• Lupus Victoria

An Urgent Message To Lupus Patients


The Australian Register of Therapeutic Goods (ARTG) has approved an exciting new drug, Saphnelo, to treat adult patients with moderate to severe active Systemic Lupus erythematosus (SLE), who are receiving other Lupus medicines. This means the drug will be available to treat patients in Australia during the course of 2022. Professor Eric Morand, of Monash University, has described the drug as a “game changer” for Lupus patients.


While this is very exciting news for Lupus patients, Saphnelo will be very expensive to patients, unless it is included on the Australian Pharmaceutical Benefits Scheme (PBS). If Saphnelo is included on the PBS, Lupus patients will pay only around $30 per treatment.


To assist the Pharmaceutical Benefits Advisory Committee (PBAC) who considers applications for funding of new medicines – in the decision-making process, it is crucial for Lupus patients to actively participate in the consultation process by completing the online survey on the Australian Government website. This survey must be completed by 25 May 2022. Completing the survey takes very little time. It is very important for Lupus patients to describe their personal experience by referring to the drugs they have taken, the severity of their disease and the impact that Lupus has had on their lives.


The link below directs you to the survey on the Australian Government website. Note that the drug is listed as “ANIFROLUMAB-Saphnelo”.

https://ohta-consultations.health.gov.au/ohta/online-comments-to-pbac-july-2022/


Please act urgently and complete the online survey because it is critical for ALL eligible Lupus patients to be given access to Saphnelo and not only to those patients who can afford to pay for the drug. Act NOW to support Saphnelo to be included on the PBS list.

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