In 2015, the NSW government enacted its pre-election commitment to waive the pharmaceutical benefits scheme (PBS) co-payment for s100 HIV antiretroviral medications in NSW. This meant people living with HIV (PLHIV) were no longer required to pay a co-payment for their HIV medications.

Five years later, the NSW Ministry of Health (NSW Health) approached Positive Life to find out PLHIV's experiences of the co-payment waiver and understand the best way to continue the administration of the co-payment initiative into the future. In October 2020, Positive Life NSW (Positive Life) consulted with PLHIV in NSW via a community survey.

This HIV antiretroviral (ART) Co-payment Initiative Survey Report:

• discusses respondents’ reported awareness of the co-payment waiver, including their stated privacy concerns and associated issues;
• describes respondents' experiences of the co-payment waiver;
• shares respondents’ experiences of s100 HIV medications in NSW including access, prescribers, collection, and experiences with ordering prescriptions online;
• discusses respondent's experience managing paperwork such as the s100 Patient Consent Form and the PBS Safety Net threshold; and
• offers five recommendations regarding the continuation of the NSW s100 HIV medication co-payment initiative, and options to improve the co-payment initiative in the future.

Recommendations:

1. Increase awareness and education of the s100 co-payment waiver to people living with HIV across NSW.
2. Increase awareness of the s100 co-payment waiver to NSW Health sector partners and allied health service providers.
3. Positive Life NSW to continue partnering with NSW Health to consult with community members about their experiences accessing the s100 co-payment waiver initiative.
4. Liaise with NSW Health and ASHM around the s100 Patient Consent Form.
5. Following the Australian Government’s announcement to expand s100 co-payment waiver access to all people living with HIV who are ineligible for Medicare, to raise awareness around this policy change for people living with HIV in NSW.