RARE DISEASE POLICY ROUNDTABLE AND DINNER WITH FEDERAL HEALTH MINISTER, THE HON. MARK BUTLER MP

HGSA President Yemima Berman, and ASIEM President Kaustuv Bhattacharya were invited to participate in the rare disease roundtable with Minister Butler on Tuesday 9 April 2024 hosted by Alexion Australia and New Zealand. 

 It was an important opportunity to be able to have a conversation with the minister about the policy opportunities to strengthen access to medicines and better care, diagnosis and support for Australians living with a rare disease.   We know from his comments after the roundtable that the minister very much valued hearing the perspective of those working in the health system to provide support to patients and we saw that in his engagement during the roundtable discussions. In particular he requested more information on genetic counsellors, and how professional genetic counselling benefits patient and family outcomes. 

The first question often asked after forums like this is what comes next? 

Alexion ANZ sees as part of its responsibilities to Australians living with a rare disease, advocacy for better policy outcomes both here and in New Zealand.  Alexion ANZ have actively participated in opportunities like the consultation process undertaken as part of the HTA review in Australia and in the development of a rare disease strategy currently being finalised by the New Zealand government.  We have also been spending time in Canberra talking directly to Members of Parliament about these issues.

Reform takes time and, as the minister indicated, there are many competing priorities in the health portfolio, particularly for funding.  Change will sometimes take time and is something of a marathon.  Work will continue with government and, in this regard, there are discussions regarding opportunities to partner with the McKell Institute to advance policy research and the development of practical options both for short and medium term change.  Alexion ANZ also intend to host a similar roundtable with the Shadow Minister for Health later in the year as the work extends across the parliament in a bipartisan way.  Alexion ANZ is also looking at opportunities to engage state health ministers to ensure equitable treatment and diagnosis within their health systems.

HGSA will kept informed of these activities as they progress our expertise will be called upon.