The HIV healthcare and treatments landscape has changed. Modern medications are safer, easier to take, and much more effective at suppressing the virus. Treating HIV immediately reduces the amount of HIV in body reservoirs, reduces the amount of chronic inflammation that HIV causes, and also prevents the onset of other serious chronic diseases. Access to HIV medications is more important than ever and must remain convenient, affordable with a minimum of prescription barriers.
My Health Record (MyHR)
In 2017 and 2018, Positive Life advocated strongly on behalf of all people living with HIV in NSW. At the time Positive Life advised people living with HIV who were sex workers; currently or have used drugs and alcohol (licit and illict); have less than two diagnoses and see only one or two doctors; live with a criminal history or are involved with the criminal justice system; are sexually active and non-monogamous, polyamorous or single; receive a sexually transmitted infection (STI) diagnosis and treatment every six to twelve months and are not taking reasonable precautions to opt out of the MyHR due to potential risk of criminalisation.
Positive Life and the Sex Worker Outreach Project (SWOP) released a Briefing Paper to inform and educate people living with HIV, sex workers and people who use and inject drugs about the advantages and disadvantages of the electronic medical record system – My Health Record (MyHR). The Paper was also developed to inform government, non-government and the Australian Digital Health Agency about issues of concern for these populations.
In 2017, Positive Life wrote a submission to NSW Department of Health offering feedback about the potential risks for people living with HIV associated with secondary use of the data. We advocate for five main principles to be strengthened and clarified with greater transparency in the secondary use of MyHR data framework. These were around the issues of Consent and Privacy, Secondary Uses, Confidentiality, Commerciality and Coercion, and Accountability and Oversight.
While the the MyHR Framework due to be reviewed in 2022, outlines that the secondary use of data will not be shared for commercial and non-health-related purposes such as Centrelink and law enforcement, including direct marketing to consumers, insurance assessments, and eligibility for welfare benefits, Positive Life remained cautious around any secondary use of this health data, even if the data has been de-identified.
People living with HIV and HIV Associated Neurocognitive Disorder (HAND)
In 2015, Positive Life conducted a community survey which asked people living with HIV about their concerns and experiences of HIV associated neuro-cognitive disorder (HAND). The results of this research identified five key areas for resource development to assist both people living with HIV to talk about HAND and for healthcare workers, service providers and significant others on how to respond meaningfully when addressing or raising concerns about the possibility of HAND with people living with HIV.
We acknowledge and thank the members of the ‘HAND Think Tank’ who contributed to the development of the resource, Multicultural HIV/AIDS Services (MHAHS) for their feedback and editing to make the resource accessible for those from culturally and linguistically diverse backgrounds (CALD).
We would also like to pay special acknowledgement to those people living with and affected by HIV who contributed their valuable time to complete the survey and those people living with a HAND diagnosis who participated in the final focus testing of this resource to better reflect the needs of people living with HIV and affected by HAND.
We also acknowledge the work in the development of this resource by: Prof Bruce Brew, Department of Neurology, St Vincent’s Hospital, Darlinghurst; Denise Cummins, Clinical Nurse Consultant, Sydney District Nursing, Community Health, Sydney Local Health District and David Crawford, Treatments Officer, Positive Life NSW.
HIV medication co-payment waiver
From October 2015, the NSW Government waivered the co-payment for people prescribed antiretroviral medications and other highly specialised drugs (HSD). Positive Life had advocated for this change in NSW for a number of years to increase access to HIV medications, reduce the cost burden, and support people living with HIV to remain motivated and adherent on our medication.
Immediate treatment of HIV
Positive Life has long advocated for the immediate start of HIV treatment as soon as possible after HIV diagnosis. The conclusive results of the START (Strategic Timing of Antiretroviral Treatment) study in 2015 showed that starting anti-HIV treatment immediately after diagnosis of HIV is clinically superior practice in protecting the health of people living with HIV.
The needs of people living with HIV accessing healthcare in NSW
In 2015 the NSW Ministry of Health asked Positive Life to explore the needs of people living with HIV as we access specialist and mainstream health services in NSW. After running a community survey between February and March 2015, the report has been produced and provides the views of people living with HIV.
From July 2015, people living with HIV in NSW have been able to get our medications dispensed at our local chemist rather than having to visit a hospital pharmacy. Positive Life has long advocated for the dispensing of HIV medications by community pharmacies (chemists) and we strongly supported this introduction of a more flexible HIV medication dispensing model aimed at providing people living with HIV with a range of access options in a convenient accessible manner.
From 2015, people living with HIV have been able to access HIV medication from community pharmacies. In preparation for the roll-out of the new policy, Positive Life surveyed people living with HIV in NSW about whether they would use a community pharmacy to collect their HIV medicines and if not, what their concerns might be.
Nearly two thirds of respondents (64.84%) to the community dispensing of HIV medication survey said they would consider collecting HIV medications from a chemist and a little less (61.92%) said that it was the easiest way to collect their HIV medication. However, the proportion of PLHIV choosing to use a chemist for HIV dispensing may be higher than the survey indicates. Employment data (SGCPS 2012) suggests that the proportions of people living with HIV in NSW who are employed, is higher than the percentage of survey respondents and it would be reasonable to speculate that more than 2/3 of people living with HIV in NSW may switch to a chemist for HIV dispensing services after 1 July 2015.
Approximately one third of the community pharmacy survey respondents had significant concerns about privacy and confidentiality when using chemists for HIV dispensing services. Some people living with HIV also had concerns about the expertise of chemist staff in relation to the provision of advice and support for HIV medication related side-effects and drug interactions. Addressing these issues via community education and chemist workforce training programs will be crucial to improving community understanding and confidence in the professional services provided by chemists and to increasing confidence in community HIV dispensing uptake by people living with HIV in NSW.
CEO of Positive Life NSW, Craig Cooper presentation on
HIV Medication Community Dispensing in NSW at AFAO members forum, May 2015
Electronic Health Records
From 2017 public hospital pathology reports are shared with My Health Record and rolled out through the NSW Health state-wide clinical information system HealtheNet Clinical Portal.
People living with HIV who have a My Health Record have the right to request that information from a particular hospital test is not sent to your My Health record and NSW Health is obliged to follow this request. You can also set access codes to restrict who sees your record.
Since 2017, information regarding your HIV status has been available to all NSW Health clinical staff who are providing care, treatment or counselling to you even if the care does not relate directly to your HIV status. This includes all NSW Health medical staff at any NSW public hospital or health facility, your GP, and private health services.
As with all patient health information, there remain strict controls to safeguard our privacy such as the Health Records and Information Privacy Act 2002 and the Public Health Act 2010. NSW Health staff can only view, access or use your health information when it is directly relevant to your treatment and care, on a ‘need to know’ basis. Serious penalties apply to staff who inappropriately access your information, including disciplinary action and potential criminal charges.
The Enhanced Medication Access (EMA) Scheme was superseded in 2015 with the move to community pharmacy dispensing of HIV medications. It was run out of The Albion Centre pharmacy and enabled people living with HIV who are stable on treatment to have their medications posted to their home or a nominated community pharmacy.
The use of cannabis for medical purposes
In 2015, Advocacy and Policy Officer Lance Feeney spoke to the Inquiry into the Regulator of Medicinal Cannabis Bill 2014 on behalf of PLHIV who use cannabis for therapeutic purposes and symptom relief. He called for the decriminalisation of small quantities of cannabis cultivation and possession for medicinal use and the need for research into the use of medicinal cannabis by PLHIV on behalf of the National Association of People With HIV Australia (NAPWHA) and Positive Life NSW.