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II. Standard (Named) HIV Reporting

As part of its process for analyzing evidence on the effects of HIV reporting, the HIV Reporting Task Force identified by consensus five (5) important public health goals, below, that members felt should be important criteria by which to judge effects of HIV reporting. I have added a sixth (6) goal, based on the last meeting/discussion of our group:

#1.	To get the maximum percent of HIV+ persons to know their HIV serostatus.
#2.	Accurately determine the extent and movement of HIV infection, identifying infections in new as well as in traditional at risk groups.
#3.	Connect as many HIV+ people as possible into the care system.
#4.	Maintain the highest levels of individual privacy and confidentiality for HIV+ people.
#5.	Accurately assess resource needs and optimize effective use of resources for HIV prevention and care services.
#6.	Expend as few resources as possible on surveillance, leaving most resources for prevention and care services.

Proponents of both standard (named) reporting and unique identifier (UI) HIV reporting, tried to clarify how each option would further or potentially detract from these goals.

• Practically all public health partners (and most participants in the community hearings held in various settings in the state) now seem convinced that HIV should somehow be monitored, more than just AIDS, and that such monitoring, if accurate, would provide better evidence about the "front-end" of the HIV epidemics.

The standard (named) HIV reporting best promotes Washington State’s public health goals because:

• Standard (named) reporting is the simplest way for providers to report cases of HIV infection to public health (Goal #6), because: 1) providers (physicians, nurse-practitioners, etc.) can simply report data they already have, without having to encode cases; 2) providers already know and are used to using standard (named) reporting methods for other reportable conditions; and 3) incomplete reports which labs and providers often submit could be promptly and efficiently checked against current data or completed by direct contact with providers. In contrast, under a unique identifier (UI) system, in order for public health to acquire accurate records (Goal #2), including only one entry for each case, all providers and labs would have to use a standardized coding system, consistently and correctly (like condoms must be used for high levels of effect). Otherwise, the same case reported by multiple providers might be interpreted by public health as being multiple cases, rather than one case, resulting in over-counting. In the two states, Maryland and Texas, whose use of UI reporting systems has just been reported, data were incomplete in 29% to 38% of cases, requiring public health to attempt to contact case reporters to determine if a case was a duplicate and to complete the case report. (Often codes applied to cases were so incomplete that there wasn’t enough information to even attempt contacting the provider.) Similarly, our own experience in Washington State with UI-coded lab results (for persons with fewer than 200 T4 cells, indicative of AIDS) has also shown high levels of incomplete data; fully 57% of cases initially investigated as new by epidemiologists turned out to be already known (M. Ryland, Washington State HIV-AIDS Epidemiology Section, personal communication). This greatly increases the time required for epidemiologists to document cases and for providers to respond to their investigations, disincenting providers from reporting and engendering provider resistance. Thus, provider and laboratory staff would need to undergo expensive and time-consuming training in the consistent and correct use of the UI coding algorithm and to tolerate frequent calls from epidemiologists to check newly reported cases.
  
  
• Standard (named) HIV case reporting will achieve the most accurate and complete data on the extent and movement of HIV infection, providing the best basis for requesting and justifying resource needs to Congress and other funders (Goals #2 & 5). This method of reporting cases is the only tried and true method of disease surveillance known to epidemiology. Although given our increasingly technical and computerized world, it would seem possible to achieve complete and accurate surveillance with some form of UIs, currently using UIs for disease surveillance is still experimental. The recently reported results of the CDC’s (nearly 1 million dollar) study of UI systems in Maryland and Texas have shown these systems to be inadequate. Although Maryland is continuing to try to monitor HIV using UIs, Texas has decided to adopt named HIV reporting. Hawaii is rumored to be considering a UI system for HIV surveillance. Development and evaluation costs for UI systems (believed to be larger than named systems, which are simply extensions of current name-based AIDS surveillance) ought not to be taken from either prevention or care resources, but should be allocated separately by governments.
  
  
• States with standard (named) HIV reporting have accurate HIV surveillance data that better reflect the "front-end" of the epidemic and better monitor its movement into new populations, better than AIDS case surveillance data. HIV reports include a higher percentage of cases in women, people of color, and adolescents & young adults, compared to AIDS reports. (Goal #2)
  
  
• Creating and maintaining separate lists of patients could jeopardize client confidentiality (counters Goal #4). Such list keeping was required of providers and labs in Maryland and might have been needed in Texas had their UI system been adopted. Such lists compromise confidentiality more than public health registers since procedures and protections in providers’ and lab settings are known to be less secure than those used to protect public health case-reporting data. The most stringent legal protections of privacy apply to government-held health information (including records maintained by state and local health departments) and particularly to HIV data., Washington and virtually all states protect the privacy of government-held data by statute; and, like most states, Washington has also enacted HIV-specific privacy legislation that imposes stricter standards for HIV information. Washington State Administrative (WAC) codes require state and local health department personnel to maintain disease report records in a confidential manner. Violation of these codes is punishable by a fine of $5,000 and/or imprisonment for up to one year. Case report data are not subject to release under the Freedom of Information Act nor obtainable by subpoena. The federal government offers an assurance of confidentiality for surveillance information about HIV infection and AIDS, prohibiting the use of personally identifiable data for any purpose other than that for which it was provided.
  
  
• Standard (named) reporting would help public health assure that persons with HIV infection receive complete and accurate counseling about the nature of their condition, and about their options for care and other services. This assures that persons with HIV "know" (to the fullest extent possible) their HIV positive serostatus (Goal #1). Knowing the names of cases would make it easiest (Goal #6) for public health staff to contact providers to be sure that HIV seropositive persons learned all that they needed to learn (Goal #3). This information is vital from a personal and public health perspective. Individuals benefit because complete and appropriate client-centered counseling reduces the risk of acquiring new sexually transmitted diseases (STD), and because early and aggressive treatment of HIV reduces complications and improves survival. In benefit of public health, studies suggest that client-centered counseling and health education by public health practitioners reduce the risk of HIV transmission.
  
  
• Standard (named) reporting would also help to assure that persons substantially exposed to those with HIV infection learn of their exposure and receive effective counseling about their own need to undergo HIV testing (Goals #s 1, 3, & 5). Partner Notification (PN) is a public health service established in the middle of this century (before HIV/AIDS) which has a value (relative to other prevention strategies) that depends on a case’s infectiousness, benefit from treatment (which in HIV has recently increased greatly), and productivity in identifying new cases of HIV infection. Partner notification is particularly cost-effective in lower HIV seroprevalence settings in locating and counseling unknowingly seropositive persons – from 10% to 35% of partners contacted & tested..... (serves Goals #1, 2, & 3). In Sweden, PN is considered "one of the most efficient ways of finding persons who are unaware of their HIV serostatus" (serves Goal #1). Partner notification cannot be done effectively without permitting providers to more routinely report cases to public health. Currently in Washington State, most private providers admit to giving only lip service to PN. Public health can only be told of cases when they indicate that they would not be willing to notify their sexual or needle-sharing partners. The Washington State Medical Association adopted a resolution on HIV reporting at its 1997 annual meeting of delegates, in part because physicians wanted to be able to report cases by name to public health for PN services, as is done for other STD.
  • By definition and guidelines,,, PN is a voluntary (not coercive) service, and PN never divulges the identity of the index client to persons notified of their exposure.
  • Only public health staff generally receive specific training in PN. Most private care providers have neither training nor experience in providing this service for patients. There have been reports that some providers in notifying partners have violated standard procedures, including divulging index client (person testing HIV+) identity. If such providers could more clearly refer cases to public, they would not feel the need to take such actions themselves.
  • In PN, the trained public health specialist motivates the index client to consider who needs to be notified and then to either notify exposed partners him or herself (patient referral, which should be confirmed through client follow-up), or to provide partners’ identifiers so that the specialist can notify them (provider referral).
  • By state regulation, identifiers of partners to be notified are destroyed (shredded) after 90 days (Goal #4).
  • Studies show that PN is generally very acceptable both to index clients and to the persons public health notifies of their exposures.
  • Most notified persons generally undergo HIV counseling and testing16 (serves Goal #2).
  • Although PN can be accomplished by the index, or by the client’s care provider, it is best and most effectively done by trained public health specialists (Goal #5); studies show that leaving notification of partners up to index clients is quite ineffective.
  • Although it can be possible to notify partners even when index client identity is unknown, this requires clients to report to or call public health for services and many clients – without a clear description of this service by trained staff – will not contact public health.
  • If requested by the index client, public health staff could provide home visits to provide PN services; the service to partners is frequently delivered through outreach which may include on-site HIV counseling and testing, eliminating the need for extra visits by clients and their partners. (serves Goals #1 & #3).
    
    
• Standard (named) reporting would enable public health to monitor viral loads of some HIV seropositive persons in particular high risk situations (e.g., dually or triply diagnosed persons with mental illness or substance abuse problems). If viral loads are not being obtained regularly or indicate in-effective treatment or sub-optimal prevention, such persons could be offered prevention case-management to re-connect them with care and otherwise assist them (Goal #3). This is a typical public health function, similar to the public health approach to tuberculosis control, and multiply diagnosed and disadvantaged persons are typical public health target populations.
  
  
• Standard (named) HIV reporting would enable public health to identify and address problems in health care systems with appropriate evaluation and treatment of persons with HIV infection (Goal #3). This could b e accomplished by reviewing data on groups of HIV seropositive persons within care systems (e.g., Group Health Cooperative, or other managed care plans, or individual providers’ patients).

Will standard (named) HIV reporting decrease the number of persons who seek HIV counseling and testing (C/T), particularly those at high-risk of infection, or those with HIV infection who seek care?

• Standard (named) reporting of HIV is unlikely to substantially decrease those (even high-risk persons) who seek HIV C/T because:
  • most (two-thirds) high-risk persons considering HIV C/T are unaware of their states’ laws and regulations, and only a few (2%) who are aware cite reporting as their chief obstacle to testing. These findings came from an important (MESH) study performed by the University of California San Francisco, interviewing over 2500 persons from 9 states, including five (5) which required HIV reporting by name, two (2) where HIV was reported by UIs, and two (2) in which HIV was not reported. These persons were not interviewed at HIV testing sites, but rather in venues known to be frequented by high-risk persons, such as gay bars and streets of high-risk setting. A second study from Missouri showed only 4% cited fear of being reported as a reason to avoid or delay testing. Still another study reviewed numbers of persons testing for HIV before and after implementation of named reporting for persons testing HIV seropositive and found no consistent impact of reporting on HIV testing volumes. In fact, testing numbers actually increased in most of the states studied. Finally, although one might have predicted a fall in HIV testing volumes would follow the attempted release of names acquired through AIDS case surveillance in Florida in 1996, if anything, there was an increase in HIV testing. The main barrier to seeking HIV counseling and testing appears to be reluctance to recognize and confront the possibility of testing positive and one’s risk behavior, far and away above the concerns of being reported. The ACLU report in opposition to public health’s recommendation to report names mostly cites studies done before 1995-96 when the clinicians’ understanding of, and ability to profoundly suppress, HIV infection through combination drug treatment became reality. These earlier studies demonstrated a fear of HIV names reporting incommensurate, at that time, with the only slight benefits of HIV identification and treatment, predominantly with the original anti-retroviral drug, AZT, zidovudine. On that basis, public health and most community physicians opposed HIV reporting by name. However, the indications for comprehensively evaluating and treating HIV are now as strong as the evaluation and treatment of AIDS was when it became reportable.
  • People would still be able to obtain testing anonymously in each region of the state; and
  • People can also be tested through home testing, another anonymous option. Although the fear of reporting may cause some persons to avoid or delay seeking HIV C/T, the evidence for a substantial or sustained effect is lacking, even within high risk populations.

AIDS case reporting by name in all 50 states has not been felt to decrease the willingness of persons with AIDS to seek care, and there is widespread agreement that AIDS case surveillance in the U.S. is more complete than for any other reportable disease. Although most persons with HIV are less symptomatic than persons with AIDS, as noted above, the current guidelines for treatment now clearly make it as important for them to seek care as for persons with AIDS. Thus, given the growing awareness of these highly successful treatments for HIV, it seems less and less likely at this point that reporting will substantially reduce the willingness of persons with HIV to seek needed care.Injection drug users, according to providers who have great experience providing them drug treatment, report that they "could care less" whether their names are reported to the government (Ron Jackson, Evergreen Treatment Services, Seattle, personal communication).

REFERENCES:

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² Texas Department of Health, Bureau of HIV and STD Prevention. Unique identifier reporting for HIV infection surveillance. November, 1997.

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⁹ 42 U.S.C. 242m(d).

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