COVID-19 & SCD – Expert advice for People living with SCD

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 this virus can affect people with SCD,  see this see the links below.

 

See the attached expert advice for COVID-19 and SCD guidelines for children with Sickle Cell Disease here.

See the attached expert advice for COVID-19 and SCD guidelines for adults with Sickle Cell Disease here.

For more information and updates on this virus in Australia see this link

 

Channel 7 News Melbourne Reports on cure of Founder’s daughter

During this Good Friday Appeal, ASCA’s Founders Preston and Agnes were invited to share the news of thier daughter getting cured from Sickle Cell Anaemia. This was one year after sharing the story about their daughter’s treament. Their daughter was diagnosed with SCD 11 years ago. Durig 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 thier story with this network that their daughter has been cure. See the Founder’s story here and the vidoes about the two events.

 

Founder’s story

2019 News about red cell exchange

2020 She is cured!!

ASCA AGM 2019 – President’s report

PRESIDENT’S REPORT

 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 initiatives for over five years, we have also participated in a lot of events as well attended a few meetings around the world. We have engaged with different stakeholders and policymakers.

Events during the year

The Committee arranged and participated in many events this year, some of which included:

  1. Formal registration of the organisation
  2. The official launch of the organisation with over 140 people attending
  3. Engaged with different multicultural communities to raise awareness about sickle cell disease (SCD) and encouraging people to get tested for the sickle cell trait (SCT).
  4. Driving the implementation of the SCD treatment guidelines (process has started)
  5. Engaged with different State and Federal ministers who are advocating for better services for people affected by SCD on our behalf
  6. Started the first-ever sickle cell disease support group meetings in Australia
  7. Being recognised by the office of Federal Minister of Health
  8. Ongoing Engagement with the Federal Minister of Health regarding SCD in Australia
  9. Recommendation to improve SCD services in Australia sent to the Federal Minister’s office
  10. Engaged with makers of hydroxyurea to have other doses of this drug available to patients in Australia
  11. Ongoing Engagement with major hospitals in Australia to raise awareness on SCD / SCT
  12. Our work recognised in the Federal Parliament and invited to question time in Parliament
  13. Represented Australia at the Annual Sickle Cell and Thalassaemia (ASCAT) Conference in the UK
  14. Represented Australia at the first-ever Global Alliance of Sickle Cell Disease Organisations (GASCDO) in Amsterdam
  15. More people able to discuss SCD in Australia more than ever before based on the different social media communications and the professional page LinkedIn
  16. In the process of producing an e-learning course in Sickle Cell Disease in collaboration with Australian Primary Health Care Nurses (APNA)
    • This course will be available to all primary health nurses who are members of APNA.
  17. Engaged with the Royal Australian College of General Practitioners to include newborn screening for sickle cell disease. “Newborn screening provides early diagnosis for children with sickle cell disease (SCD), reducing disease-related mortality” ( Ofelia 2019).
  18. SCD awareness presentation at different organisations like RMIT University and Ethnic Communities Council of Victoria

As we embark on this path again this year, we welcome all members and volunteers and non-members to me to join us at events and to provide suggestions and assistance to run further events that may appeal to ASCA.

Events planned for 2020

In the coming year, we have lined up a few events and we would like you to join us. These events plus others will enhance our community engagement and will assist us in upholding our objectives.

The plans include:

  • February, Support group meeting
  • March, we will be participating as volunteers in the run for the kids’ event supporting the Royal Children’s Hospital
  • April Good Friday ASCA event
  • May Africa day theme ASCA event
  • May, Support group meeting
  • June SCD awareness day event
  • July we will participate in the Run Melbourne event
  • August, Support group meeting
  • September SCD awareness month
  • October more community events
  • November ASCA SCD / Mental health event in partnership with other multicultural organisations
  • December end of year debrief and planning for 2021

Other Updates 

We have updated our constitution to use our own rules and the positions today will be our standard organisational positions until such a time that we decide to change again.

After one year of operating, we would like to review our Board of Directors and this will be done at the next Board Meeting in April 2020.

We have partnered with local organisations and international organisations to enhance SCD awareness

We have become members of local organisations and international organisations.

We are in the process of applying for our charity status which will make it easy for us to find sponsors who can support our work.

We do not get any State or Federal funding hence getting this status will enhance our work

Member interaction

We continue to interact with our members through continuous social media interactions and a newsletter update every two months. Our social media accounts include Facebook, Instagram, Twitter, and LinkedIn. We have over 6,500 followers across different social media platforms. We have 50 signed up members.

I would like to extend a warm invitation to all of you to join us, our membership is still free. We meet every last Sunday of the month.

Special thank you

I would like to thank the ASCA Board Members, Executive Members and Committee Members for their support and hard work during the past year. I would like to specifically mention and sincerely thank Dr. Marguerita Evans-Galea and Dr. Sarah Tregenza who have been helpful in directing us towards the right direction to achieve our optimum good during the last year. I really appreciate your help, guidance, and support across all our social media platforms. I would also like to thank all the other Board Members for your selfless acts to support ASCA.

I would also like to sincerely mention and thank Mr. Peter Leos, Mrs. Nathalie Kapuya and my husband Mr. Preston Nsofwa for your continued support and help in shaping our orgsanisation, from late nights doing newsletters, late nights and weekends preparing the SCD course, planning the support group meetings, these and more, thank you.

I also would like to give a special thanks to Ms. Mayase Jere who connected me to some of the wonderful people in this room and for your continued support during the year. I would also like to thank you for organising the venue for us today, very much appreciated. Lastly to all our ASCA Executive and Committee members, Luigi, Christinah, Anne, Kabaso, Joseph, Ade, Mercy, Tayo, Chileshe, and Vincent, thank you for your all year round support by attending our meetings and all the events, for your contribution during our numerous meetings and everything you do. I admire your enthusiasm and selfless acts, bearing in mind that we are all doing this on a volunteer basis. Thank you from the bottom of my heart.

Lastly, I thank you all for attending our AGM, we appreciate your support.

Please follow us on our different social media platforms and we would like to invite you in advance to our AGM next year.

Agnes Nsofwa RN, MN, BBA
Founder and Executive Director
Australian Sickle Cell Advocacy Inc

 

 

 

 

Australian Sickle Cell Advocacy – First Annual General Meeting

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 Medicine
  • Ms. Dina Pratt, Head of HR Mesoblast,
  • Dr. Charles Galea, Scientist, Data Scientist, Ford Motor Company,
  • Mr. Fred Alale, Chairman African Music and Cultural Festival,
  • Ms. Winitha Bonney, Motivational Speaker
  • Mr. Nicholas McLaren, Relationship Consultant at Victorian Chamber of Commerce and Industry,
  • Mr. Harry Battal, Group Manager at Mesoblast,
  • Mr. Eric Cua, Accountant at Hamilton Reid Chartered Accountants, our Board Members; and
  • the rest of the ASCA team, our general members and all other invited guests, friends and family.

 

We would like to thank our keynote speaker Dr. Rachel Cooke who had to stand in for Dr. David Hughes due to a hospital emergency.

We looked back at our first year of operation and the success we have achieved in such a short period. In 2019, we saw our initiative recognised as a not-for-profit organisation after having had a social media presence for over six years.

The initiative was formed to support people and their families as they navigate the Australian healthcare system. The founders of this organisation found a void in the lack of awareness of Sickle Cell Disease in Australia, having experienced firsthand the challenges of being affected by this disease.

Our objectives stand to continue raising awareness to the general public who may be at risk of carrying the sickle cell gene trait and to the healthcare professionals who may still find it difficult to understand this disease.

Still considered a rare disease in Australia, sickle cell disease is affecting an increasing number of people and to date we have about 750 people affected by this disease in Australia. This is just an approximate estimated figure, because, Australia, unfortunately, does not yet have a conclusive surveillance database.

During the past year, one of our main advocacy activities was an engagement with The Public Health and Preventive Medicine at Monash University who have been trying to capture data through the Haemoglobinopathy registry.

Australia unlike other countries like the UK, Scotland, Canada and other European countries is lagging in this area. Our hope is for this initiative to have funding so that it can meet its objectives of data collection and analysis which will, in turn, improve the services and lives of people affected by different haemoglobinopathies including sickle cell disease.

One other key engagement was with different clinicians from around the country, to advocate for the formation of the sickle cell disease treatment guidelines. We are very happy to report that on 13th November 2019, the process of forming these guidelines started and we were invited to present at this meeting. Standardised treatment guidelines for this disease will ensure that people living with sickle cell disease will receive consistent and appropriate treatment, care and diagnosis information. This was a win for ASCA as we are confident that when these guidelines are in place in all Australian hospitals, people living with sickle cell disease will benefit greatly.

Another important highlight was the collaboration with the Australian Primary Health Care Nurses (APNA), with whom we have partnered to formulate an e-learning sickle cell disease course for primary health nurses. This course will introduce sickle cell disease education, enhancing our awareness efforts aimed at Australian clinicians.

As we look forward to the new year, we ask for community support to ensure that our objectives are met. Providing support to people who are affected by this disease and increasing awareness to people at risk of carrying the sickle cell gene trait.

Our goals are for:

  • people to be proactive and have a simple blood test to find out if they have the sickle cell trait or sickle cell disease,
  • people to start talking about this disease more than ever before to break the barriers of the stigma attached to having this disease,
  • clinicians to fully understand what these community of patients go through and render the most appropriate treatment and referral services,
  • a positive outcome in our engagements with both the state department of health and the federal department of health in providing better services for people affected by this disease,
  • all communities in this country, no matter their background or language to have access to information about sickle cell disease which will help them make informed decisions,
  • other stakeholders understand the challenges faced by people affected with SCD and assist to alleviate these challenges.
  • all emerging clinicians to understand the impact this disease has on affected people

 

These and more causes are issues that #Team ASCA will continue to pursue. We encourage everyone to partner with us and fight this cause with us. See the president’s report attached here.

https://aussicklecelladvocacy.org/2020/01/23/asca-agm-2019-presidents-report/

 

 

Post ASCAT 2019 Report

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 one of the experts who attended the ASH program, this is part of the feedback they gave us  “We would like to express our sincere thanks to you for setting up these introductions and we look forward to productive outcomes from these relationships. We have also made contact with the SWAY group; we are hoping to contribute in the future to an international survey for patients and healthcare practitioners on effects of SCD which was presented at ASH” . This is the reason why we do this, to advance services for people living with SCD in Australia. We feel proud by this achievement.

See the detialed report here. 

ASCA Founder Agnes with ASCAT Founder Prof. Inusa Baba

 

 

Australian Sickle Cell Advocacy Official Ambassador

INTRODUCING THE NEWEST MEMBER OF THE ASCA FAMILY
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 as part of the Arthur Calwell Assisted migration policy.

For the full update see our media release here.

Full media release

See Hon Maria’s full letter to acknowlegde this postion here. 

We would like to we Hon Vamvakinou for accepting our invitation to advocate for our cause.