Today I speak about an issue that recently was raised with me by constituents of mine. Earlier this week, on 19 June, we marked World Sickle Cell Awareness Day. Sickle cell disease, or SCD, is an inherited condition which affects the production of haemoglobin in red blood cells, which carry oxygen around the body. As it is relatively rare in Australia, it is not well understood. However, the genes for SCD are more often found in people with any of the following ethnic backgrounds: African, Middle Eastern, southern European, South Asian, South American and Caribbean. In a patient with SCD, rather than healthy round cells, a C‑shaped cell is formed, similar to a traditional farming tool called a sickle. The shape and limited lifespan of sickle cells lead to an ongoing shortage of red blood cells and may also cause blood vessels to be blocked.

It can be a life-threatening condition and causes chronic pain, infections and other medical complications. It can be managed with regular blood transfusions and medication. A bone marrow transplant is the only known cure. Australian Sickle Cell Advocacy, or ASCA, was founded in 2014 by Agnes and Preston Nsofwa to provide education, information and support for patients with SCD and their families. Recently, the ASCA held an information and support session in the Liverpool area in recognition of the fact that an increasing number of those living with SCD have made Liverpool their home. I congratulate Dillys Chi on organising such an important event. The evening featured a presentation on the latest treatments available for those with SCD by Dr Annmarie Bosco, a haematologist specialising in blood disorders at the Prince of Wales Hospital, and a session on looking after mental health and wellbeing by Dr Winnie Foley. The evening also featured lived experience speakers, or warriors, entertainment and food.

Importantly, I was advised by ASCA that New South Wales does not have systematic data collection of those who have been diagnosed with SCD to better understand factors impacting quality of life and the level of interaction with the healthcare system. This also means that we do not even know where those who live with SCD are located around our State. It is of vital importance that we better understand the circumstances of those who live with SCD so that we can better plan and deliver the services that are required for their care. ASCA is advocating for the introduction of a newborn screening process for Australia. Newborn blood spot screening aims to identify babies at risk of developing certain rare conditions and metabolic disorders where early intervention can improve health outcomes. This is available for SCD in many countries, but currently not in Australia.

Often the only way that some parents know to request in utero genetic testing for SCD when they fall pregnant is because they have previously been identified as genetic carriers in their country of origin. Others are not so lucky and are only diagnosed after experiencing a crisis. Early testing would ensure that diagnosis is made when a range of different treatment options is available. We know that, when it comes to chronic illness, early intervention is crucial to improving quality of life, and it reduces the impact on the healthcare system down the track from further complications. Furthermore, a number of healthcare professionals who attended the evening identified that there is a disconnect between the location of services used to help manage SCD, such as thalassaemia and sickle cell haemoglobinopathy, and where the population living with SCD is concentrated. This means that while those who live with SCD live and often work in south-west Sydney, such services currently are concentrated in central and eastern Sydney.

When people are forced to travel great distances for vital healthcare treatment, they may encounter many barriers, including the cost of transport, time to travel and undergo treatment, lack of childcare options while receiving treatment, and other barriers. We are very fortunate in New South Wales that our healthcare system offers wraparound treatment and support for many chronic conditions to ensure that our community has the opportunity to live their best life, all for the cost of their Medicare card. However, as our community in south‑west Sydney rapidly grows and changes, we must pay attention to the changes required on the ground for our community to access much-needed services. Our increasingly multicultural and geographically dispersed communities deserve equity in access to life-changing and life-preserving interventions and services.