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Cystic Fibrosis

22 June 2021

The Hon. J.A. DARLEY (15:19): I seek leave to make a brief explanation before asking the Minister for Health and Wellbeing questions concerning Cystic Fibrosis South Australia advocating for South Australians living with cystic fibrosis.

Leave granted.

The Hon. J.A. DARLEY: South Australians living with CF rely on properly funded multidisciplinary CF units within the Royal Adelaide Hospital and the Women's and Children's Hospital for essential treatment. In 2012, the work of the SA Health cystic fibrosis working party resulted in increased resources to the above two hospitals, including allied health, administrative support and nursing and medical staff to facilitate the agreed model of care.

The model of care also included funding to provide for an advanced trainee specialist for adult CF to address the national and worldwide skill shortage of adult CF physicians. This is at a time of increasing numbers of adults living with CF. Outreach clinics were included in the agreement but have not been established, and a review was scheduled in five years (2017) but this has not occurred.

As medical treatments improve, the number of adult patients using the service of the RAH increases. Accordingly, future planning for CF care must address increasing patient numbers and those with comorbidities as people with CF live longer. CF services must focus on wellness and preventing complications rather than treating illness, with the provision of increased out-of-hospital care and outreach services.

One-quarter of lung transplant recipients in South Australia have CF. The drug Trikafta is revolutionising the lives of people with CF, with the compassionate access to Trikafta resulting in currently no people with CF on the lung transplant waiting list in South Australia. Further consideration is scheduled next month for Trikafta to be listed on the PBS. South Australians living with CF are understandably desperate to see the drug available for those in earlier stages to improve the quality of their lives. My questions to the minister are:

1. Can the government confirm that the ongoing level of funding will be in accordance with that outlined in the model of care, including the establishment of promised outreach clinics?

2. Will the minister and the government stand with South Australians and the CF community in advocating on their behalf for PBS listing of Trikafta?

The Hon. S.G. WADE (Minister for Health and Wellbeing) (15:22): I thank the honourable member for his question and acknowledge his support in the last sitting week, together with the member for Kaurna in another place, for an information session in the Old Chamber. I would also like to acknowledge the fact that the President graced us with his presence and also the Hon. Nicola Centofanti. Forgive me if my memory fails me in relation to other members of this council who might have been present.

It was a very—I think it would be fair to say—inspiring presentation. The potential impact of the drug Trikafta is quite revolutionary and it does highlight the challenges for health planners when they are planning for such a long-term condition. We heard the testimony of patients who had been able to get compassionate access to this drug and heard what a dramatic change it had on their lifestyle. I had the opportunity at that function to discuss with clinicians: what difference could this drug make? Could it actually prevent the onset of CF with all of its implications? Certainly, the clinicians are very excited about the potential impact.

The honourable member asks me would the government or would I as minister and by implication the government stand with the CF community in advocating for Trikafta? I can assure you that the government would very much welcome PBS listing of this medication. I know that the Hon. Nicola Centofanti has already made representations on behalf of the CF community in South Australia to the commonwealth to give favourable consideration. Of course, there is a process to be gone through, but I am greatly encouraged by the information session that we were part of.

Certainly, SA Health is extremely grateful for the long-term partnership it has had with Cystic Fibrosis SA in terms of the delivery of services and the model of care. Like a number of other non-government organisations, CF SA has a very positive relationship and provides services that complement the SA Health services, which significantly support people with CF in their journey.

As a government, of course, one of our earliest challenges was to deal with the fact that lung services were still isolated at the eastern end of North Terrace when we came to government, and we were very pleased to be able to have a clinic established at the Royal Adelaide Hospital site. When people may well need to have other hospital-based services and access specialist pharmacy services, to have the clinic on the Royal Adelaide Hospital site is a boon to patients.

We look forward to continuing to work with the CF community in partnership to develop services to support them as they live with CF, but we are also very excited to work with them to see if we can prevent CF.