ASCA attends African Music and Cultural Festival (AMCF)

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 hapy to attest that this was what we experienced. Our day went so fast spending over 15 hours of our day there. At this event, we were able to engage with people in the community who are at risk of havng the sickle cell trait. A huge opportunity for us as we connected with so many people who identified with our cause. Looking forward to ttending future events.

Sickle Cell presentation at RMIT

One of our top obejctive 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 is that heathcare professional know about this condition during their training at respective learning institutions. So it was an honour for us to be invited to give a talk to RMIT university where we presented on SCD to the Nursing lecturers. It was extra special because we had the Associate Dean Health and Sciences attend the presentation too. We are inviting different learning institutions to cal on us to give similar presentations.

A letter from Hon Greg Hunt Federal Minister of Health

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 the 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 the presence of the causative haemoglobinopathy (Hb S) (MBS item 65081), as well as consultation items which support the ongoing management of patients by practitioners.

“In addition, the Government supports access to affordable medicines through the Pharmaceutical Benefits Scheme (PBS). Subsidised prices are available for the following medicines that may be relevant to Australians living with sickle cell disease:

  • Hydroxyurea, a part of sickle cell therapy, has an unrestricted benefit on the PBS;
  • Pneumovax 23 has a restricted benefit for prophylaxis of pneumococcal infection in patients with a high risk of contracting pneumococcal infections – sickle cell patients would fall into this category;
  • For patients with iron overload because of chronic red cell transfusion, iron chelation may be available on the PBS (e.g. Deferasirox) in some circumstances; and
  • Complications of sickle cell disease involve many body systems and some PBS medicines may be relevant in specific circumstances.

The Medical Research Future Fund (MRFF) provides a long-term sustainable source of funding for endeavours that aim to improve health outcomes, quality of life and health system sustainability. Under the MRFF 10 Year Plan, $614 million is committed under the Clinical Trials Activity – Rare Cancers, Rare Diseases and Unmet Need Clinical Trials Initiative, to support new clinical trial activity focussing on rare cancers, rare diseases and unmet medical need.

This funding will create opportunities to improve the health outcomes for members of the Australian community living with serious health conditions whose diagnosis or treatment is not adequately addressed by existing options, such as for those with sickle cell disease. There will be more grant opportunities in the future and Australian researchers will continue to pursue their research endeavours to find better treatment options and cures”.

However, more can still be done in other areas and improve some existing areas. We have since replied to this letter and we have sent our recommendations. One of our recommendations includes advocating for the government to fund the Haemoglobinopathy registry. “Determining the prevalence in Australia will not only prepare the government to meet the needs of the patient now and in the future, but will also compare disease burden across locations or time periods. According to Ward 2013, the prevalence and incidence of disease are among the most fundamental measures in epidemiology. Ward M. M. (2013). Estimating disease prevalence and incidence using administrative data: some assembly required. The Journal of rheumatology, 40(8), 1241–1243. doi:10.3899/jrheum.130675”

See the letter here.

ASCA meets Federal Labor Leader for Willis

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. 

ASCA meets the Haematology team at Monash health

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 that we will have a continued relationship going forward, to connect with patients being treated at this centre.

 

ASCA attends the Chartered Accountants Connections Networking Event

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.

ASCA represents Sickle Cell patients at the sickle cell round table

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 strongly believe that had we not highlighted this need in that past year, it was going to take clinicians a while before they could start this process. We would like to thank all clinicians who are part of this round table. We understand it is a process but we are very confident it will be accomplished.

ASCA attends the 14th Thalassaemia and Sickle Cell Conference (ASCAT)

ASCAT2019 Conference report
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 in routine patient care”.

The conference kicked off with a pre-conference patient workshop. This workshop was on a Sunday evening a day before the conference. We were privileged to be invited to this workshop. The workshop was a joint initiative by ASCAT and the Euro BloodNet. It was facilitated by the Oxford Blood group and was sponsored by Novartis, Pharma AG and Global Blood Therapeutics, Inc. The workshop was attended by 28 people from European countries and non-European countries. This was an informal setting getting to know patients from across Europe, UK, USA, South America and some African countries.

The main theme of the workshop was to look at the patient and public involvement (PPI), how and why should patients get involved. During this exercise, patients and carers brainstormed on what research topics clinicians and researchers should concentrate on in order to meet patient expectations. The participants came up with a total of 40 questions out of which the top 10 questions were selected and presented on the first day of the conference.

This conference had on average 18 presenters per day highlighting the latest advances in treatment and emerging therapies in both SCD and Thalassaemia.

ASCA did a poster presentation about Sickle Cell Disease Advocacy in Australia. This poster was authored by Agnes Nsofwa, Nathalie Kapuya, Mayase Jere, Peter Leos, Preston Nsofwa and Sarah Tregenza. In this poster, we highlighted what our association has been doing in the past year. We emphasised our reasons for advocating for SCD in Australia including our objectives. Furthermore, we included our achievements to date and our action plan going forward. The poster is attached here with a few pictures for the event.

ASCAT 2019 REPORT

ASCA POSTER PRESENTATION FOR ASCAT