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/

 

 

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)

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.

ASCA POSTER PRESENTATION FOR ASCAT