The Sixth National HIV Strategy

6.3.7 People living with HIV with high support needs

Page last updated: July 2010

Some HIV-positive people may have high support needs that are ongoing, or occur over a short period. Situations that may lead to intensified support include:

  • a new HIV diagnosis13
  • a diagnosis of AIDS or serious HIV-related illness14
  • persistent failure of antiretroviral therapy to suppress HIV or development of resistance to treatment15, 16
  • the development of major side effects such as peripheral neuropathy and body shape changes17, 18
  • diagnosis of a second, major illness such as advanced hepatitis C infection or a bleeding disorder19, 20, 21, 22
  • alcohol and other drug dependency issues (particularly with reference to a mental health co-morbidity)23
  • HIV-related serious non-AIDS morbidities such as cardiovascular or renal disease or cancer24, 25
  • psychiatric, cognitive or intellectual disability that may or may not relate to HIV infection26
  • social determinant issues such as homelessness and poverty.27
People who have high support needs are at greatest risk of disease progression and also, possibly, of onward transmission. Some are also at risk of being lost in follow up. Specialised and better coordinated services are needed to respond to their needs. Health and HIV agencies need to work closely in a team-based approach with alcohol and other drugs services as well as mental health and housing services to provide case management with a team-based approach linked to primary healthcare services that meet welfare and rehabilitation needs.

Complex needs require a comprehensive response from a range of service providers. In many cases, the most appropriate sector to provide case management is the HIV sector. People with complex needs may lack basic survival skills, for example, or be particularly susceptible to social isolation and not inclined to access health promotion or other services.

The appropriate management of people with HIV-related cognitive illness remains a particular challenge. While people with cognitive illness have priority care and support needs, community agencies often cannot provide the intensive levels of care required or the specialised, supported accommodation that is often necessary.
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Priority actions in treatment, health and wellbeing

  • Improving models of care by adapting chronic disease models to the HIV context and by promoting of implementation of the recommendations of the Final Report of the project Models of Access and Clinical Service Delivery for HIV Positive People Living in Australia, including through the reorientation of some existing services.
  • As part of broader programs to reduce HIV related stigma and discrimination, integrating programs to build resilience and coping strategies for people living with HIV.
  • Continuing investigation of new laboratory technologies with benefits for individual patients and/or applications that improve broader population surveillance and data collection.
  • Ensuring health technology assessments that allow for the best utilisation of drugs to patient populations as well as diagnostic and screening tools for best practice in clinical management will be considered for their relevance to the Australian HIV response.
  • Defining the social and economic cost-burden of care and support on HIV-positive people.
  • Investigating the changing needs of a significant population of people living with HIV, on treatments, living longer and ageing with HIV.

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13 Ward K, 2009, ‘New HIV Diagnosers in NSW’, Australasian Society of HIV Medicine Conference, Perth.
14 British HIV, 2007, Association Standards for HIV Care, available at: <http://www.bhiva.org/cms1191535.asp>.
15 Wyl V. et.al. ‘Long-term trends of HIV type 1 drug resistance prevalence among antiretroviral experienced patiens in Switzerland: Swiss cohort study, HIV/AIDS’, Clinical Infections Diseases, 2009, April 1: 48(7): pp. 979–87, available at: <http://www.usz.ch/Seiten/default.aspx>.
16 Savage J, Models of Access and Clinical Services Delivery Report—HIV populations in Australia: Implications for access to services and delivery, May 2009.
17 Evans S, Clifford D, Chen H, Schifitto G, Yeh T-M, Wu K, Bosch R, McArthur J, Simpson D & Ellis R,‘HIV associated peripheral neuropathy in HAART era: results from ACTG longitudinal linked randomised trials’, Conference on Retroviruses and Opportunistic Infections 2009, abstract 462.
18 Wierzbicki AS, Purdon SD, Hardman TC, Kulsegaram R, & Peters B, ‘HIV lipodystrophy and its metabolic consequences: Implications for clinical practice’, Medical Research and Opinion, 2008 March; 609 24 (3): pp. 609–24.
19 Baker R, 2007, ‘Using data for better clinical outcomes’,14th ANZ Haemophilia Conference, Canberra.
20 Haemophilia Foundation Australia, 2007, ‘A Double whammy: Living with a bleeding disorder and Hepatitis C—National Hepatitis C Needs Assessment Report’, Haemophilia Foundation Australia.
21 Monteforte A d’A et al. ‘Risk of developing specific AIDS-defining illnesses in patients coinfected with HIV and hepatitis C virus with and without liver cirrhosis’, Clinical Infectious Diseases, vol. 49, pp. 612–622, 2009.
22 Piroth L, ‘Coinfection with hepatitis C virus and HIV: more than double trouble’, Clinical Infectious Diseases, vol. 49: pp. 623–625, 2009.
23 Pence BW, Miller WC, Whetten K, Eron JJ & Gaynes BN, Prevalence of DSMIV-Defined Mood, Anxiety, and Substance Use Disorders in an HIV Clinic in the Southeastern United States, Journal of Acquired Immune Deficiency Syndromes, 42(3): pp. 298–306, July 2006.
24 Deeks, S & Phillips A, ‘HIV Infection, Antiretroviral Treatment, Ageing, and Non-AIDS related Morbidity’, British Medical Journal, 2009; 338: a3172.
25 Grinspoom S & Carr A, ‘CVD risk and body fat abnormalities in HIV-infected adults’, New England Journal of Medicine, 2005, Jan 6; 352 (1): pp. 48–62.
26 Letendre SL, Ellis RJ, Everall I, Ances B, Bharti A & McCutchan A, ‘Neurological complications of HIV disease and their treatment’, Top HIV Medicine, April to May 2007, 15 (2): pp. 32–9.
27 Smith, A., Agius, P., Mitchell, A, Barrett, C & Pitts, M (2009) Secondary students and sexual health 2008: Results of the 4th national survey of Australian Secondary students. Australian Research Centre in Sex, Health and Society. Latrobe University. Melbourne. Victoria, accessed 7 August 2009