Cystic Fibrosis

Ms WORTLEY (Torrens) (15:36): Today, I rise to acknowledge May as a month of spreading awareness for a number of important causes, one being cystic fibrosis awareness. Throughout May, Cystic Fibrosis South Australia aims to recognise people living in our communities who are fighting CF, as well as recognise their families and others impacted by this condition, spread awareness and work towards finding a cure.

Across Australia, Friday 24 May 2019 is 65 Roses Day, when funds will be raised through many different events to help support vital services, programs and research for children and adults with CF. It is estimated that one in 25 Australians are carriers of the CF gene and that the majority are unaware of their status. For CF to be transmitted, both parents need to be carriers. In such a case, their child would have a one in four chance of having CF and a one in two chance of being a carrier.

Cystic fibrosis is a genetic disease that affects several organs in the body, particularly the lungs and pancreas. Repeated infections and blockages can cause irreversible lung damage and even result in death. This means that people with CF can have problems with nutrition, and many also have a unique form of diabetes. Cystic fibrosis is the most common genetically acquired life-shortening chronic disease affecting young Australians today. One in 2,500 babies are born with CF, with their life expectancy being 35 to 37 years.

However, there are cases where people have been diagnosed later in life, like local Torrens resident Glenys Kandelaars, who was diagnosed with cystic fibrosis at the age of 61. She was told that she needed a lung transplant but first must gain some weight and work on her fitness and stamina. Countless tests were done to assess her suitability for a transplant. Not everyone is fortunate to reach the point of being suitable and compatible for such a transplant. Glenys' husband, known to many in this place, Gerry Kandelaars, resigned from his position as a state Labor MLC to care for her full time. In his valedictory speech, Gerry said:

It has been a great honour and a privilege to have served the South Australian community in this place. However, I have greater responsibility as the carer of my wife, Glenys, the love of my life for over 40 years.

On Friday 28 February 2017, the family received the news that Glenys was officially on the waiting list for a double lung transplant. At this point, they were informed that the waiting time could be anywhere from six hours to more than six months. At 4am on 17 May 2017, they received the life-changing call from the transplant coordinator in Melbourne to say that it was time—they had a donor. Glenys was transported via ambulance from the RAH to the Royal Flying Doctor Service airport terminal and on to Essendon airport and the Alfred Hospital in Melbourne, where the transplant was performed. Glenys recalls:

From the very first day after surgery, I felt so much better. My first lung capacity reading post op was 87 per cent and has since been over 100 per cent with an average of around 98 per cent. Prior to transplant it was 18 per cent.

Gerry said that the events of the last few years have highlighted to him the value of the public health system and the quality, empathy, passion and talent of those men and women who work in the public health system across Australia. We are fortunate in Australia that, since 1990, babies have been able to be screened for CF; however, such screening is not without considerable financial cost. Gerry put his views on the record, saying:

I strongly believe that prospective parents should be reimbursed through a Medicare rebate for voluntary genetic testing and genetic counselling to determine their carrier status for genetic disorders such as cystic fibrosis.

I have seen Gerry and Glenys around the community and I am pleased to say that they are enjoying life, including travelling interstate to visit their grandchildren. Today, I have shared an inspiring story of a survivor, a fighter and a great advocate for those living with cystic fibrosis. It is so important to continue to spread awareness of this disease and others to help our community come together in support of finding a cure.

Finally, Gerry and Glenys would be unforgiving if I did not mention the significance of organ donation. It is so important that families have this discussion. Glenys's life today and that of her family are wonderful examples of how organ and tissue donations save and transform lives.