You talk we die: Stigma as a barrier for People Who Inject Drugs accessing HIV testing and treatment

Overcoming Stigma: A Persistent Challenge for People Who Inject Drugs (PWID) and Health Services

Stigma has been an area of research and investigation for over half a century [9], yet it continues to act as a significant barrier to people who inject drugs (PWID) engaging with health services such as HIV testing and treatment [5][20][21][12]. Stigma can emanate structurally from within organisational policies and processes, from individual service providers [18], from within stigmatised communities as well as from ourselves, as internalised stigma. PWID experience additional barriers to services and stigma that come with being criminalised by the use of illicit substances.

“Stigma refers to a socially constructed process of labelling, stereotyping, and discriminating against people who are seen as different, deviant, or abnormal” [16]Scrambler, G

Ongoing experience of stigma has a negative impact on the health and wellbeing of PWID. To engage more effectively with PWID, it is important health services and service providers understand stigma, criminalisation and its impact on people presenting at their services. This is particularly important in Australia, where the implementation of wide-scale harm reduction services such as needle and syringe programs (NSP) has kept HIV prevalence among PWID below 2%. This is a great outcome for PWID and the wider community, but also means PWID who are HIV positive may find it difficult to find similar experience among the PWID community or health providers who can navigate the complexity of their needs. In particular, it can lead to a reluctance to engage with health services that provide essential care, such as Opioid Dependence Treatment (ODT), and HIV testing and treatment.

So what are some ways that PWID can have their experiences of stigma reduced?

Organisations can move forward in reducing stigma by placing services for PWID in less “large scale, institutionalised” settings [1], employing peers within all areas of services including leadership roles and policy development, and providing stigma training for client-facing staff. These measures can provide greater and more satisfying engagement with PWID, with an uptake of services being offered, including the testing and treatment of HIV.

Biancarelli has suggested that moving treatment away from “Hospital Style” environments may help in more effective service provision for PWID. [1] An example of this would be The Kirketon Road Centre (KRC), based in Sydney’s King’s Cross. KRC is located within 500 metres of Kings Cross train station. It provides primary care to people who traditionally are reluctant to access “mainstream health care services”. A significant proportion of their clientele are PWID and/or street based sex workers. Another aspect that Biancarelli highlights the integration of care within the healthcare environment. [1] Again, KRC acts as an example to this. KRC provides ready access to ODT, with a marked focus on HIV and hepatitis C testing and treatment, in tandem to more “traditional” primary care services.

Another area that has been highlighted as reducing stigma and increasing access to health care services among PWID is the employment of peers within the workforce. A peer can generally be described as someone who has lived or living experience with a situation, is accepted as a peer by that community, and is in a position to disclose their personal experience for the benefit of the people with whom they work. Treloar, Cama, Lancaster, et. al believe that providing peers with a central position in provision of care should be considered as best practice. [19] Chang, Shelly, Busz et. al found that peer involvement of PWID reduced HIV incidence and prevalence; increased service access, acceptability and quality; changed risk behaviours; and reduced stigma and discrimination.

With a reduction in stigma, people are more likely to develop trust with organisations and the people who provide services. [4] Fleming, Valleriani, Ng et. al undertook a feasibility study on a hypothetical HIV vaccination with PWID. They found that uptake would be low amongst PWID, with a mistrust of organisations and health care service providers being some of their main objections. There was also an underlying feeling that governments and for-profit organisations didn’t care about PWID. Whilst some of these feelings may have aspects of truth in them, it would be interesting to see if the position changed if any vaccine had a level of “Peer Approval” attached to it, and what that approval process might look like. [8]

Peer workers can facilitate access to HIV testing, referral to care, uptake of, and adherence to antiretroviral treatment, as well as sustaining engagement in care for PWID [9]. The engagement of peers has also been identified as one of the key driving forces for uptake of HIV testing and treatment for Aboriginal and Torres Strait Islander people [11]. A peer within the workspace can potentially bring a level of “increased credibility” that other workers may not be able to achieve. A person seeking support within a health care setting may find that having someone who has “been through what they are going through”, who has insight into particular aspects of their experience others may not know about, and who can guide them through the experience can lead to superior treatment outcomes.

Training for peers and other service providers around stigma is also vital for effective care and treatment. Patil, Mummery, et.al showed that participation in stigma training can positively influence the development of professional attitudes and practices. [14] One particular area that has proven to be effective in delivering stigma training has been online resources [3]. The authors found that a 40-minute online stigma reduction training module delivered to health care workers reduced negative attitudes and concerns around working with PWID. The authors go on to argue that the peer-led development of the intervention may have increased the credibility of the information presented and made the concerns more real to participants. Some potential concerns raised were that the training module was voluntary, and therefore the participants may have been more amendable to change their attitudes.

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When we reflect on our provision of services to Aboriginal and/or Torres Strait Islander people, we can only benefit from a more tailored and culturally sensitive approach to service delivery. Although there have been reductions in new HIV notifications among Indigenous people in recent years (and notifications for both 2021 and 2022 need to be considered in the context of interruptions to health care due to COVID-19), there is a significantly greater proportion of HIV notifications attributed to injecting drug use among Aboriginal and Torres Strait Islander peoples compared with non‑Indigenous people. It is an area that can and will benefit from increased support through training [7].

A further aspect that stigma training has highlighted is the breadth over which stigma can occur. Pachankis, Hatzenbuehker, Wang, et. al identify ninety-three sperate domains over which people can experience stigma. [13] Treloar, Cama, Lancaster, K., et al. argue that a “default setting” within health care service provision would be to assume that everyone presenting to a service experiences stigma in some way, and that adopting “universal precautions”, would ameliorate perpetuation of stigma. The benefits of such an approach are that it would not require addressing each individualised “Silo of Stigma”, but recognise that people presenting to services may be fearful of exclusion or poor treatment on the basis of one or more attributes, conditions, practices or identities. It also recognises that multiple settings and situations might give rise to stigma and discrimination (whether intended or not), and that this fundamentally undermines provision of effective health care. Within the area of harm reduction for injecting drug use, anyone who has worked in the field will already appreciate that people seeking care will rarely present with only one “type” of stigma. A more holistic approach to addressing stigma is required. [19]

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To sum up, the presence of HIV within our community of PWID continues. Access to HIV testing and treatment for PWID is stymied through stigmatising attitudes, beliefs, practices, and structures. To reduce the level of stigma that PWID experience, it is recommended that service provision be moved away from dehumanising and institutionalising settings, such as mainstream hospitals, and be located in more “community friendly” or even peer-led environments. Service provision will also be enhanced by the meaningful inclusion of peers, who have lived and living experience and can provide support to PWID accessing HIV testing and treatment. There is also an ongoing need for stigma training, again with significant and meaningful input and collaboration with peers. This is paramount when it comes to working with our Aboriginal and Torres Strait Islander brothers and sisters. We need to recognise that when a person presents for services such as HIV testing and treatment, they will most likely present with stigma from a multitude of experiences. Although we may not be able to address each of these individually, it may be possible to adopt a “Universal Precautions” approach. By implementing these recommendations, people accessing HIV testing and treatment will experience greater positive health outcomes.