The NSW Government is conducting a review of the NSW Public Health Act 2010. The Act is designed to monitor, investigate and prevent infectious diseases, and to improve public health in NSW. Along with an extensive range of functions, the Act lists diseases which doctors, pathology labs and hospitals are required to notify to NSW Health. All notifiable diseases, and there is an extensive list, are reported using the name and address of the person with the disease. However, HIV is the exception. It is reported in a de-identified format using a 2×2 code of the first two initials of the person’s first and last names. This requirement was introduced in the late 1980s at a time when there was no effective treatment for HIV and limited benefits to HIV testing. At the time, HIV infection was considered a terminal conditions and it was thought that named notification would negatively impact on gay men, people who inject drugs and sex workers, seeking testing and care. The requirement to de-identify HIV notifications was incorporated in the 1991 Act and carried through to the 2010 Act.
However, we no longer live in the 1980s and in many ways the requirement to de-identify HIV and AIDS diagnoses is outdated. We have effective and tolerable free medication for HIV and evidence clearly demonstrates the overwhelming individual and public health benefits of HIV treatment, linkage to care, and making sure that people with HIV continue to be clinically monitored and not lost to follow-up. As HIV increasingly becomes viewed as a chronic manageable condition, community attitudes have shifted. In addition, laws have been implemented to protect privacy and limit discrimination by those who cling to outdated notions of HIV infection.
It is important to note that when the 1991 Public Health Act commenced, there were no privacy laws in NSW. Since that time, privacy of health information has been substantially strengthened across the health system through the Health Records and Information Privacy Act 2002 and protections in the Act limit the use and disclosure of health information. Substantial penalties apply to health and allied professionals who breach privacy provisions or discriminate against people with HIV when accessing care and support.
Benefits of Named notification of HIV and AIDS
In response to these environmental changes, the NSW Health’s preliminary view is that there are more benefits than harms in moving to named notifications of HIV and AIDS, with the key benefits being: improved patient follow up and linkage to treatment and care; improved retention of patients in care; better understanding of the relationship between HIV and STIs; and better identification of risk factors that may assist in effective prevention strategies.
We agree that named notification will bring substantial benefits to people with HIV. However, it would be essential that protections are written into the Act to stop the potential for subpoenaing of sensitive health information in criminal cases. It is also important to acknowledge that if named notification of HIV and AIDS are implemented in NSW that it will only apply to new diagnoses and will not be retrospectively applied.
Ban on identifying details being used for a HIV test
The second change being proposed is the ban on a person’s identifying details being used when requesting an HIV diagnostic test. Currently this only applies if the test is to determine whether a person has HIV. Where testing is done for non-diagnostic purposes, such as HIV viral load, CD4 counts or drug resistance testing, the person’s name can be included on the pathology request form. The different requirements for testing cancels any protections provided by privacy provisions in the Act and also present a barrier to testing in certain situations.
Benefits of changing restrictions on sharing of HIV information between doctors
The third proposed change relates to special protections on the sharing of HIV health information by health care professionals. Currently, the NSW Public Health Act can be read as meaning that HIV information can only be disclosed or shared with another health care professional who are directly involved in the treatment and care of the person’s HIV infection.
This restriction impacts on the quality of health care received by people living with HIV who also have a range of other serious chronic health conditions. With increasing proportions of people with HIV managing multiple chronic health conditions as they age, HIV status has become an important factor in almost all medical and diagnostic consultations. Failure to take HIV into account can lead to a range of health conditions becoming worse.
The NSW Ministry of Health is therefore considering broadening the definition to allow disclosure for the purposes of all health care, with the caveat that HIV status must be relevant specifically to the nature of the medical care being provided.
Benefits of the removal of the requirement to disclose HIV status before sex
The final change being proposed relates to the requirement to disclose HIV status before sex. Currently, section 79 of the Act makes it an offence for a person with an STI to have sex with another person unless they inform the partner of the risk of transmission of the STI, prior to sexual intercourse taking place and the partner voluntarily accepts the risk.
However, the requirement to disclose, although applying to all STIs, unfairly targets people living with diagnosed HIV.
It can be argued that the requirement to disclose
- discourages HIV and STI testing;
- encourage anonymous sex (because if a person can’t be traced, they can’t be prosecuted) and
- results in discrimination where information can be used against the person with HIV.
There is no evidence that disclosure is effective in reducing HIV or STIs. In fact, disclosure may have negative impacts in HIV and STI prevention. Therefore in principal, NSW Health supports the removal from the Act of the requirement to disclose.
Based on all these points, Positive Life believes that the proposed changes will have more benefit to people with HIV than harm. However, we are aware that some members of the community will have concerns about the changes. To address these concerns, Positive Life NSW and ACON will hold a community forum to discuss the issues and provide an opportunity for concerns to be raised and discussed. At this forum, representatives from the NSW Ministry of Health will attend to talk about the proposed changes and to answer questions from the audience. Positive Life NSW looks forward to a robust and fruitful community discussion and your participation and involvement in this important law reform process.
The Community Forum will be held on Tuesday 24 May 2016 6.30-8pm at the NSW Teacher Federation 23-33 Mary Street Surry Hills.