Legislative Council Fifty-Fourth Parliament, Second Session (54-2) 54 2 Parliament of South Australia Legislative Council published Matters of Interest Cystic Fibrosis Cystic Fibrosis The Hon. J.A. DARLEY Legislative Council The Hon. J.A. DARLEY (15:36): Each year, cystic fibrosis (CF) is diagnosed in seven babies in South Australia and 90 in Australia. CF is the most commonly occurring genetic disorder. CF is a permanent, incurable, degenerative disease and complex multiorgan condition that affects a person's ability to function in multiple ways. It leads to complications that generally progress in severity and prevalence with age. Whilst CF is a life-limiting disease, improvements in treatment, care and medicines have led to dramatic improvement in life expectancy and quality of life. People living with CF rely on the multidisciplinary CF units at the Royal Adelaide and Women's and Children's hospitals. In 2012, the SA Health CF working party established a model of care to increase resources at the two treatment hospitals. Outreach clinics were included in the model but are yet to be established. A five-year review is yet to be undertaken. Cystic Fibrosis South Australia provides services and advocates on behalf of the CF community. It does not receive financial support from government but has been meeting its needs through fundraising and donations. CFSA has sought accommodation in a recent letter to the Treasurer, and the matter is now receiving attention. At the national level, CF Australia have been advocating for equitable disability and health supports for people with CF and have put in a submission to the federal government stating that: People with CF should also have access to the NDIS as the disease is extremely debilitating and external care supports for the most basic tasks are urgently needed. It is staggering that the case needs to be made by CF Australia for NDIS to be made available to its community. CF Australia notes, 'There are gaps between health related supports and eligibility for NDIS funded supports,' and that NDIS funding is needed to help with daily life, to participate in the community, reach goals, and support those remote from health services to remain in control of their lives. It is very disappointing that CF Australia has been forced to make the case for what the health system does not provide and what people with CF could do with NDIS funding. Similarly, it is very disappointing that CF Australia must advocate for the drug Trikafta to be listed on the PBS when it is revolutionising the lives of people with CF who have had compassionate access to the drug. Currently, it has resulted in no people with CF being on the waiting list for a lung transplant in South Australia. At a recent presentation at Old Parliament House, Zoe, a young woman living with CF, provided an inspirational account of the challenges of CF and her hope for the future. Taking Trikafta has bought her more time and significantly delayed the need for a lung transplant and she wants the drug available for all who have CF. The Minister for Health and Wellbeing, with his counterpart health state ministers, needs to support Trikafta being listed on the PBS and support the inclusion of people with CF in the NDIS. Outreach clinics, referred to in the model of care, with the focus on quality of life and evolving needs of people with CF, must urgently be established by the minister. In addition, given the minister's statement yesterday that SA Health and CFSA are working very collaboratively and productively together, his full support for government urgently meeting the accommodation needs of CFSA can be expected.