Public Health Versus Civil Liberties: Washington State Imposes Hiv Surveillance and Strikes the Proper Balance

• Publication year: 2000

SEATTLE UNIVERSITY LAW REVIEWVolume 24, No. 3WINTER 2001

COMMENT

Public Health Versus Civil Liberties: Washington State Imposes HIV Surveillance

Robin Sheridan(fn*)

In Washington State, there are approximately 8,500 recorded cases of AIDS(fn1) or asymptomatic HIV.(fn2) It is estimated that there are an additional 6,000 to 8,000 HIV infected individuals residing in the state.(fn3) In 1996, HIV was responsible for the deaths of 15% of men ages 35-44, 13% of deaths among men ages 25-34, and 4% of deaths of women ages 25-34.(fn4) According to the Center for Disease Control (CDC), efforts to stop the spread of the disease are inhibited by individuals who remain unaware of their HIV status.(fn5)

On July 14, 1999, after extensive deliberations, the Washington State Board of Health unanimously voted to implement a system of HIV case reporting in the state.(fn6) The objectives of this plan include monitoring the spread of the disease and connecting HIV positive individuals with medical care and counseling.(fn7) On September 1, 1999, the new regulations in the Washington State Administrative Code went into effect.(fn8) The regulations mandate that health officials report all cases of certain specified infectious diseases,(fn9) including asymptomatic HIV infection, to local health departments.(fn10) Upon the adoption of the HIV surveillance program, Washington became the thirty-fourth state to mandate some form of HIV case reporting.(fn11)

Although Washington is not alone in its regulatory effort to stop the spread of AIDS, the recently adopted regulations stand apart from those imposed in other states. Among the states that have HIV surveillance programs, the majority mandate HIV case reporting by patient name. By contrast, Washington's HIV surveillance system achieves the proper balance between public health and civil liberties: by using a hybrid system of both unique identifiers and patient names in HIV tracking, Washington's health regulations protect the privacy interests of HIV infected individuals in a manner that encourages testing while still promoting AIDS awareness and maintaining accurate data to aid in controlling the epidemic.(fn12)

Under Washington's model, the reporting of HIV-infected individuals' names is limited to the local level.(fn13) Names are provided to county health officials who are responsible for encrypting patient medical data into codes.(fn14) Once codified, the data is released to state officials who are responsible for reporting to the CDC.(fn15) This procedure, which is new among states that employ methods of encryption, eliminates the possibility that sensitive medical data will be released to state government officials.(fn16)

This Comment examines the controversy surrounding the Washington HIV surveillance system in light of a long-standing conflict between public health concerns and civil liberties.(fn17) Part I of this Comment briefly describes the inception of the AIDS epidemic. Part II focuses on AIDS legislation and the justifications for surveillance. Part III discusses the tension between public health and civil liberties. Part IV describes AIDS' social stigmatization and deterrence. Part V addresses the nature of medical information and the potential for government misuse. Part VI describes the types of HIV surveillance available and the benefits and burdens which accompany both tracking systems. Part VII addresses the Washington State approach to HIV surveillance and the process by which the Washington legislature drafted the regulations.

I. AIDS-. The Inception of a Worldwide Crisis

In June of 1981, the first AIDS cases were reported.(fn18) "From 1981 on, the number of AIDS cases doubled every six months, concentrated largely but not exclusively in the urban centers of New York, Miami, Los Angeles, and San Francisco."(fn19) After receiving an increasing number of reports of pneumonia and rare forms of cancer, the CDC(fn20) reported the cause to be a transmissible agent spread in a manner similar to hepatitis B.(fn21) The CDC recognized this group of diseases as what is currently known as AIDS.(fn22)

AIDS typically appears in the young adult population.(fn23) The average age at the time of diagnosis is thirty-six.(fn24) The majority of HIV infections result from unprotected sexual intercourse with an HIV infected partner or from sharing needles with HIV infected persons. However, the face of AIDS is changing. AIDS is not, as previously thought, a syndrome isolated within the homosexual community. Rather, AIDS has infiltrated ethnic minority populations(fn25) and increased rapidly among heterosexuals.(fn26) Although incidences of infection are more prevalent in men than women, cases among women are rising steadily.(fn27) As HIV infection spreads among the female population, the virus finds its way into another generation as women transmit the virus to their infants prior to birth.(fn28)

Diseases that have virtually no effect on healthy individuals prove deadly to infected individuals.(fn29) HIV results in progressive damage to a person's immune system.(fn30) The virus leaves the body susceptible to numerous opportunistic infections that result in immunosuppression.(fn31) The culmination of this damage results in a manifestation of AIDS and, ultimately, death.(fn32)

In addition to a grueling process of psychical deterioration, victims of AIDS often suffer from social and emotional torment. Infected persons may fear social stigmatization and various forms of prejudice. These fears lead to feelings of isolation, depression, and a multiplicity of other psychological problems.(fn33)

In 1995, the AIDS epidemic reached a critical point as the number of reported AIDS cases exceeded one-half million.(fn34) Today, the CDC reports the number of HIV/AIDS-infected individuals in this country to be 753,907.(fn35) As the crisis continues, it is critical that states impose tracking systems in order to control and monitor the spread of the epidemic.

II. AIDS Legislation

State and national governments responded to the AIDS crisis through legislative measures.(fn36) In 1984, nationwide AIDS case reporting began.(fn37) Reporting the names of individuals with AIDS became a major part of a national effort to understand and control the AIDS epidemic.(fn38) Today, every state has statutes or regulations requiring laboratories to report the names of individuals with AIDS to health departments.(fn39) AIDS surveillance is widely accepted as one of a number of tools necessary to thwart the spread of the disease.(fn40)

In addition to the necessity for health services to halt the spread of AIDS, infected individuals' short period of survival is thought to outweigh any potential social risks stemming from AIDS case reporting.(fn41) Additional justification stems from the fact that individuals with AIDS are already part of the health care system.(fn42) The rationale is that reporting the names of people with AIDS will not have a deterrent effect on people currently receiving medical care.

Traditional AIDS surveillance focused on the most advanced stage of infection, which usually develops ten years after initial HIV infection. However, due to the length of time between transmission and the manifestation of AIDS, traditional surveillance statistics revealed only a small portion of the true picture of the epidemic.(fn43) It became obvious that, in order to truly grasp the extent of this epidemic, it was necessary to track HIV infection as well.

Advances in medical technology, such as Highly Active Anti-Retroviral Therapy (HAART), provided an additional justification for tracking HIV infections. HAART drastically changed the quality of life for people with HIV. Indeed, it brought about the very first decline in annual AIDS-related death rates since the inception of the disease.(fn44) Thus, as the medical field gained a greater understanding of the role HIV plays in the development of AIDS, the focus of case reporting shifted from tracking the appearance of opportunistic infections to identifying immunosuppression.(fn45)

Today, the focus of HIV reporting laws is not only persons who have full-blown AIDS, but also those who suffer from asymptomatic HIV infection.(fn46) In general, HIV reporting requires laboratories and health officials to report new HIV infections to state health authorities. HIV surveillance focuses on the earliest stages of infection. One major advantage in identifying infected populations sooner is that health departments are then more likely to link HIV positive individuals to health services, education, and partner notification programs.(fn47) Early tracking also provides a clearer picture of the number of people currently living with HIV, allowing officials to monitor the way in which the disease is spreading.

Despite the rationales offered in support of HIV case reporting, the issue continues to ignite political controversy.(fn48) While AIDS reporting is widely accepted, opponents of HIV reporting assert that its potential for harm outweighs public health concerns.(fn49) Opponents argue that fewer people will get tested due to their fear of public disclosure should they test positive for HIV.(fn50)

III. Public Health Versus Civil Liberties

It is the duty of health authorities to take measures to protect the public health. "Treating persons already ill, providing preventative therapies for...