Positively changing policy

The Australian Multiple Sclerosis Longitudinal Study (AMSLS), a survey-based research study that has been running since 2001, is used by policy makers and MS medical and support services to create positive change and improve the lives of people with MS.

The impact of the AMSLS is wide-reaching. For example:

• AMSLS-based research on comorbidities and lipids has been used to develop lifestyle recommendations for people with MS and health professionals.
• AMSLS-based fact sheets on the burden of disease are frequently sent to journalists and politicians, and findings are embedded in roadmap documents and submissions to the Pharmaceutical Benefits Advisory Committee. As a result, the medication Ofatumumab was listed on the pharmaceutical benefits scheme (PBS) in 2021, saving people with relapsing remitting MS $28,000 per year.
• AMSLS-based research on employment and work productivity has been used to develop an online intervention called MS WorkSmart. A randomised controlled trial will test the effectiveness of MS WorkSmart.
• Reports based on AMSLS data have been used for service planning, service delivery and pharmaceutical reimbursement applications by MS Australia, MS Plus, MS Queensland, Merck, Roche, and Biogen.
• The 2022 MS Nurse Care in Australia report, based on AMSLS data, is being used to lobby for additional and better access to MS nurses.