The NSW Department of Justice has released an Options Paper considering whether to impose ‘mandatory disease testing’ for people whose bodily fluids come into contact with emergency services personnel. You can find more details of that consultation here.
This is my personal submission:
Wednesday 31 October 2018
To whom it may concern,
Thank you for the opportunity to provide a submission to this public consultation process.
I write this submission as a former employee in the blood borne virus (BBV)/health sector, and as someone who supports the rights of people living with HIV, hepatitis C and hepatitis B.
I wish to express my serious concerns with any proposal for the mandatory testing of people whose bodily fluids come into contact with emergency services workers, including police.
These concerns are based on a number of factors, including:
The Options Paper places undue emphasis on the number of incidents of exposure to bodily fluids, not the number of transmissions
The table on page 8 outlines the total number of incidents of exposure to bodily fluids per year, including for NSW Police, Corrective Services and Health. These numbers are obviously quite high – especially in relation to NSW Health – however, they are not further categorised by the number of incidents in which the risk of BBV transmission is high, and therefore is inflated by a large proportion of incidents in which the risk of transmission is low or negligible.
Perhaps more importantly, while the paper includes the number of incidents of exposure to bodily fluids, it does not include any information on the number of actual transmissions of HIV, hepatitis C or hepatitis B in these contexts, presumably because these figures are also low or negligible.
For example, I understand that despite the high number of exposures within NSW Health, there have been no confirmed cases of HIV transmission for a health care worker following occupational exposure in NSW since 1994, and nationally since 2002.
I do not wish to underestimate the anxiety that may be experienced by an emergency services worker following an incident of exposure to bodily fluids. However, a focus on the number of incidents of exposure to bodily fluids, while ignoring the very low number of transmissions of BBVs, is likely to exacerbate rather than alleviate such anxiety.
The ‘window period’ means that mandatory testing for BBVs cannot offer the level of comfort that its advocates claim
The push for new laws in this area, introducing mandatory testing for BBVs, by organisations including the Police Association, appears to be motivated by a desire to provide comfort to emergency services personnel who are exposed to bodily fluids in the course of their work.
However, the respective window periods for detection of HIV, hepatitis C and hepatitis B mean that mandatory testing of the ‘source’ person of these fluids cannot offer genuine comfort for these employees. This fact is conceded in the Options Paper itself, on page 13: ‘Because of the window period, it can never be known for certain at the time of testing whether the source person is infectious.’
It is possible to imagine that the results of mandatory testing in these circumstances will instead lead to negative outcomes for the emergency services personnel themselves.
For example, an employee may feel relieved by a negative test of the ‘source’ person, and then, perhaps not fully understanding window periods or simply acting on ‘false confidence’, fail to take appropriate precautions to prevent onwards transmission to their partner, family or others.
On the other hand, a positive test of the ‘source’ person, for one or more BBVs, may lead to heightened anxiety for the emergency services employee, for several months, despite the fact the overall risk of transmission from the particular incident remains low.
Again, this scenario is contemplated in the Options Paper itself, on page 35: ‘even where the source person tests positive, there are varying degrees of risk that the disease will transmit to the emergency services worker. A further consideration is that a positive test result from a source person could have the opposite effect than intended by adding to a worker’s stress, rather than ameliorating it.’
In short, mandatory BBV testing cannot provide what its advocates want. Thus, option 2 – which calls for ‘changes to agency policy to allow the source person to be assessed, counselled and asked to consent to a sample being taken for testing by a health care professional’ – should not be supported.
A better approach would be to focus on providing appropriate health services to emergency services workers
In my view, it would be more effective to ensure that the health services offered to these employees are best practice.
This is contemplated in option 1: ‘improvements to agency policy and practice to ensure emergency services personnel are promptly assessed, counselled and managed by a health care professional with access to specialist advice immediately following an exposure to potentially infectious body fluids.’
This should be supplemented by increased education of emergency services personnel on the routes of BBV transmission, including how to minimise risks of work-related transmission and how to respond to exposure to bodily fluids.
There should also be ongoing programs to ensure all emergency services employees are vaccinated for hepatitis B, that where relevant they have prompt access to Post-Exposure Prophylaxis (PEP) for HIV and immunoglobulin for hepatitis B, and that highly-effective hepatitis C treatments remain available for all Australians who require it.
Mandatory testing undermines Australia’s successful BBV response which is based on consent
Australia has embraced a world-leading response to multiple blood borne viruses, including HIV and more recently hepatitis C.
In both cases, it is based on principles of informed consent and voluntary testing, engagement with affected communities, provision of harm reduction initiatives and the roll-out of treatment across the community.
The introduction of mandatory testing undermines this approach. Indeed, international bodies such as UNAIDS and the World Health Organisation (WHO) oppose mandatory testing because it compromises public health initiatives and efforts to reduce HIV and other BBV transmission.
For these reasons I am strongly opposed to option 3, which is described as ‘a consent-based scheme, with an option for a court ordered mandatory disease testing’.
On page 20, the Options Paper even claims that ‘The advantages of the consent process still apply, and informed consent is the basis for seeking testing. It is anticipated that a sample would be obtained in most cases, as most people would agree to be tested’.
In my opinion, it is highly misleading to state that such a scheme has anything to do with consent. It would more accurately be described as a duress-based scheme, especially because, as outlined on page 19, if the person does not provide ‘consent’ the emergency services agency may then apply to a court for a mandatory disease testing order and:
‘Where the source person does not complywith the court order, the relevant agency may apply to the court for a custody order with warrant. Police may apprehend and detain the source person for the purpose of taking the sample’ (emphasis in original).
This threat negates any consent that may be provided by anyone under this model.
The involvement of police in health-related risk assessments cannot be supported
Option 4 – which is described as ‘a scheme that would apply where an offence has been committed, with mandatory disease testing ordered by a senior police officer’ – has all of the disadvantages of option 3 (above), as well as raising other serious concerns.
The first and most obvious is that police officers are not appropriately qualified to undertake health-related risk assessments. This is again conceded on page 26, which notes: ‘A risk assessment conducted by a senior police officer (or senior correctional officer) offers practical advantages. However, they do not possess the medical expertise offered by health care professionals.’
However, perhaps an even larger problem is created by the criteria that would allow officers to order a test, including the following factor (on page 23):
‘The incident involves a suspected offence or has occurred during the lawful apprehension and detention of a person. For example, the exposure may occur during an assault on the emergency services worker, or while a police officer is arresting a person.’
It should be remembered that a significant proportion of suspected offences are never proven, and that charges in relation to the incident may ultimately be dropped (often several months afterwards). There are also occasions when the lawfulness of the individual’s apprehension and detention are contested, again usually some time later.
However, even if charges are dropped and/or the detention is subsequently found to be unlawful, in the meantime the individual would have already been subjected to an invasive and involuntary medical procedure (or indeed been charged again for failing to provide a sample).
It is even possible to see how, in an incident involving exposure to bodily fluids, such a scheme could operate as an incentive for police to allege an offence has occurred in order to obtain a BBV test from the source person.
This option is therefore not just poor from a health but also a legal perspective.
Mandatory BBV testing creates significant privacy concerns
All of options 2, 3 and 4 generate significant concerns for the privacy of people who undergo BBV testing. This is because the test results are automatically disclosed to the affected emergency services worker.
While it is proposed that safeguards be introduced to ensure the test results are not further disclosed, it is easy to foresee circumstances in which positive results will be disclosed either inadvertently or deliberately during this process.
This is obviously of significant concern for people living HIV, hepatitis C or hepatitis B, who have a right to control their health information, including choosing when, and to whom, they disclose their status.
These concerns are especially acute for people who may be diagnosed as a result of a mandatory BBV test in these circumstances. They will immediately and involuntarily have their status disclosed outside the health context to an emergency services or law enforcement employee, who is most likely a stranger to them and in whom they cannot necessarily place trust not to disclose to others.
This could be an incredibly disempowering experience for the individual concerned and, if health workers are involved in this process (for example, performing the test), could alienate them from the very services they should be accessing for support and (if they so choose) treatment.
It is revealing that the Options Paper discusses, at-length, multiple options in an effort to alleviate the concerns of emergency services workers who are exposed to bodily fluids, despite the fact it is highly unlikely they will ultimately contract a BBV, but spends little to no time discussing the consequences of a positive test result for the ‘source’ person, which is actually the more likely scenario.
This further illustrates that the proposals for mandatory BBV testing are not health- or evidence-based.
As outlined above, I have serious concerns about the proposals outlined in the Options Paper, and especially options 2, 3 and 4.
The ‘window periods’ for HIV, hepatitis C and hepatitis B mean there is limited public health benefit from introducing mandatory BBV testing. On the other hand, there are significant risks, including:
- Undermining principles of informed consent (and therefore compromising Australia’s world-leading BBV responses)
- Inappropriately involving police in health-related risk assessments and medical procedures, and
- Creating serious privacy concerns, especially for people diagnosed as a result of mandatory testing.
The preferred approach would be to ensure that emergency services personnel have access to appropriate information and health services, as outlined in option 1 (‘improvements to agency policy and practice to ensure emergency services personnel are promptly assessed, counselled and managed by a health care professional with access to specialist advice immediately following an exposure to potentially infectious body fluids’).
Therefore, while option 1 can be supported, options 2, 3 and 4 should all be rejected.
Please do not hesitate to contact me, at the details provided, should you require further information.