Sector news: It is now easier than ever to prescribe treatment for hepatitis C. See updated PBS General Statement f… https://t.co/IlEifTiDlH
Dr Elizabeth Crock
Dr Liz Crock is a Registered Nurse who first worked in HIV in the early 1990s as an HIV Clinical Nurse Specialist at Fairfield Infectious Diseases Hospital in Melbourne. She has worked with the Royal District Nursing Service HIV Team as Clinical Nurse Consultant in Melbourne for the last 14 years, and is the current Vice President of the Australian and New Zealand Association of Nurses in AIDS Care (ANZANAC). Liz has a longstanding interest in ethics in HIV nursing and has completed a PhD on this subject. In 2013, Liz was awarded the International Centre for Nursing Ethics Human Rights Award for her advocacy in developing specialist HIV community nursing roles and in working with the Victorian AIDS Council in developing and strengthening the Partnership Agreement between RDNS and Victorian AIDS Council that ensures an integrated model of community-based care and support for people living with HIV. She recently completed a Master of Public Health through the University of Melbourne.
I have worked in HIV nursing for over 20 years, initially at the Fairfield Infectious Disease Hospital in Melbourne, where I undertook post graduate studies in Infectious Diseases Nursing, and later in the community. I have worked as Clinical Nurse Consultant in HIV at the Royal District Nursing Service in Melbourne, Victoria for 15 years and am now the HIV Team Coordinator within the Homeless Person’s Program at RDNS. I have a long term interest in ethics, human rights and public health, especially in relation to HIV and nurses’ roles.
Professor Gracelyn Smallwood is Professor of Nursing at Central Queensland University and Adjunct Professor at the Division of Tropical Health and Medicine at James Cook University (JCU), Townsville, Queensland (QLD). She is also a Birrigubba, Kalkadoon and South-Sea Islander woman who participated in a panel on Thursday 17th November at the Symposium on Aboriginal and Torres Strait Islander peoples - 90/90/90 - but who are the 10/10/10?
After Dr James Ward re-presented data on the more than doubling of HIV diagnoses amongst indigenous people in Australia in 2015, he said 'we are a critical point in the epidemic' and clearly need to act urgently. The panel discussed proposals and strategies to respond to this dire situation, such as ways to get more people tested, diagnosed and into care. Here I try to capture some of what Professor Smallwood said, as without such insights from aboriginal people and without action on these at a much higher political level, the medical, scientific and health professions cannot solve this.
Professor Smallwood, with decades of nursing and midwifery experience in rural and remote communities as well as in the city, and over 50 years of advocacy for her people, gave a clear and compelling response. 'We need to implement the National Aboriginal Health Strategy, Bringing them Home report and all other reports that have been written and not followed through'. 'HIV will be the last nail in the coffin' she said, and she has said this before. 'Locals are key. We need blackfellas as chief investigators and aboriginal health workers are the key players, start empowering them, ask *them* to be keynote speakers . Get deadly health workers into clinics to undertake testing'. Hardly any money gets down to the local level. There's is a 200% markup on food (in remote areas), jobs have been phased out, it is no wonder people are using drugs'... 'Give me any disease', she said and 'I will give you the answer'.
2.30 pm session Wednesday 16th November
In her session entitled 'Holding space for those who hold doubts', Christy Newman presented her qualitative research referred to as the 'ARV uptake study'. Based on interviews with 27 people living with HIV around Australia who were not taking treatment, she explored their reasons for not starting nor taking it. She found they had varied and usually well-considered reasons for not using ART, including difficulty access treatment due to immigration status, housing issues, having a 'cautious doctor', concerns about long term side effects, for instance. One participant had experienced a range of unpleasant side effects and had elected to stop treatment at the time of the study.
I believe this type of research is critical and we need more of it. In my experience too, people who choose not to take or to delay treatment are often ridiculed and begin to feel alienated, even from their own communities, as Christy also found in this small study. She noted one person saying he felt 'invalidated' (by the HIV positive community) because he was not on treatment. But many are making a considered choice/decision, even if healthcare workers disagree with that decision; they may still require support, and should not be dismissed by services.
As Christy Newman noted in her presentation, 'taking a hard line on treatment can rupture shared points of connection' between health are workers and people living with HIV who are not on treatment. I look forward to hearing more about this work.