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House of Assembly - Fifty-Fourth Parliament, Second Session (54-2)
2020-03-03 Daily Xml
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Huntington's Disease

Ms LUETHEN (King) (15:45): I rise today to speak about some important conversations I have had with locals in the King electorate about health services and Huntington's disease. People in King have told me that better services in health care are a key priority for them, and I am taking their hopes and concerns very seriously. They voted for change in 2018 after having what they had to say and their needs ignored for 16 years. Now I am taking every moment I possibly can to listen.

My constituents have taught me about Huntington's disease. It is a degenerative, incurable and fatal illness caused by the steady breakdown of nerve cells in the brain. They told me that Huntington's can cause involuntary movement, which is often associated with uncontrollable jerking or spasming of a sufferer's body. Other symptoms can include an impairment of coordination or balance, difficulty speaking and swallowing and sometimes cognitive or psychiatric symptoms.

The disease is caused by an inherited defect in a single gene of a person, and a person needs only one copy of the degenerative gene to develop this disorder. When a child is born, the newborn inherits two copies of every gene: one from the mother and one from the father. This means that a parent with a defective gene could pass on a copy of the defective gene or a healthy copy, resulting in each child having a 50 per cent chance of inheriting the gene that causes Huntington's.

Some people who carry the Huntington's gene are moving heaven and earth to avoid passing the defective gene on to their own children. Last year, when I visited King residents Adrian and Elinor Matthews of Yattalunga to learn more about their family's history of Huntington's disease, they opened up about their experience. Unfortunately, Elinor is a carrier of the disease and it has had a significant impact on her life. Elinor experiences involuntary movements within her muscles and balance issues, which have impacted the way she and her husband run their barramundi farm. Elinor's Huntington's gene has been passed onto the couple's daughter, who is now going through IVF in order to stop the gene in its tracks and ensure she does not pass it on to her own children.

As we are all aware, IVF is an extremely expensive procedure, but it does allow doctors to locate the defective Huntington's gene and discard any fertilised eggs that will carry the disease. My constituents tell me they believe that this process would help us create a healthier community in South Australia. However, due to the significant cost, many of those living with the gene cannot afford this procedure and may not go through with it. Adrian and Elinor believe that, if there were some way for those living with the Huntington's gene to receive funding support in order to go through IVF, the disease's reach could be significantly eradicated.

Recently while I was doorknocking, I met Salisbury Heights resident Linda Stachow, who has also been impacted by Huntington's disease. Linda's son is a sufferer of the disease and struggles in many ways with how it impacts his life. Linda told me her son receives NDIS funding. However, due to his high needs sometimes this funding does not adequately address the specialised needs of her son and other sufferers.

Not-for-profit organisation Huntington's SA and NT works with residents to provide support services to those living with the disease. Many sufferers can become isolated due to the effects of the disease. Huntington's SA and NT does all it can to provide outreach services to start the conversation with those impacted and to provide them with information on how to move forward with their lives. I thank them for their ongoing support to the community.

More can and, my constituents tell me, must be done to deliver better services to people and families impacted by this illness. It is important that we continue to shine light on how this incredibly complex and devastating disease is impacting our families. I certainly will continue to be a strong voice for real change and better services for people living in King and to explore what I can with my colleagues to help people get better health outcomes in South Australia. I thank my community members for taking the time to share their lived experience and their hopes with me.

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