January 9, 2011 Leave a comment
Acquired Immunodeficiency Syndrome (AIDS) is a disease of the immune system caused by the human immunodeficiency virus (HIV), which renders people vulnerable to life-threatening infections and cancers. In the early 1980s, during the nascent days of the AIDS epidemic, there was significant social stigma and fear associated with AIDS infection, as the disease first manifested itself through outbreaks of rare cancers among young gay men in California and New York. HIV was discovered and identified as the AIDS-causing virus in 1984, and prevention education efforts thereafter have focused on HIV testing as a key tool for enabling individuals to best protect themselves and others from infection or transmission. Given the ongoing social stigma associated with AIDS, however, privacy and confidentiality provisions associated with HIV testing remained paramount, and had to be addressed before testing could become widely useful among populations who were fearful that they could be harmed, persecuted, institutionalized or otherwise discriminated against as a result of a positive HIV test.
New York State enacted a seminal piece of legislation in 1989 as Public Health Law Article 27-F (Pub. Health L. §§ 2780-2787): “HIV Testing and Confidentiality Law.” The initial Article 27-F provisions have been amended since their passage, and were significantly supplemented in 1998 with the passage of New York State Public Health Law Article 21, Title III, (Pub. Health L. §§ 2130-2139): “HIV Reporting and Partner Notification Law,” the provisions of which went into effect in 2000. These laws specifically applied to, and had to be implemented by: physicians and others authorized to order lab tests or make medical diagnoses; persons who receive HIV-related information in the course of providing health or social services; persons who receive HIV-related information pursuant to a release; or health care providers or other medical services plans.
The seemingly simple concepts behind these laws were subject to a great deal of interpretation and ambiguity. While both Article 27-F and Article 21, Title III have been successfully implemented, the machinery required to support their provisions is far more complicated and loophole-ridden than that originally envisioned by the pioneering legal and social activists who first advocated for the confidentiality provisions now embodied in the New York State’s health laws. In the 2007 article connected to the link below, I discuss the challenges, complicating factors, approaches taken in the implementation process, and outcomes associated with applying the noble idealism embodied in Article 27-F in the crucible of the “real world” in which State and nonprofit agencies operate. The article also provided broad lessons learned and strategy recommendations for those tasked with implementing public policy, especially when they will be blazing trails while they do it.