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SPECIAL EDITION: August 17, 1998
fastfax is available by fax in the 215 and 610 area codes at no cost, or by mail anywhere for $20.00 per year, by calling 215-545-6868, and by E-mail by contacting and type the message SUBSCRIBE in the message section. Sources for some articles in this issue include Associated Press.The Pennsylvania Health Department has confirmed that it plans to require the reporting of all individuals testing positive for HIV infection in the near future -- but still won't say whether the reporting will be by name or by code. PENNSYLVANIA CONFIRMS HIV REPORTING PLANS
A state sources said that the state is considering a plan in which local health departments would collect the names of HIV+ people, but report the information to the state through a coding system which would keep the information anonymous on the state level. Actual names would still be held in confidential records on the local level, according to this source.
The state has tracked the names and other demographic and risk behavior information on all people formally diagnosed with AIDS since 1981.
Gary Gurian, former director of the Montgomery County Health Department and now a deputy health secretary for the state, confirmed the state's intentions on Friday, August 14th. He said that the purpose of the reporting was to assure earlier medical treatment for people with HIV. Critics have countered that while casting the HIV reporting decision in terms of better care for people living with HIV disease is better politics, few efforts have been made to assure funding for programs which directly link those identified to primary medical care from qualified AIDS specialists.
Others have said that the real motivation for state and local health authorities to track HIV infection is to improve the state's ability to compete for federal AIDS education and care funding, which is usually allocated on the basis of the numbers of people living with HIV/AIDS. Pennsylvania and Philadelphia have been forced to rely on informal projections on the prevalence of HIV infection in their areas because Pennsylvania, unlike almost 80% of the states, has not required HIV reporting.
Gurian said that the state had not yet determined when it would begin the HIV reporting program, or whether it would be by name or by a "unique identifier," which allows the individual to remain anonymous. Neither he nor other state officials have responded to a request from Philadelphia health commissioner Estelle B. Richman that the state hold public hearings throughout the state before deciding on how it will conduct the reporting.
Earlier this year, people living with HIV/AIDS and AIDS service providers were uniformly in support of some kind of HIV reporting system, but unanimously opposed to name reporting models. After the hearings, Richman informed the state of local opinion and called on state officials to seriously consider a reporting mechanism that would allow names to be withheld.
Pennsylvania is one of only 18 states that doesn't track HIV cases. There are 32 states that track the number of people with HIV. Only two states use codes instead of names to record HIV-infected people.
New Jersey has required HIV name reporting for several years, and New York State is also working on a name reporting mechanism for the coming year.
The Associated Press reported that within the next few months, the U.S. Centers for Disease Control will establish guidelines for Pennsylvania and other states on HIV surveillance and reporting, according to Dr. Helene Gayle, director for the CDC's National Center for HIV, STD and TB Prevention. CDC officials have strongly discouraged code-based reporting systems, saying that they allow for duplication and are even less effective at linking people to care services than is name reporting.
"Tracking AIDS cases no longer gives us a representative picture of the epidemic," Gayle said.
Anna Forbes, a Philadelphia AIDS activist who has championed code-based reporting systems for many years, said that studies show "people will avoid getting tested altogether" if they believe their name is going to be reported .
In Philadelphia, the debate on AIDS surveillance generally and HIV reporting in particular has been subject to public debate for many years.
Prior to 1988, few public funds were allocated to support the provision of AIDS-related services. The public health response to the AIDS epidemic was, in general, limited to the provision of limited HIV counseling and testing services to the community of men who have sex with men and education and prevention efforts such as public service announcements and small outreach programs.
With the expansion of the AIDS service system in 1988 to include medical and social services and HIV prevention campaigns based in community-based organizations, issues immediately arose about the responsibility of those agencies to report known cases of AIDS to the surveillance staff of the AIDS Activities Coordinating Office (AACO), as was required under Commonwealth law and the local public health code in effect in Philadelphia County, which, in effect, requires any Philadelphians who knows that another person has been diagnosed with AIDS to report that fact to the PDPH.
In response to almost universal rejection of such reporting responsibility by the community-based organizations then allied with AACO in the provision of AIDS-related services, in most instances, contractual provisions were modified to encourage such reporting but not to require it. CBOs argued that the obstacles facing people living with HIV/AIDS in accessing their services were already so severe that many would not seek their help if they also believed that the organizations were acting as "agents" for the surveillance function. They also argued that the reliance on doctors, clinics and hospitals to report diagnoses of AIDS was working adequately, and that through their efforts, most of those who were diagnosed with AIDS would be reported in any event by their primary medical care providers.
As a result, most client-level information available to AACO from service providers it supports with public funding is only provided under a coded system which protects the individual identity of the client receiving services.
Other efforts to obtain AIDS surveillance data through new mechanisms have also been pursued in Philadelphia. These have included policies which require agencies providing substance abuse treatment services, mental health and mental retardation services, and homeless shelters to report instances of contact with a person known to have been diagnosed with AIDS. In each instance, such proposals have been modified to prevent such reporting from all but primary medical care providers.
Similar efforts in the mid-1980s by emergency medical personnel, law enforcement agencies and prison personnel to be made aware of the HIV status of those with whom they may come in contact also gained attention, and resulted in policies preventing access to such information by such personnel.
In 1992, AACO obtained a federal grant from the Health Resources and Services Administration to field test two "unique identifier" alternatives to the reporting of AIDS diagnoses by name. The test was conducted in ten provider sites supported by Ryan White CARE Act funds throughout Pennsylvania, in collaboration with the Pennsylvania Department of Health. In 1993, AACO applied for funding from the CDC to field test a unique identifier for HIV case reporting, but funding was declined.
With the expansion of the formal definition of AIDS in 1993 to include those whose CD4+ levels are at 200 or less, PDPH instituted a policy which required area laboratories conducting such tests to report these results to the AACO Surveillance Unit. Profound outcry against the implementation of this policy has led to a delay in its formal implementation. Many advocates have also expressed doubt that the city has, in fact, delayed information of this surveillance mechanism, despite public statements to the contrary.
While Philadelphia has been fortunate to have experienced no incidents of release of confidential information in the database of the AACO Surveillance Unit, the inadvertent release of confidential information on the HIV status of participants in Philadelphia HIV Prevention Community Planning Group (CPG) in 1994 has deeply undermined community trust of the ability of AACO to guarantee confidentiality of HIV/AIDS-related information. In this incident, data on the HIV status of CPG members was obtained in order to guarantee the appropriate representation of people living with HIV/AIDS in the community prevention planning process. An internal report which listed this information, as well as other confidential data on the sexual preferences, organizational affiliations, and other personal information on CPG members was accidentally distributed by an AACO consultant at a public meeting of the CPG, leading to a series of public protests and media attention that for a time greatly disrupted the operations of AACO.
This incident, while isolated and not involving confidential surveillance data, is routinely identified by PLWAs and advocates as an example of the kind of actions, even though accidental, that can violate the trust which is essential to the effective implementation of surveillance efforts.
Advocates argue that modern, computer-based encryption techniques make the use of unique identifiers a viable alternative to name reporting.
Two states, Maryland and Texas, currently use unique identifier systems to track HIV reports. Analyses of the efficacy of the efforts in these two states, while providing important information in the names reporting debate, has varied depending on the source of the analyses.
The Maryland program, using the assignment of a random alpha-numeric code based primarily on Social Security numbers to each person obtaining an HIV antibody test, was the subject of a report issued by the American Civil Liberties Union (ACLU), which has officially endorsed HIV reporting but has opposed the use of names in the reporting process.
The ACLU report, The Maryland Lesson: Conducting Effective HIV Surveillance With Unique Identifiers, concludes that a unique identifier system can provide a sound basis for HIV surveillance, and is a viable alternative to name reporting. The report, which the ACLU says it has distributed to distribute to state and federal health officials nationwide, examines data compiled by the Maryland AIDS Administration, the state agency charged with tracking HIV cases. The data includes information on HIV-positive test results submitted to state laboratories from June 1994 to December 1996, the last month information is available.
The report looked at the two main criterions for determining if an HIV reporting system is viable: "completeness rate" (percentage of cases reported with all necessary information) and "match rate" (how well the system corresponds to the state AIDS registry, a list of all reported full-blown AIDS cases.) During the last five months of 1996, the report found that Maryland's system rose to a completeness rate of 76.5 percent, a figure that the ACLU says is sufficient for the goals of HIV surveillance, and which is says fares competitively with CDC data from states with HIV name reporting. The ACLU report states that Alabama and Arizona, states with far fewer cases of HIV and AIDS -- and therefore considered easier places to track new cases -- had match rates between 79 to 90 percent.
However, CDC researchers evaluating both the Maryland and Texas programs have stated that "these UI systems provided less complete data and may not reduce confidentiality concerns," according to an article in the January 9, 1998 issue of Morbidity and Mortality Weekly Report.
The CDC researchers said that a 3-year evaluation of the two systems "revealed several problems with these UI systems, including a high number of reports with incomplete codes (approximately 30-40%), low rates of completeness in reporting (approximately 25-50% complete), difficulty in conducting follow-up on specific cases, and the absence of behavioral risk data in this system."
CDC officials also said that they suspect that the system may not protect patients' confidentiality any better than name-reporting systems. In order to provide follow-up information, healthcare providers need to use lists or other means to link the patients with the UI. "The UI approach complicates efforts to collect this information and increases the number of lists of HIV-infected persons that could be disclosed in a breach of confidentiality."
Only 3% to 26% of reports are incomplete in the 31 states where doctors use the patient's name to report data to the state, according to the CDC. The name is then removed before encrypted data are transmitted to the CDC.
One problem with UIs is that many medical files have incomplete information on the Social Security number, so doctors can't use the information in the UI, the CDC said. And doctors must maintain a system to match UI with patient information so they can fill in any missing information later on. According to the new report, only 44% of doctors in Maryland kept such logs. And in Texas, only 60% of UIs could be matched to a client record, the CDC said.
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