Systemic Advocacy:
Ways we seek to influence the distribution of political, social and economic outcomes.
Representation of our interests as citizens.
Lance Feeney
Over a twenty year period, Positive Life has built powerful coalitions and effective partnerships between community sector agencies, government, researchers and clinicians. These partnerships collect and harness evidence. They also work to create supportive environments, enabling people with HIV to enhance their own health and quality of life, and the quality of life of their partners and communities.
The newly created Systemic Advocacy project plans to build on these relationships with NSW Health, ACON, the Bobby Goldsmith Foundation, Area Health Services, mainstream services, the clinical and research sector, NAPWA, AFAO and people with HIV – to reinvigorate and enhance our advocacy and achieve the following objectives:
- Work with the HIV sector and relevant mainstream organisations and people with HIV, to identify barriers and improve access to health and support services across NSW by: annually consulting with all relevant stakeholders to identify and act upon two priority areas/issues.
- Develop and implement joint approaches that improve and ensure ongoing access to services for people with HIV: by working with key HIV and other stakeholders to identify and cooperatively progress access objectives and strategies.
- Increase recognition and understanding of the diverse needs of people with HIV: remaining informed about the current and emerging issues affecting people with HIV across metropolitan and regional NSW.
- Contribute to measures to identify and address the impact of stigma and discrimination on the quality of life and opportunities of people with HIV by: implementing inclusive consultation strategies that seek input from the full range of people living with HIV throughout NSW.
- Establishing effective processes to measure and communicate the impact of our systemic advocacy work, to people with HIV, partners, stakeholders and relevant decision makers.
In the 2008-2009 financial years, we will include the following priority issues in our systemic advocacy work:
Oral health and access to Dental Services
Whether using publicly funded dental clinics or private dentists, access to good and affordable dental care is vital to the health and wellbeing of people with HIV. The EPC Medicare Dental Scheme, introduced in November 2007, was a welcome treatment initiative and provided improved access and treatment options. The Federal Labour Government has announced it will replace this scheme with a Commonwealth Dental Health Program. We will be working with NSW Health, Sydney Dental Hospital, St.Vincent’s Dental Department and relevant Area Health Services, to advocate for improved and speedier access to preventive and restorative dental treatment for people with HIV in both metropolitan and regional NSW.
HIV and the media
The availability of people with HIV who are willing to provide a personal perspective about living with HIV in public forums and through mainstream media is currently limited. We will recruit, train and support people with HIV to develop their media skills and to provide a diverse range of personal perspectives about the issues that impact on our health and wellbeing.
We will also resource the media with up to date information about HIV issues in Australia, including: epidemiology, the background to stigma, sensitivities of disclosure, discrimination, emerging issues in prevention, the impact of long term HIV treatments and the issues facing people living long term with HIV.
Insurance, discrimination and HIV
Access to insurance for people with HIV varies. Attitudes to HIV as a pre-existing condition, and the long term prognosis impact on how insurance providers view the risk of insuring people with HIV. This impacts across the spectrum of insurance products including; travel, health and life insurance in particular. People with HIV - after less favourable treatment, or from fear of less favourable treatment – may decide not to take out insurance or not to disclose. This may affect their ability to plan for a secure financial future and contribute to financial hardship in their later life.
We will collect and publish information on available insurance cover in Australia and assist people with HIV to have a better understanding of their rights and obligations when applying for insurance. We will also work with the Australian insurance industry to bring them up to date with the improving prognosis and life expectancy for people with HIV.
Employment and HIV
Employment continues to present challenges for people with HIV. Dealing with side effects, intermittent illness and time away from work for doctor’s appointments and pharmacy visits, requires flexibility on the part of employers. The management of disclosure, the impact of breaches of privacy, and potential discrimination within the workplace, can make getting and keeping a job more difficult.
We will assist people with HIV to continue to develop skills around returning to full-time or part-time work, study or volunteering. We will also assist working people with HIV to understand their employment rights and responsibilities, manage career change, financial planning, disclosure and privacy issues, and to advocate for the flexibility to maintain health and life balance while also working. We will also use this work to consider ways to work with employers and unions regarding these issues.
Facial Lipoatrophy and access to affordable treatment
Facial Lipo can impact negatively on mental health, socialisation and quality of life. A range of cosmetic procedures have been successfully used to rectify facial Lipo. These procedures however are expensive and some need to be regularly repeated.
The recent NSW Sculptra Special Access Scheme, provided a course of free treatment for people on low incomes with facial Lipo and was a highly successful collaboration of Government, community based organisations and Aventis, makers of the Sculptra product. Participants overwhelmingly reported a positive experience.
Positive Life will now review the evidence and make recommendations about what measures could assist people with HIV experiencing facial Lipo in the medium to long term.
Access to Mainstream services
A key role for this project is to identify and act on barriers to services for people with HIV. As HIV treatments and experience changes, and as people with HIV age, we will need to engage more with mainstream health and community care and support services. In doing this, organisations like Positive Life need to be able to raise awareness about the needs of people with HIV and be ready to provide training and awareness to support services providers and ensure access for people with HIV. We will continue to work with health services to ensure that wherever we need to access health services, the care is high quality, clinicians understand any specific HIV interactions and needs, and that privacy and disclosure (and their impacts) are understood and respected.
Relationship recognition and the impacts for people with HIV on pensions
The financial impacts of the proposed federal relationship recognition legislation, in particular, how a working partner’s income will affect the income and health concession eligibility of the partner on an age or Disability Support Pension will be important issues for many people with HIV. We will advocate for ways which ensure that people affected by the legislation are properly informed, able to plan to ease the impact and that measures to limit hardship are put in place.
Improved access to dispensing of HIV medication
Taking HIV treatment as directed is the most important factor in the success of anti-HIV treatment. Easy access to pharmacy dispensing services is crucial to maintaining treatment success. At present, HIV medications are only available in NSW through hospital pharmacies and specific services like the Albion Street Centre Pharmacy. These services generally operate Monday to Friday during business hours and require prior planning, employer flexibility, time away from work and in some cases, long travel times during work hours, to pick up medications.
Positive Life will work with hospital and other pharmacy services and NSW Health to improve access for people with HIV.
The UN Convention on the Rights of Persons with Disabilities
Positive Life gave evidence to the Joint Standing Committee on Treaties in response to the proposed ratification of the UN Convention on the Rights of Persons with Disabilities.
We support the Convention and the ratification by Australia. We however question the health requirement related to immigration and called for a more balanced consideration of both the costs and benefits to Australia of immigrants and their families with HIV.
We highlighted the continuing exemption given to insurance providers in the Disability Discrimination Act and highlighted the lack of consideration given to people with HIV by the insurance industry and the need for a more constructive, inclusive and balanced approach.
Finally, we supported an increased priority for accountability under the Disability Discrimination Act and called for independent public annual reporting on outcomes as well as mechanisms to plan and improve access to human services for people with disabilities including HIV.
The Rudd Pension Review
On 15th May, the Federal Minister Jenny Macklin announced a review into the Age pension, Carer payment and Disability Support Pension, to strengthen the financial security of seniors, carers and people with disability including people with HIV.
Recent rises in the cost of living pressures have led to concerns that people on low incomes – particularly those who are dependent on pensions and have few assets – may be finding it harder to make ends meet.
The Pension Review will investigate the appropriate levels of income support and allowances for recipients of the Age Pension, DSP and Care Payment and ensure that any changes are sustainable in the long term.
Positive Life will work with the National Association of People Living with HIV/AIDS (NAPWA), the Australian Federation of AIDS Organisations (AFAO), to prepare a submission to the Federal Government highlighting additional health costs faced by people with HIV, the inability to raise funds in an emergency and the spiralling costs associated with rent, food, petrol and utilities in metropolitan Sydney and regional NSW.
We have also attending a public consultation in Sydney where the chair, Dr Jeffrey Harmer, made specific mention of the issues raised by Positive Life in relation to the costs associated with maintaining health and wellbeing for people living with HIV.
For more information on the UN Convention on the Rights of Persons with Disabilities, read our submission: www.positivelife.org.au/content/submissions
Positive Life NSW values your feedback. If you require further information or would like to discuss our systemic advocacy work, please contact:
Lance Feeney
Senior Project Officer
Systemic Advocacy
Positive Life NSW
Phone: (02) 9361 6011
Email: lancef@positivelife.org.au