Welcome to week Two of the ASCA Conference update

We have less than two weeks before the Australian Sickle Cell Advocacy Inc Inaugural Conference. We are thrilled to have you join us. Please see our update for this week. We will endeavour to bring you another summary next week before the final update just before the set date. Save the DATE...17th and 18th September 2021. 
The conference will be held on the Whova app, via zoom. Please familiarise yourself with this platform. See the guidelines here for speakers / presenters and participants / attendees. Once you register we will send you a link to create your profile on the app. 

Information for speakers / presenters is on this link.

Information for participants / attendees is on this link.
 

Come meet and hear from our Australian Conference Experts!

The Australian Sickle Cell Advocacy Inc is grateful to have over 20 Australian experts joining us for our Inaugural Sickle Cell Disease Conference. This conference is not only the Inaugural conference for ASCA but is also the first-ever Sickle Cell specific event to be held in Australia. For that we are grateful to all our invited guests.

Our experts range from adult Haematologists, Paediatric Haematologists, clinical nurse specialists working in the Haematology units, The Australian Red Cross Lifeblood experts, The Haemoglobinopathy Registry experts, other rare disease organisation experts, metal health experts, genetic counsellors, Department of Health experts, experts knowledgeable in the PBAC/PBA systems, The CEO for Medicines Australia, Scientists and a journalist specialising in the pharmaceutical industry. 

We are incredibly excited to have such a diverse range of experts join us for this Inaugural Conference. 

Some of the Conference Topics

In this week's issue, we look at a few topics that will be presented in this conference. We have a planned a full two event packed with speakers in Australia and different parts of the world. Here are some of the topics that will presented. 

The Haemoglobinopathy Registry Presentation 

Some might ask why this is a crucial topic for us? 

The Australian Haemoglobinopathy Registry is a database for collecting medical information which is highly relevant for improving the services for people impacted by sickle cell disease. For those that are not aware, currently, we have four drugs to manage Sickle Cell Disease (SCD) in the USA and some European countries. However, we only have one drug in Australia available to people living with SCD, this is Hydroxyurea. 

This department's data collection is not only crucial for Australia to convince relevant authorities as to why other treatment options should be approved in Australia, but is also important for research which will enhance the lives of people living with SCD. Hence, one of our objectives is to one day have a clear up to date database set for all people living with SCD in Australia. Prof Erica Wood will be presenting this topic.

Pain Management in Paediatrics and Adults with Sickle Cell Disease   

Sickle Cell Disease is mainly associated with pain episodes also known as vaso-occlusive crisis. 90% of hospitalisation for people living with sickle cell disease are a result of these pain episodes. Pain episodes impact both on the physical and psychosocial wellbeing of people living with sickle cell disease and their families. This topic will be relevant for people impacted, to understand how to deal with this common crisis. Prof Wally Smith will be presenting this topic.

Mental Health Support for People Impacted by Sickle Cell disease

The Conference will highlight the significance of talking as a way to break the barrier of stigma attached to living with sickle cell disease. This will also highlight the importance of mental health services for both patients and caregivers. Individuals with rare diseases are at higher risk of depression and anxiety. Physical and mental health cannot be treated as separate issues. Having a mental disorder in addition to a physical disease affects patients quality of life and can even decrease life expectancy.

Numerous studies have linked the work of family caregivers to depression, anxiety and stress. The conference will provide mental health resources for patients and caregivers. Mental health experts will be included as guest speakers for the conference. We have Dr Catherine Nyuthe, Dr Marjorie Dejoie-Brewer and Dr Catherine Muyeba present different topics on The importance of managing the Mental health aspect of people impacted by SCD. 

Clinical Research and Curative Therapies in Sickle Cell Disease
This is another topic to look out for. This topic is particularly important due to the fact that currently the only known and most common cure for sickle cell disease is by Bone Marrow Transplant. However, this too has limitations and comes with risks and complications.

Not everyone is eligible to have this treatment, and even those that might be eligible are often hesitant due to the risks. In Australia, we are lucky to have accessibility to this treatment. The majority of people who are affected by sickle cell disease come from sub-Saharan Africa and this treatment is not readily available even to those that might wish to receive it. 

In Australia, this treatment has only been offered to children in very recent years. Hence, this topic is very critical. There is a lot of news around gene therapy / gene editing and people impacted by this disease will particularly be interested to get clear information. We have Prof Joy Ho AM, Prof Merlin Crossley and Prof Andrew Perkins presenting different topics around this area of research. 

Early Detection and Newborn Screening for Sickle Cell Disease

Another area that is very crucial, is that of prenatal and newborn screening for sickle cell disease. This area is incredibly important as early detection will make it possible for Physicians to start managing children with sickle cell disease early, thereby avoiding some of the complications suffered by children whose parents may not aware that their children have sickle cell disease.

In Australia we do not have newborn screening for sickle cell disease. ASCA has been advocating for this screening since our formation. In November last year, we submitted an application to the Department of Health which has subsequently been accepted for a full review. This is a step closer to having this screening implemented in Australia. However, this is a lengthy process, so unfortunately even if our application ends up being accepted by the review officers, Newborn Screening for SCD still is not guaranteed to be carried out as it is up to State governments to accept the recommendation and fund the screening.

We are honored to have both The Hon Minister Greg Hunt MP and  Hon Mark Butler MP as our guests of honour so that they may both see this presentation. We are also thrilled to be joined by our official ASCA Ambassador Hon Maria Vamvakinou MP. This topic is very important is meeting our objective to having the newborn screening implemented in Australia after the review period.
 
         


Early detection and Newborn Screening in Sickle Cell Disease will be presented by Dr Pasquale Barbaro and Dr Catherine Chunda presenting on this topic.  

Covid-19 and Sickle Cell Disease

Another area of focus is that of the coronavirus presentations. In our second year now, just like that the Covid-19 pandemic has taken over the entire world. We have lined up two presentations to tackle the issue of this virus. One on the overview of covid-19 and sickle cell disease and the over on the covid-19 vaccines in relation to sickle cell disease. We have our Board Member Dr Kongolo Kalumba and Prof Isaac Odame presenting on this topic. For information about covid-19 in Australia, see this link. For all other parts of the world see this link. 

In next week's issue, we look at other different topics to be presented at our conference. Please do not forget to register if you have not already done so. We have prepared an exciting two days with participants from all over the world.... literally. Meet part of our ASCA members below who are participating in this conference. We are thrilled to have you join us.

Meet The ASCA Members

Australian Sickle Cell Advocacy Inc is is a not-for-profit organisation supporting people living with Sickle Cell Disease (SCD) in Australia. It is the peak body in Australia looking out for people affected by this disease. We have chapters in Melbourne Victoria, Sydney New South Wales, Perth Western Australia, Brisbane Queensland, and Adelaide South Australia. We have representative from all these states participating in this conference.

Our team will be presenting their life experiences with sickle cell disease as well encouraging other people on their journey through the years. Our team will also be playing important roles behind the scenes to make sure that the conference run smoothly. We are grateful to have our Board Chairperson Dr Marguerite Evans- Galea AM and Board Members Dr Anthea Greenway and Dr Kongolo Kalumba also participate in this conference. We look forward to have you all join us. Thank you for your support.