agrees to take it. 1988: New York State enacts Public Health Law, Article 27-F : 1988: New York State enacts Public Health Law, Article 27-F Requires that information about a person’s HIV status can only be disclosed if the person signs an HIV release form (with noted exceptions). Applies to individuals and facilities that provide health and social services to people with HIV or testing for HIV. Rationale of Confidentiality Law: Rationale of Confidentiality Law Provide safeguards to prevent discrimination or abuse of people who have been tested for or diagnosed with HIV/AIDS Provide environment of trust to encourage people with HIV to seek health care Exceptions to Law: Exceptions to Law Internal communications rule: Employees within an agency may have access to and share confidential HIV-related information without consent when employees need the information in order to carry out their authorized duties in providing services. No disclosure of patient HIV status should be made in public areas. Examples: leaving chart with HIV-related information out on desk, discussing HIV status of patient in front of other patients. Other cases: Minors: Other cases: Minors Physicians have the discretionary right to disclose a child’s HIV-related information to parents/legal guardian in order to arrange healthcare, unless the child has the authority to consent to the needed care. In case of suspected/confirmed domestic violence, it may be appropriate to withhold HIV-related info. if there is an expectation that this would result in harm to mother or baby. Pretest Counseling Requirements as of June 1, 2000: Pretest Counseling Requirements as of June 1, 2000 During Pre-test Counseling: Provide information about HIV reporting and partner notification Emphasize confidentially protections regarding HIV information Must obtain authorized consent of the patient consent form explains confidentiality law provides phone number to file discrimination complaint Provider Liability for non-compliance with confidentiality regulation: Provider Liability for non-compliance with confidentiality regulation By law, giving HIV information about a patient without consent or testing for HIV without written consent may be punished by a fine of up to $5,000 and a jail term of up to one year. This includes intentional AND unintentional disclosures Additional lawsuits have been settled on behalf of the plaintive. Old HIV Testing Norms 1988 –1990s : Old HIV Testing Norms 1988 –1990s HIV Counselors specially designated and certified through a 3-5 day training course. HIV testing offered at specialty centers. Specially designated written consent form Long HIV counseling sessions (which may included suicide assessment) Waiting period: 2-3 weeks for results. Positive results linked to case management programs. Anonymous testing option. New HIV Testing GuidelinesJuly 2005: New HIV Testing Guidelines July 2005 Streamlined: min. counseling, simple consent form. Emphasizing rapid testing. Integrate HIV C&T into ALL medical care. HIPPA form revised for HIV info. Increased HIV-related test reporting (designed to gather incidence, not just prevalence data). Challenges to HIV Confidentiality: Challenges to HIV Confidentiality 1997: Mandatory unblinding of newborn heelsticks for HIV antibodies (effectively discloses HIV status of all pregnant women) 1997: Nushawn Williams case: 20 yo male infects 16 females with HIV, 9 of whom are from Chautauqua County, NY 2000: Partner notification and mandatory HIV names reporting law enacted Is HIV confidentiality necessary?: Is HIV confidentiality necessary? Era of HIV exceptionalism over? HIV becoming ‘medicalized’? Is HIV less stigmatized? HIPAA: Covers HIV confidentiality In minority ethnic and rural populations, HIV stigma is thought to be higher than urban MSM communities. UNAIDS/WHO Guidance on Provider-initiated HIV Testing and Counseling: May 2007: UNAIDS/WHO Guidance on Provider-initiated HIV Testing and Counseling: May 2007 Ensuring an Enabling Environment: “VCT must include measures to prevent compulsory testing and unauthorized disclosure of HIV status…Women may be more likely than men to experience discrimination, violence, abandonment, or ostracism when their HIV status becomes known…HIV testing [should be] accompanied by informed consent…” HIPAA Overview: HIPAA Overview What is HIPAA? Health Insurance Portability and Accountability Act of 1996 (HIPAA) HIPAA also included “Administrative Simplification” provisions to encourage and protect the electronic transmission of health-related data Medical record confidentiality is a focus of concern HIPAA Overview: HIPAA Overview Why was legislation needed? Public concerns about privacy bring demands for greater security: 20% of consumers believe their health information has been used or disclosed inappropriately. 17% of Americans report that they have taken action to avoid the inappropriate use of their information, including providing inaccurate information to health care providers, changing physicians, or avoiding care altogether. The Association of American Physicians and Surgeons reports that 78% of its members have withheld information from a patient’s record due to privacy concerns and 87% of its members have had a patient request that information be withheld. Informed Consent for HIV Testing: Informed Consent for HIV Testing New debate: Written Informed Consent or not? New York State Law is currently at odds with CDC recommendations CDC Revised HIV C &T Guidelines: Sept. 22 2006: CDC Revised HIV C &T Guidelines: Sept. 22 2006 Aspects of recommendations that remain unchanged from previous recommendations: HIV testing must be voluntary and free from coercion. Patients must not be tested without their knowledge. HIV testing is recommended …for persons seeking treatment for STDs. Access to clinical care, prevention counseling, and support services is essential for persons with positive HIV test results. CDC Revised HIV C &T Guidelines: Sept. 22 2006: CDC Revised HIV C &T Guidelines: Sept. 22 2006 Aspects of these recommendations that differ from previous recommendations: Screening after notifying the patient that an HIV test will be performed unless the patient declines (opt-out screening) is recommended in all health-care settings. Specific signed consent for HIV testing should not be required. General informed consent for medical care should be considered sufficient to encompass informed consent for HIV testing. CDC Revised HIV C &T Guidelines: Sept. 22 2006: CDC Revised HIV C &T Guidelines: Sept. 22 2006 Aspects of these recommendations that differ from previous recommendations: Prevention counseling should not be required as a part of HIV screening programs in health-care settings. Prevention counseling is strongly encouraged for persons at high risk for HIV in settings in which risk behaviors are assessed routinely (e.g., STD clinics) but should not have to be linked to HIV testing. Communicable Disease Investigation and Control: Traditional Approach: Communicable Disease Investigation and Control: Traditional Approach Mandatory reporting of cases By name No anonymous testing Disease investigation Contact tracing Screening (tuberculosis, syphilis) Disease interventions Contact ("Partner") notification Education Treatment Isolation and quarantine Due to HIV “exceptionalism” and stigma these steps were not taken in the initial stages of the epidemic. The History of HIV Reporting and Partner Notification: The History of HIV Reporting and Partner Notification 1981: required population-based surveillance data on Acquired Immunodeficiency Syndrome (AIDS) HIV reporting/Partner Notification Legislation was signed on July 7, 1998 Significant changes were made based on public comment Final regulation published in NYS register on March 22, 2000 HIV Reporting: HIV Reporting As of June 1, 2000 providers must report INITIAL diagnosis of HIV-infection, HIV-related illness and AIDS. Laboratories also report data: HIV test [positive WB results] CD4 [<500 cells/µL] Detectable viral loads. Rationale of Names Reporting: Rationale of Names Reporting To gather epidemiological data on HIV in New York State To document trends in HIV for research a and interventions To document need for funding Why use names?: Why use names? Tracking System Unique Identifiers vs. name “Confidential HIV reporting by name did not appear to affect use of HIV testing” JAMA, Vol280, pp.1421-1426, October 28, 1998 Built on proven AIDS surveillance system Highly secure system- data only used for public health purposes Data can not be shared with other agencies Old Public Health Debate: Old Public Health Debate Protecting Public Interests vs. Protecting Individual Rights Recent example: smoking cessation laws What is Partner Notification?: What is Partner Notification? Doctors are required to discuss with HIV-infected patients about their options of letting sexual and needle sharing partners know that they may have been exposed to HIV. Known contacts of the index case must be reported to the NYSDOH on the required form. Partner Notification Pretest Counseling : Partner Notification Pretest Counseling Sample suggestions: “If you were to test positive, what are your thoughts about letting your partners know they may have been exposed to HIV?” “If you test positive, we will work with you to think about the best ways of letting your partner(s) know.” Partner Notification Pretest Counseling : Partner Notification Pretest Counseling Sample suggestions if client has a known contact (for example, name of spouse in chart): “If you were to test positive, we would be required to report your known contacts to DOH. We would work together on the best plan to notify them.” Options forPartner Notification: Options for Partner Notification Notification conducted by public health staff from State Department of Health program (PNAP) with patient consent (maybe conducted anonymously; requires identifying information.) Assisted Notification (clinic provider/counselor and/or CNAP notifies partner) Self-notification Non-consented notification of a partner by physician or authorized NP or PA. Options for Partner NotificationNon-consensual Notification: Options for Partner Notification Non-consensual Notification Article 27-F NYS Public Health law (unchanged by new regulations). Physician concludes that notification is medically appropriate and contact has significant risk of infection. All options have been explored yet provider feels the notification has not occurred. Physicians have the discretion-but not the legal duty-to notify partner without consent. Name of the index case is not revealed. Patient given choice between provider or CNAP to make disclosure; index case’s name will not be revealed. Results: Partner Notification inNYS: 2005 : Results: Partner Notification in NYS: 2005 Cases from a Primary Care Clinic : Cases from a Primary Care Clinic A two clinicians at a community clinic are discussing a patient’s HIV negative test results in an exam room with an open door. An HIV positive patient is in the area and can hear them identify the name, age, and reasons for testing of the patient under discussion. Patient feels he knows who they are discussing. Patient complains to the administration that he feels confidentiality at this clinic is not respected. Patient does not return to the clinic and is lost to follow-up. Cases from Primary Care Clinic : Cases from Primary Care Clinic John has been a HIV patient in the clinic for years; everyone at the clinic thinks he has girlfriend, Marie, who also comes to the clinic. John’s doctor asked if he has told his girlfriend about his HIV status. He says that he does not have a girlfriend. He says that Marie is just his friend. Marie becomes pregnant. When she is asked to get tested for HIV as part of prenatal care, she refuses. She acknowledges that John is the father. Cases from Family Clinic: Cases from Family Clinic 12 year old asks her doctor the name of her disease. Does she have the right to know or do her parents make that decision? Father takes 5 year old HIV positive child to clinic. Father is unaware of child’s status. Mother refuses to disclose. Mother pleads with staff not to tell father about child's diagnosis.