Magdalena Harris

Hepatitis C treatment access and uptake for people who inject drugs: a review mapping the role of social factors.

BackgroundEvidence documents successful hepatitis C virus (HCV) treatment outcomes for people who inject drugs (PWID) and interest in HCV treatment among this population. Maximising HCV treatment for PWID can be an effective HCV preventative measure. Yet HCV treatment among PWID remains suboptimal. This review seeks to map social factors mediating HCV treatment access.MethodWe undertook a review of the social science and public health literature pertaining to HCV treatment for PWID, with a focus on barriers to treatment access, uptake and completion. Medline and Scopus databases were searched, supplemented by manual and grey literature searches. A two step search was taken, with the first step pertaining to literature on HCV treatment for PWID and the second focusing on social structural factors. In total, 596 references were screened, with 165 articles and reports selected to inform the review.ResultsClinical and individual level barriers to HCV treatment among PWID are well evidenced. These include patient and provider concerns regarding co-morbidities, adherence, and side effect management. Social factors affecting treatment access are less well evidenced. In attempting to map these, key barriers fall into the following domains: social stigma, housing, criminalisation, health care systems, and gender. Key facilitating factors to treatment access include: combination intervention approaches encompassing social as well as biomedical interventions, low threshold access to opiate substitution therapy, and integrated delivery of multidisciplinary care.ConclusionCombination intervention approaches need to encompass social interventions in relation to housing, stigma reduction and systemic changes in policy and health care delivery. Future research needs to better delineate social factors affecting treatment access.

Injecting, Infection, Illness: Abjection and Hepatitis C Stigma

While social research has documented the prevalence and ill effects of hepatitis C related stigma, there has been little analysis of the ways in which this stigma is constituted. This article addresses this gap in the literature by providing a phenomenologically informed account of the ways in which societal attitudes and regulations draw from and feed back into corporeal processes and experiences of embodiment in the creation of hepatitis C related stigma. The case is made that three components are central to hepatitis C stigma: associations with illicit drug injecting, infectiousness and societal aversion to chronic illness. The article draws upon qualitative interviews with 40 people living with chronic hepatitis C in New Zealand and Australia, as well as the researcher’s embodied experience of living with the virus. The works of Julia Kristeva and Mary Douglas are utilized to provide an analysis that moves beyond acknowledgement of societal reinforcers of stigma, such as prohibitory drug laws, to address underlying notions of boundary crossing in the production of stigma and exclusionary practices.

'I can't do this, it's too much': building social inclusion in cancer diagnosis and treatment experiences of Aboriginal people, their carers and health workers

ObjectivesSocial inclusion theory has been used to understand how people at the margins of society engage with service provision. The aim of this paper was to explore the cancer care experiences of Aboriginal people in NSW using a social inclusion lens.MethodsQualitative interviews were conducted with 22 Aboriginal people with cancer, 18 carers of Aboriginal people and 16 health care workers.ResultsParticipants’ narratives described experiences that could be considered to be situational factors in social inclusion such as difficulties in managing the practical and logistic aspects of accessing cancer care. Three factors were identified as processes of social inclusion that tied these experiences together including socio-economic security, trust (or mistrust arising from historic and current experience of discrimination), and difficulties in knowing the system of cancer treatment.ConclusionsThese three factors may act as barriers to the social inclusion of Aboriginal people in cancer treatment. This challenges the cancer care system to work to acknowledge these forces and create practical and symbolic responses, in partnership with Aboriginal people, communities and health organisations.

Human rights and access to hepatitis C treatment for people who inject drugs

BACKGROUND People who inject drugs (PWID) achieve adherence to and outcomes from hepatitis C virus (HCV) treatment comparable to other patients. Nonetheless, this population has been excluded from treatment by regulation or practice. Approval of safer and more effective oral HCV medicines should offer greater treatment options for PWID, although high medicine prices have led to continued treatment rationing and exclusion in developed countries. In middle-income countries (MICS), treatment is largely unavailable and unaffordable for most PWID. METHODS Human rights analysis, with its emphasis on the universal and interconnected nature of the economic, social and political spheres, offers a useful framework for HCV treatment reform. Using peer-reviewed and grey literature, as well as community case reports, we discuss barriers to treatment, correlate these barriers to rights violations, and highlight examples of community advocacy to increase treatment for PWID. RESULTS Structural drivers of lack of treatment access for PWID include stigma in health settings; drug use status as a criterion for treatment exclusion; requirements for fees or registration by name as a drug user prior to treatment initiation; and incarceration/detention in prisons and rehabilitation centers where treatment is unavailable. High medicine prices force further exclusion of PWID, with cost containment masked as concern about treatment adherence. These barriers correlate to multiple rights violations, including of the rights to privacy; non-discrimination; health; freedom of information; fair trial; and freedom from cruel, inhuman and degrading treatment. CONCLUSIONS Needed reforms include decriminalization of drug use, possession of drugs and drug injecting equipment; removal of exclusionary or discriminatory treatment protocols; approaches to strengthen links between health providers and increase participation of PWID in treatment design and implementation; and measures to increase transparency in government/pharmaceutical company negotiations and reduce treatment price.

Health literacy in relation to cancer: addressing the silence about and absence of cancer discussion among Aboriginal people, communities and health services

Cancer outcomes for Aboriginal Australians are poorer when compared with cancer outcomes for non-Aboriginal Australians despite overall improvements in cancer outcomes. One concept used to examine inequities in health outcomes between groups is health literacy. Recent research and advocacy have pointed to the importance of increasing health literacy as it relates to cancer among Aboriginal people. This study examined individual, social and cultural aspects of health literacy relevant to cancer among Aboriginal patients, carers and their health workers in New South Wales. Qualitative interviews were conducted with 22 Aboriginal people who had been diagnosed with cancer, 18 people who were carers of Aboriginal people with cancer and 16 healthcare workers (eight Aboriginal and eight non-Aboriginal health workers). Awareness, knowledge and experience of cancer were largely absent from peoples lives and experiences until they were diagnosed, illustrating the need for cancer awareness raising among Aboriginal people, communities and services. Some beliefs about cancer (particularly equating cancer to death) differed from mainstream Western biomedical views of the body and cancer and this served to silence discussion on cancer. As such, these beliefs can be used to inform communication and help illuminate how beliefs can shape responses to cancer. Participants proposed some practical strategies that could work to fill absences in knowledge and build on beliefs about cancer. These results were characterised by a silence about cancer, an absence of discussions of cancer and an acknowledgement of an already full health agenda for Aboriginal communities. To promote health literacy in relation to cancer would require a multi-layered programme of work involving grass-roots community education, workers and Board members of Aboriginal community-controlled health organisations and speciality cancer services, with a particular focus on programmes to bridge community-based primary care and tertiary level cancer services.

One size fits all? The discursive framing of cultural difference in health professional accounts of providing cancer care to Aboriginal people

Objectives. Cancer is the second biggest killer of Aboriginal Australians. For some cancers, the mortality rate is more than three times higher in Aboriginal people than for non-Aboriginal people. The Aboriginal Patterns of Cancer Care Study explored barriers to and facilitators of cancer diagnosis and treatment among Aboriginal and Torres Strait Islander people in New South Wales. Design. Our team – which includes both Aboriginal and non-Aboriginal researchers – conducted in-depth interviews between 2009 and 2010 with Aboriginal people with cancer, their carers and health professionals who care for them. In this paper, we identify recurrent patterns of ‘discursive framing’ in the 16 interviews with health care professionals. We are particularly interested in how these frames assisted participants in constructing a professional position on what ‘cultural difference’ means for the design and delivery of cancer care services to Aboriginal people. Results. Despite geographical, organisational, disciplinary and cultural diversity, these interview participants consistently drew upon six discursive frames, which we have interpreted as either eliding a discussion of difference (‘everyone is the same’ and ‘everyone is different’) or facilitating that discussion (‘different priorities,’ ‘different practices’ and ‘making difference safe’). An additional strategy appeared to actively resist either of these positions but then tended to ultimately prioritise the eliding frames. Conclusions. While none of our participants were dismissive of the idea that cultural identity might matter to Aboriginal people, their reliance upon familiar narratives about what that means for cancer care services has the potential to both symbolically and practically exclude the voices of a group of people who may already feel disenfranchised from the mainstream health care system. Critically unpacking the ‘taken for granted’ assumptions behind how health care professionals make sense of cultural difference can enrich our understanding of and response to the care needs of indigenous people affected by cancer.

The promise of treatment as prevention for hepatitis C: Meeting the needs of people who inject drugs?

Treatment as prevention (TasP) is a concept common to the HIV sector. In this commentary we draw on the literature addressing HIV and HCV TasP, alongside qualitative HCV research, to critically appraise the promise of TasP for HCV and assess the needs of PWID in the future of HCV care. With the advent of highly effective direct-acting antiviral HCV treatments, TasP is now under consideration for HCV. A growing body of literature documents numerous social structural barriers to HCV treatment access and uptake for PWID, among whom HCV is highly prevalent. Yet these barriers - and suggestions for surmounting them - are rarely included in emergent literature on HCV TasP. Although HCV TasP has important advocacy potential for increasing treatment access among PWID, critical reflection on its implications are warranted. We outline potential limitations of TasP for HCV and the conditions under which it might be optimised. We argue that HCV treatment as a prevention strategy can only be realisable in a context of enhanced harm reduction access, meaningful community engagement, and enabling environment interventions informed by the needs and perspectives of PWID.

Finding the undiagnosed: a qualitative exploration of hepatitis C diagnosis delay in the United Kingdom.

Hepatitis C virus (HCV)‐related morbidity and mortality will continue to rise unless HCV testing and treatment uptake increases. In the European region, an estimated nine million people live with HCV, yet only 10–40% are diagnosed. Over 100 000 undiagnosed people live with HCV in the United Kingdom (UK). For some, a late diagnosis can come too late. The aim of this qualitative study was to explore the context of a diagnosis delay among people living with HCV in the UK. Participants were recruited through two London Hospitals and The Hepatitis C Trust. Eligible participants identified a recent (<3 years) HCV diagnosis and a historical HCV transmission risk period (>15 years). The primary method of data collection was in‐depth interviews (12 participants) and focus groups (16 participants). Analysis was informed by grounded theory principles. The sample, 17 men and 11 women, reported an average gap of 28 years between their HCV‐risk period and first HCV test. Forty per cent had cirrhosis at HCV diagnosis. Diagnosis delay was attributed to limited HCV relevance, felt wellness, stigma, compartmentalization of former injecting practices, unexplained symptoms and general practitioner inaction. Diagnosis context involved a change of health care providers or a chance medical encounter. Trust in providers was impacted by a delayed diagnosis, with implications for future engagement in care. These data indicate that risk awareness does not necessarily result in action. A multipronged approach is needed to increase HCV case finding in the UK, particularly among ‘hidden populations’ such as former injectors and transfusion recipients.

“It's Russian roulette”: Adulteration, adverse effects and drug use transitions during the 2010/2011 United Kingdom heroin shortage

BACKGROUND Between late 2010 and mid 2011 there was a significant heroin shortage in the United Kingdom (UK), resulting in a rapid drop in street heroin purity and increase in price. The most well documented event of this kind is the 2000-2001 Australian heroin shortage, with little published research addressing the UK context. In this paper we draw on qualitative data to explore the impact of, and responses to, the 2010/2011 shortage among London-based heroin users. METHODS Data collection comprised longitudinal life history and narrative interviews with 37 PWID in 2010-2011. The average age of participants was 40, with a 20-year average duration of injecting. Heroin was the drug of choice for the majority of participants (25), with 12 preferring to inject a crack-cocaine and heroin mix. Recruitment took place through London drug and alcohol services and peer networks. RESULTS The majority of participants continued to source and inject heroin despite reported decline in purity and increased adulteration. Transitions to poly-drug use during the heroin shortage were also common, increasing vulnerability to overdose and other drug related harms. Participants enacted indigenous harm reduction strategies in attempting to manage changes in drug purity and availability, with variable success. CONCLUSION Epidemiological data gathered during periods of heroin shortage is often drawn on to emphasise the health benefits of reductions in supply. Our findings highlight the importance of understanding the ways in which heroin shortages may increase, as well as reduce, harm. There is a need for enhanced service provision during periods of drug shortage as well as caution in regard to the posited benefits of supply-side drug law enforcement.

Hepatitis C avoidance in injection drug users: A typology of possible protective practices.

Introduction Hepatitis C virus (HCV) represents a serious public health concern. People who inject drugs (PWID) are at particular risk and nearly half (45%) of PWID in England may be infected. HCV prevention interventions have only had moderate impact on the prevalence of HCV in this population. Using qualitative methods, we sought to detail the protective practices potentially linked to HCV avoidance among PWID, and explore the motivations for these. Methods The study used a life history approach allowing participants to detail their lived experience both before and during the course of their injecting careers. Thirty-seven participants were recruited from drug services in London, and from referrals within local injecting networks. A baseline and follow-up in-depth qualitative interview was carried out with each participant, and for half, a third interview was also undertaken. All underwent testing for HCV antibody. Analyses focused on developing a descriptive typology of protective practices potentially linked to HCV avoidance. Results Practices were deemed to be protective against HCV if they could be expected a priori to reduce the number of overall injections and/or the number of injections using shared injecting equipment. Participants reported engaging in various protective practices which fell into three categories identified through thematic analysis: principles about injecting, preparedness, and flexibility. Conclusions All participants engaged in protective practices irrespective of serostatus. It is important to consider the relative importance of different motivations framing protective practices in order to formulate harm reduction interventions which appeal to the situated concerns of PWID, especially given that these protective practices may also help protect against HIV and other blood borne infections.