5. Appropriate use of HIV case reporting

Overview

Some countries have recently considered whether they should implement a policy of named HIV case reporting. Under such a policy, health care providers would be required to report by name all HIV cases diagnosed by them to a health authority. (Other forms of case reporting involve the use of a code, sometimes called a "unique identifier", for each case; or the reports provide information on cases anonymously.)³⁴ This has been promoted as a means to open up the HIV/AIDS epidemic; decrease denial; improve access to prevention and care services for individuals affected by HIV/AIDS; and obtain more accurate information as to prevalence and incidence of HIV and AIDS for surveillance purposes.

³⁴For more, see Annex 1, Definitions of important terms

While AIDS case reporting has been implemented in most countries, implementation of HIV case reporting has been much more limited. Many countries started to collect information of HIV cases at the beginning of the epidemic, but later dropped the practice when the infection became widespread. Reasons for dropping the practice were the high cost and complexity of maintaining the system, the lack of effective treatment or preventive options once people were discovered to be HIV positive, and the little additional benefit for surveillance purposes.

However, there has been a recent trend in high income countries to employ HIV case reporting, as well as AIDS case reporting. This trend is based on the fact that, where anti-retrovirals are available, the access to, and use of, these drugs has dramatically decreased the incidence of AIDS, resulting in AIDS cases no longer being an accurate base by which to calculate back to HIV incidence and prevalence. Furthermore, in these countries, case reporting of HIV cases helps to monitor access of HIV positive individuals to appropriate services and treatment, including the use of anti-retrovirals.

However, neither the reporting of HIV cases, nor the reporting of AIDS cases, for the objectives listed above, has been useful in low income countries. For surveillance purposes, the data collected based on case reporting of HIV or AIDS has been problematic. In general, HIV/AIDS surveillance involves the routine collection, analysis and dissemination of accurate epidemiological information regarding the spread and distribution of HIV infection. Surveillance is an essential part of the response to the epidemic entailing a number of important objectives:

· to monitor trends in prevalence and incidence of HIV in populations

· to assess disease burden in terms of morbidity and mortality due to HIV/AIDS

· to be able to plan HIV prevention and care programmes directed at the particular epidemiological situation

· to provide data for estimates and projections of the number of people living with HIV/AIDS and AIDS-related mortality

· to monitor the impact of the national response to the HIV/AIDS epidemic

· to reinforce commitment to AIDS prevention and care through awareness of the numbers affected and their needs.

But the data obtained from HIV and AIDS case reporting in many countries has not been useful for the stated objectives of surveillance largely because:

· less than 10% of HIV positive people have been tested for HIV so most are unaware of their status

· many people do not want to know their status, given the stigma and discrimination attached to it, and the fact that they will not have access to treatment or care

· among health care providers, there are problems with under-diagnosis and under-reporting of HIV and AIDS cases, including the fact that health care providers may be reluctant to report cases by name for reasons of confidentiality and privacy

· on the other hand, where the information is provided anonymously to avoid breaches in confidentiality, there is potential for multiple reporting of the same case

· there is insufficient capacity and infrastructure by which to maintain confidentiality either for named or coded reporting which further deters people presenting for tests.

These conditions make HIV case reporting in resource poor countries unreliable.

Advocates for HIV case reporting also point to potential benefits in terms of prevention and increased access to care. However, reporting HIV cases to health authorities does not necessarily lead to any additional benefit for either the client or the community, and may divert resources from more effective prevention and care strategies. Thus, where resources are limited, the appropriate balance must be found in the use of various prevention and care strategies that involve different levels of costs and impact. Strategies such as public information campaigns, youth education, and distribution of condoms are relatively cost-effective ways of reaching large numbers of people for prevention and care purposes. Case reporting, however, is expensive, and does not increase access to prevention and care services in itself. For it to be effective in prevention and care terms, it must be meaningfully integrated into a host of HIV-related services, such as voluntary testing and counselling, health and social support services for those HIV positive and/or presenting with AIDS-related illnesses, and greater access to HIV-related drugs and treatments. Resources should be put into developing these services before they are significantly diverted to case reporting.

In light of these concerns, UNAIDS and WHO recommends HIV case reporting only where certain conditions exist. These are:

· widespread access to, and use of, HIV testing

· protection against breaches in confidentiality so as not to deter testing and reporting

· access to effective care, including anti-retrovirals, and

· the capacity within the health system to collect accurate data, and to compile, analyse, and act upon it, including follow-up with cases.

However, even where these conditions do exist, HIV case reporting needs to be associated with HIV prevalence studies in sentinel population groups and behavioural date to provide data of sufficient quality to be able to monitor trends in the epidemic and the burden of disease.

In general, UNAIDS and WHO recommend that a country chooses appropriate HIV/AIDS surveillance in light of its needs and resources. This would be surveillance that is cost-effective given the financial and human resources available; refines as well as reinforces prevention and care efforts; maintains confidentiality; optimises access to available treatment options, where this is possible; and results in regular and widespread dissemination of information on HIV/AIDS to the population in non-stigmatising ways that help to open up the epidemic, decrease denial and discrimination, and increase commitment to prevention and care efforts. In resource poor countries, depending on the state of the epidemic, this is likely to involve a form of sentinel surveillance (see description in Annex 1, Definitions of Important Terms). The WHO/UNAIDS Guidelines for 2^nd Generation HIV Surveillance, 2000 provides a comprehensive framework for consideration of surveillance options.³⁵

³⁵WHO and UNAIDS, 2000. ????

Recommendations for appropriate use of HIV case reporting:

· In resource-poor countries where access to HIV testing and effective treatment are limited and where there is insufficient infrastructure to maintain confidentiality, avoid case-based reporting of HIV and employ sentinel surveillance within the framework of second generation HIV surveillance.

· Where there is wide access to, and use of HIV tests, established surveillance systems for communicable diseases, security and confidentiality of data, and access to anti-retroviral treatment, consider the use of HIV case reporting to provide information to monitor HIV incidence and prevalence, and to increase access to treatment, patient compliance, and long-term follow-up.

· Ensure that the surveillance methodology employed does not interfere with prevention or care activities, for example, by allowing breaches in confidentiality that would make people afraid to take advantage of voluntary counselling and HIV testing services.

· Ensure confidentiality and security of information through the development of policy; infrastructure (e.g. data-storage and transmission systems that ensure the physical security of data; electronic security of computer files); increased capacity of health professionals to receive, report, and use data; and legislation that protects against breaches of confidentiality.

· Increase public confidence in surveillance and protect the right to privacy through the enactment of regulations, policies and laws that preclude the non-public health use of the data.

· Where named-based or coded reporting is employed, assess periodically the extent to which incomplete reporting, incomplete diagnosis, or duplication of cases is compromising the utility of the received data.

· In the use of sentinel surveillance that is unlinked, ensure that personal identifiers are removed from blood specimens in a way that does not permit re-linkage.

· Strengthen the means and frequency by which the results of surveillance are disseminated in ways that open up the epidemic; reinforce prevention and care programmes; reduce fear, stigma and denial; and avoid the further stigmatisation of certain groups of people, e.g. migrants, refugees, sex workers, men having sex with men.