Latest news & updates

Mental Health is as an important part of disease management as that of physical health. Over the last few months, we have been meeting with Haematologists across the county to understand whether mental health management is included in the patient’s care plans. What we have found out is that different treating hematologists manage this aspect differently.  The agreement across the board is that mental health is an important issue, and doctors will ensure that they continue bringing these discussions routinely. We also identified that there is a lack of participation from the patients’ point of view. As an organisation, we will ensure that we continue […]

Late last year, we made an application for Newborn Screening for Sickle Cell Disease to the Department of Health’s The Standing Committee on Screening. The application process required us to work with clinicians who researched on our behalf to answer the application’s different questions. We want to thank Dr Anthea Greenway and Dr Kongolo Kalumba, who helped us with the application process.  We were stunned at the price of this screening compared to other genetic diseases in Australia and the rest of the world. Just as an example for the same screening, the cost for HPLC has been reported in the USA and […]

In the past few months, Australian Sickle Cell Advocacy Inc has focused on improving raising awareness in managing our mental health. In the past few weeks, we have been meeting Haematologists from different states to confirm the need to include mental health checks in the care plans. We will also continue to remind everyone affected by sickle cell disease to ask for mental health referrals should they need help. In most States in Australia you have up to 10 free counselling sessions. Contact your Haematologist / GP for more details. Hence in this view, we have partnered with Maryland Sickle […]

We are so excited to announce that after almost two years of advocating to have Red Blood Cell (RBC) exchange transfusion for Sickle Cell patients in Western Australia, this is now a reality. This week an adult living with Sickle Cell Disease (SCD) started this treatment at Sir Charles Gairdner Hospital  Perth. Also known as RBC exchange treatment, this is an apheresis technique used to rapidly lower the circulating RBC mass or to exchange the patient erythrocyte mass with donor Red Blood Cells. We are so thrilled that patients in Western Australia (WA) can now also benefit from this treatment […]

As this virus continues its ravages, we are watching what is happening and how this will affect our work for the year 2020. Our thoughts and prayers go to the people who have lost their lives as a result of this virus around the world; to their families and friends who are directly affected. We would like to thank all the healthcare professionals for their selfless act caring for people around the world under very difficult circumstances. People living with Sickle Cell Disease may be at risk of contracting this virus due to their compromised immune systems. For more information about how […]

During this Good Friday Appeal, ASCA’s Founders Preston and Agnes were invited to share the news of their daughter getting cured of Sickle Cell Anaemia. This was one year after sharing the story about their daughter’s treatment. Their daughter was diagnosed with SCD 11 years ago. During this period part of the treatment was having Red Cell exchange every 3 to 4 weeks using the apheresis machine. The Royal Children’s Good Friday appeal helped purchase this machine. And it was a joy to again share their story with this network that their daughter has been cured. See the Founder’s story […]

Good evening ladies and gentlemen, It is my pleasure to present our first Annual Report to our members and special guests in attendance today at the Australian Sickle Cell Advocacy Inc annual general meeting (AGM). Firstly I would like to thank God for making it possible for us to have this event. I would also like to acknowledge the traditional owners of this land past, present and emerging. 2019 has been a very busy year for us. We have been formally registered as a not for profit organisation after operating as a social media initiative for over five years, we […]

17th January 2020, We held our first annual general meeting. The purpose of this meeting was to debrief our past year and look at the activities we have planned for this year. This was also an opportunity for us to meet our general members and interact with invited guests.  The event was another success for which we had tremendous support. Our event was only possible with the attendance of different supporters and stakeholders who included: Ms. Louise McLaren, Associate Director Marketing, Sales and Business Development, Asia Pacific at ApoPharma Inc Mr. Neil Waters – Senior Projects Manager Public Health and Preventive […]

We reported last year that we were sponsored to attend The 14th ASCAT Conference in London UK. We are happy to do a follow up report to update the doors of opportunities that opened as a result of this conference. One of the things we are happy to report is that because of this conference, we are now part of the American Society of Haematology Sickle Cell Disease program. Because of our connections to this program, we were able to connect Australian Sickle Cell Experts with other experts around the world who attended the ASH Meetings last December. As per […]

ASCA attended the 2019 AMCF for the first time. This vibrant event showcases music, dancing, diverse arts, cultural performances, and authentic African food that transports visitors to Africa. This free one-day event is a fun, family friendly affair with non-stop entertainment ranging from cultural performances, catwalk fashion shows, artists in traditional costumes and iconic drumming – all creating a memorable and unique experience that promotes cross-cultural awareness and understanding of African culture in Australia as described by AMCF. We are happy to attest that this was what we experienced. Our day went so fast spending over 15 hours of our […]

We are ecstatic to report that our own Federal Member of Parliament (MP), Honourable (Hon) Maria Vamvakinou of Calwell, has become the latest member of the Australian Sickle Cell Advocacy Inc (ASCA) family. Hon Maria Vamvakinou will join ASCA as an ambassador to help advocate and bring greater awareness to the objective of improving the lives of those affected by sickle cell disease (SCD) in Australia. Hon Vamvakinou MP is the first Greek-born woman to be elected to the Parliament of Australia. Born on the island of Lefkada Greece in 1959, she migrated to Australia with her family in 1963 […]

We are so delighted that Hon Greg Hunt Federal Minister of Health replied to our letter where we asked his office what they were doing to improve services for sickle cell patients in Australia. We acknowledge that the Federal Health Office is working towards some better services for SCD patients in Australia.  Part of the contents of the letter includes: There are a range of services listed on the MBS that may be relevant to private patients undergoing diagnosis and management of sickle cell disease, including pathology tests for full blood evaluation and blood film (MBS item 65070), testing for […]

One of our top objective is to raise awareness about sickle cell disease that is considered a rare disease in Australia. Our area of focus is firstly to the people who are at risk of having the sickle cell trait. We would like to see that every individual who is at risk of having this genetic condition is aware of their risk. They can only know by getting tested to know their sickle cell status. Another area of focus is highlighting this condition to the healthcare professionals like Nurses and doctors. One of the things we would love to see […]

One of the ways we like knowing what affects the sickle cell patients is by interacting with the doctors who treat these patients. The doctors and nurses treating these patients can give us valuable information that can advance our knowledge on which direction to follow in meeting our objectives. Hence ASCA Executive Director met with the team treating the SCD patients at Monash to not only build a relationship with this hospital but also to ask how we can help this centre. It was nice to meet the two haematologists, the Nurse Coordinator and the social worker. We are happy […]

On 20th November, ASCA had an opportunity to meet Hon Peter Khalil, Federal Labor Leader for Willis. This meeting was set for us to lobby Federal Labor Leader for Willis to advocate for better services for people living with SCD on our behalf. The meeting was very successful and Hon Khalil has promised to help us raise awareness about this disease. We hope to make an announcement on how this will be done in the coming weeks. It was very nice to actually know that Hon Khalil understands this disease very well.

On 18th November, we were delighted to accept an invitation to the Chartered Accountants Connections Networking Event. It was nice to talk to the corporate world professionals and other not for profit organisations who attended the event. We took this opportunity to make connections and uphold our objectives. It was nice to connect with a few people who promised to work with us in the future.

13th November became a memorable day for us. After over one year of advocating for National Sickle Cell Disease treatment guidelines,  the Haematologists treating SCD patients across the country have started the process to formulate these guidelines. Over the past few months, we have managed to highlight the need and absence of local consensus treatment guidelines for Sickle Cell patients in Australia and we drove the implementation of this initiative. On 13th November, we were invited to the sickle cell disease round table here in Melbourne where we represented our members and the sickle cell disease patients in Australia. We […]

On 18th October 2019, we had the privilege of accepting an invitation from partner organisation Rare Voices Australia to attend an event at Parliament in Canberra. The event was to see the launch of the report, ‘Disability & Rare Disease: Towards person-centered Care for Australians with Rare Disease. RVA’s CEO, Nicole Millis also provided an update on the National Strategic Action Plan for Rare Diseases. The event was co-hosted by Dr. Mike Freelander MP and Mr. Trent Zimmerman MP. This event gave us an opportunity to interact with other patients organisations representing different rare diseases. It was also an opportunity […]

On 19th October 2019, ASCA Executive Director Agnes and the Co-Founder of the organisation Preston flew to London to attend the 14th ASCAT conference. The ASACT Conference is the largest Sickle Cell Disease (SCD) conference in Europe which showcases the latest advances in diagnosis, treatment and emerging fields in haemoglobinopathies. It is also an opportunity to interact with clinicians and patient groups on the latest advances in clinical care, transition services and emerging new therapies including updates for curative treatment options. This year’s theme was “Sickle cell and Thalassaemia disorders new treatment horizon; while ensuring patient safety and delivering excellence […]

25th September 2019, we celebrated yet another milestone in our organisation. We launched the first-ever sickle cell disease support meetings in Australia. These meetings were part of our promises at the official launch in June 2019. ASCA has members that are affected at different levels of this disease. We have patients that are directly affected by this disease, we also have parents who have children with sickle cell disease. Other family members and friends are also part of ASCA. The need to have a face to face support group was something that was necessary to introduce. Our first meeting attracted […]

On 26th August 2019, ASCA was invited to the Pascoe Vale RSL Club to give a talk about sickle cell disease in Australia. This opportunity availed to us made it possible to accomplish what our association is meant to be doing. With a room of about 20 people, ASCA Executive Director Agnes and the Support Networks Coordinator Peter gave a presentation outlining our mission, values, and objectives. Agnes was able to share the history of the association and the reasons behind starting this initiative. Agnes was also able to share her personal story to highlight just how complicated this disease […]

Hon Maria Vamvakinou officially launched the official opening of our association on 19th June 2019. On 24th July 2019, Hon Vamvakinou reported this event in Parliament. The video when Hon Maria was presenting is here: https://youtu.be/FzSKSpWsXVc

This year, ASCA participated in the Run Melbourne supporting people affected with sickle cell disease being treated at The Peter MacCallum Cancer Centre in collaboration with Melbourne Health. More importantly, supporting people living with Sickle Cell disease in Australia.

On 17th August we continued our mission. This time we were at the African Australian communities consultation regarding Strengthening African Communities and Capacity Building in Preventing Family Violence. This is an opportunity for us to also discuss the need to have health discussions in our families. This topic is often avoided and rare in some cultures. We are breaking the barriers and saying it’s ok to talk about difficult topics. We will be encouraged to test for the sickle cell gene and offered information for people affected / from risky areas.

On 17th August, ASCA had the pleasure of accepting an invitation from the African Women’s and Families Network Community Conversations. This event was all about raising awareness about family violence. At this event, we heard stories of different types of family violence. We had an opportunity to give a presentation on the need to have genetic testing. Having a child with a medical condition can bring differences in a home. Hence it is important first of all for families that originate from countries where sickle cell disease is prevalent for example to understand how someone can have sickle cell disease. […]

ASCA attended the Malawian Independence Celebrations. This event made it possible for us to continue our cause of ensuring people who could be at risk of having the Sickle cell Trait have information that will help them make informed decisions.

This week we continue our mission. This time at the youth art and musical talent competition. Excited to talk to the youth about sickle cell disease. We encourage testing for the sickle cell gene and offer information for people affected.

ASCA launched the first advocacy group solely dedicated to supporting people living with sickle cell disease in Australia. The launch was held at the Royal Children’s Hospital. It was officially opened by Hon maria Vamvakinou, the Federal Member of Parliament for Calwell. The event was sponsored by CSL Ltd and was privileged to have Vice President for research Mr. Micheal Wilson attend the event. Over 100 people attended the event, including representatives from The Australian Red Cross Blood Service, Rare Voices, Novartis Australia, Mr Mwese, a representative for the Zambian  High Commissioner to Australia Mr Frank Bwalya, Thalassaemia, and Sickle […]

Executive Director @aggien_mn had a lovely #meeting this morning with @mariavamvakinou_mp discussing #SickleCell in #Australia. Discussed the need to have a #SCD surveillance registry, prenatal screening of at-risk communities, more research on this condition among other things. A very productive meeting.