In Australia, doctors must notify public health authorities of new cases of HIV/AIDs. However, strict confidentiality requirements apply to the testing, treating and notification of HIV, protecting the identity of patients.
As part of its review of the New South Wales Public Health Act 2010, the Department of Health is considering whether to remove these confidentiality requirements from NSW public health legislation. Is this a move that should be welcomed by health care professionals and patients?
Infectious disease notification
All Australian jurisdictions have laws that require the notification of certain infectious diseases. In NSW, notification requirements can be found in the Public Health Act 2010, which creates five categories of diseases that must be reported by medical practitioners, pathology laboratories, and hospitals, including HIV/AIDs.
Section 56 of the Act places confidentiality requirements on information relating to a patient’s HIV status. There are three main components to section 56:
- Notifications for HIV/AIDs must be made in a de-identified format;
- A person’s identifying details must not be used when arranging a diagnostic test for HIV (except in hospital situations or with the person’s consent);
- A person who, in the course of providing a service, obtains information that an individual has been tested for HIV or has HIV/AIDs, must take reasonable steps to prevent that information from being disclosed. However, the information may be disclosed to a person involved in the provision of care of the patient, so long as it is relevant to the provision of such care.
Section 56 allows for disclosure of identifying information in certain other circumstances, including if there are reasonable grounds to suspect that failure to disclose the information would likely be a risk to public health. This allows for the Secretary of the Department of Health to identify and manage HIV positive individuals who pose a risk to the health of others, including (as a last resort) through public health orders that allow for the mandatory treating and detention of patients living with HIV.
Review of the Public Health Act 2010 (NSW)
NSW Health recently published a discussion paper on the review of the Public Health Act 2010 (NSW). The Ministry’s preliminary view is that HIV-specific confidentiality protections should be wound back. The paper notes several difficulties that stem from the confidentiality requirements for HIV notification:
- De-identified notification increases the likelihood of duplicate testing and errors in notification, and impacts negatively upon the collection of epidemiological data, surveillance, and monitoring, and follow-up care of HIV positive patients;
- Confidentiality requirements create a barrier to testing for HIV in combination with testing for other conditions as there are different consent procedures for HIV tests and other tests; and
- They prevent healthcare professionals from being informed of patients’ HIV status where they are not providing treatment directly related to the patient’s HIV condition, but it would assist in providing care to know about the patient’s status (given that HIV and ART treatment have a range of health implications).
The policy of de-identifying HIV/AIDs notifications was first developed in the 1980s, at a time when most HIV infections occurred in gay men and there was considerable stigma and discrimination against the gay community and those living with HIV/AIDs. At that time, no effective treatment options were available for HIV/AIDs, making it a terminal condition. Many activists, clinicians, and community organizations were strongly against notification, and confidential notification provisions were adopted to encourage at-risk individuals to access HIV testing and care without fear of recrimination or discrimination.
The situation has changed significantly since then. Anti-retroviral therapy (ART) has made HIV a manageable, chronic condition, and has demonstrable benefits in preventing onwards transmission. Community attitudes towards the gay community and people living with HIV have changed considerably over the past 30 years, assisted by the introduction of laws that address discrimination and privacy concerns.
The discussion paper lists a number of benefits that would flow from rolling back HIV-specific confidentiality requirements:
- Named notification would enable more accurate epidemiological data on HIV to be collected, for example, by allowing for better linking of HIV notifications with notifications of other conditions, which would assist with tracking and managing HIV co-infections; and
- It would potentially allow better service provision and care of people living with HIV: one outcome would be that it would enable public health officers to follow up with HIV positive patients directly; liaise with clinicians; and refer people living with HIV to the relevant health services.
However, there is significant disagreement between NSW Health and HIV activists over whether named reporting would improve epidemiological data and access to care. Advocates argue that while named reporting may provide some benefit, this would be outweighed by its impact on privacy, testing, surveillance, and treatment.
HIV remains heavily stigmatized, and many people living with HIV continue to experience discrimination. These concerns are particularly relevant given that NSW criminalizes individuals with HIV (and other STIs) who fail to disclose their condition to their sexual partners.
Named reporting may deter people from being tested for HIV, particularly people from culturally and linguistically diverse backgrounds, recent migrants, highly sexually active men with multiple STIs, sex workers, and non-gay identifying men who have sex with men. People diagnosed with HIV may also be less willing to report sensitive personal information (e.g., injecting drug use), particularly if it could be used for law enforcement purposes. This would undermine the effective care of people living with HIV, as well as the quality of population-level data.
Advocates recognize that making information about a person’s HIV status, co-morbidities, and treatment regimen more widely available in clinical settings could improve care outcomes. However, they say that there are not enough examples of non-disclosure causing adverse effects to warrant the proposed changed, and the amendment would undermine the right of people living with HIV to disclose their HIV status to medical and healthcare workers at a time of their choosing.
Winding back “HIV exceptionalism”?
Writing on the legal environment of sexual health care practice, Roger Magnusson describes HIV as an “exceptional STI,” with unique legislation regulating counselling, diagnosis, and reporting of HIV. The central concerns of this legislation are the provision of supportive treatment and maintaining patient confidentiality.
Professor Magnusson describes how some countries are now winding back HIV exceptionalism, for example, in the US, CDC guidelines now recommend opt-out screening for all patients, i.e., patients are notified that screening will take place unless they decline consent. Some states, such as California, have adopted these recommendations, and while anonymous testing is still offered in many states, named HIV reporting is now the norm.
Notification of HIV/AIDs is a contentious subject, engaging issues around rights to privacy and autonomy, as well as on the role notification plays in data collection, testing, and treating. Many jurisdictions are streamlining the legal treatment of HIV testing with that of other infectious diseases; the question is whether NSW will – or should – do the same.