Australian Sickle Cell Advocacy Inc November 2020 Newsletter
Supporting people affected by Sickle Cell Disease in Australia
Message from ASCA Director - Agnes Nsofwa
We are back with another issue of Team-ASCA update for the months September and October 2020. The year is almost coming to end and as we continue to experience a pandemic affecting the rest of the world, for us it has also turned out to be one of the busiest years. Firstly, a quick update that we are finally coming out of strict covid-19 lockdown restrictions due in Melbourne Victoria. However, it will not be until next year for us to know when our work in the community will go back to normal.
For now, we will continue doing our sickle cell awareness programs virtually. During this issue, we will report about an important month in the sickle cell year, September, the sickle cell awareness month. Even though this cause is not officially recognised in Australia, we joined other parts of the world observing this month. We spent the whole month of September going back to our June 19th Theme of reminding people to get tested for Sickle Cell Trait.
During this period, we have also continued advertising our inaugural conference scheduled for 18th September 2021. As a result of this, we have launched a fund-raising initiative and we would like your support to raise funds to make it possible for us to continue with our initiatives as well us make the conference possible. Please donate through our website to support those living with sickle cell disease in Australia. During this period, we also participated in the ASCAT conference, where we participated in the patient sessions again. Finally we would like to take this opportunity to thank Novartis for supporting our work last year and this year. Novartis has also sponsored us with the Covid Fund which we have used to purchase covid19 emergency kits among other uses. See our issue here in detail.
SICKLE CELL AWARENESS MONTH
September is considered a sickle cell awareness month in the US and other parts of the world. Even though this is not officially recognised here in Australia, we joined the rest of the world to observe this cause. To continue with our theme of know your sickle cell status that we started on June 19th, we created different flyers depicting different ethnicities getting a blood test.
This theme was picked as result of the suggestion by the World Health Organisation which has stated that the burden of sickle cell disease can be reduced through prevention programs. Our hope is for people to get tested and after knowing your sickle cell status, make an informed decision. So as we continue with the rest of 2020, we say it's not too late, please see your GP and ask for this test. Do it for your next generation. During this period, we were again privileged to receive a message from Greg Hunt MPthe Federal Minister for Health. Hon Hunt is the first Minister in history as far as we are aware, to specifically acknowledge people affected by this condition in Australia. See the video here.
SICKLE CELL AWARENESS MONTH SUPPORT FROM OTHER POLICY MAKERS
To increase our awareness efforts, we re-played a few video that we highlighted on June 19th The World Sickle Cell Awareness Day. We played videos from Hon Maria Vamvakinou, Hon Peter Khalil, Hon Tim Read, Mr Mike Amor and the one from our Board Chairperson Dr Marguerite Evans-Galea AM. See the messages from these videos here.
Video by Hon Maria Vamvakinou is here Video by Hon Peter Khalil ishere Video by Hon Tim Read ishere Video by Mr Mike Amor ishere Video by Dr Marguerite Evans-Galea AM ishere
RED CELL EXCHANGE TREATMENT FINALLY IN PERTH WESTERN AUSTRALIA
We are so thrilled to report that after almost two years of advocating, people living with Sickle Cell Disease in Western Australia will now be able to benefit from getting the Red Blood Cell Exchange Treatment Option. Now people might be surprised to learn that this treatment option has not been available for SCD patients in this part of Australia.
Well, finally, through several inquiries from doctors in Perth and other parts of the country, we are thrilled to announce that on 28th October, 2020, as far as we know, the first SCD patient started their treatment. They will continue with this treatment every four weeks. This has only been possible with the help from leading Haematologists and all the nursing staff from Sir Charles Gairdner Hospital (SCGH) Perth. See full update here.
ASCA 1300 NUMBER
We are happy to report that we have a national 1300 number. This has been made possible by the sponsorship of Novartis. This number is connected to our State representatives who will be able to help you with any inquiries. Options include:
1 - Customer Service
2- Victoria
3- New South Wales
4- Queensland
5 - Western Australia
6 - South Australia
WOMEN'S WELLNESS: A UNITED SCD VIRTUAL CONFERENCE
We have partnered with Maryland Sickle Cell Disease Association to bring a conference focusing on women affected by Sickle Cell Disease. The aim of this conference is to Build a global community of women affected by sickle cell disease to promote total wellness. This conference has a focus on women's spiritually, mental health, physical health and even financial coaching.Part one of this conference was recorded on Saturday 14th November 2020 which focused on spirituality & healing and women's health including reproductive health.
We are back with part 2 recording on Saturday 21st November 2020 at 1pm Melbourne Australian Time. In Part 2 we will look at the importance of caregivers and warriors guarding their mental health. When do you "heal" mentally while dealing with Sickle Cell Disease. We also get a presentation on Financial Coaching. The conference will be launched on at 12:12pm on 12/12/2020 on our respective websites / social media accounts.
1. Ask your GP for an electrophoresis blood test for Sickle Cell Trait
2. Get a photo of you getting the blood test (In Australia, this test is free for residents).
3. Post the photo on social media and Tag Australian Sickle cell Advocacy & #Tested4SickleCell
4. Invite / tag your friends to get tested too.
*Don't be caught off or don't let our children be caught off.* You can only know your sickle cell status if you get tested.
ASCA SICKLE CELL DISEASE E-LEARNING COURSE
The Sickle Cell Course designed by ASCA is finally on our website. As reported on June 19th the World Sickle Cell Awareness Day, we were sourcing funds to have the course available at a cheaper price. The course was designed to raise awareness in the Australian Healthcare System.
The course was designed with input from our Haematologists on the Board, Nurse Educator from RMIT, Patients and Caregivers who are also professionals ( Education, Nursing, IT).
At the moment, you can't get the CPD points once you complete this course, however, you do get a certificate of completion. We are in the process of applying to the RACGP and Australian College of Nursing to make it possible for you to get one CPD point on completion. However, this is a lengthy process and we are working on it.
Please see the link to the course. Please help us maintain the course by contributing a $10 for us to maintain the website hosting charges. Once you finish the course, we will send you a survey to give us feedback on the course. FOLLOW THE LINK HERETO ACCESS THE COURSE
SICKLE CELL DISEASE IN SCHOOLS, UNIVERSITY AND EMPLOYMENT
In line with increasing sickle cell awareness, we have consulted with Prof Simon Dyson from the De Montfort University in Leicester city UK to have free lectures on Sickle Cell Disease in Schools, University and Employment. See these audio lectures for free on this link below. If you have any questions, please do not hesitate to contact us. To access these lectures, FOLLOW LINK HERE.
ASCA VIRTUAL FUNDRAISING EVENT
As we plan our conference scheduled for 18th September 2021, we have started a fund-raising initiative to raise funds for this event. Visit our website to do virtual keep fit events and help raise funds to help thise affected by sickle cell disease. See the fund raising website here
Pick an activity:
→ Zumba Yoga Virtual Walk or in your neighbourhood.
→ Set a fund-raising goal form a Team with friends and Family.
Australian Sickle Cell Advocacy (ASCA) will host the First-Ever Sickle Cell Disease Conference in Australia. We are excited to announce that this full day combined conference with a Parallel Caregiver / Patient session will be held on 18th September 2021.This conference will be in conjunction with The Blood 2021 Meetings which will be help from 19th September 2021 to 21st September 2021 at The Adelaide Convention Centre
The much awaited ASCA emergency covid-19 kits are finally here. Due to the pandemic, the supplies took a while to arrive, some of which were purchased overseas. These kits have now been posted to our State representative who will pass them to different treating Haematology clinics or Haematologists. Please get in touch with your local treating doctors to have one given to you. Alternatively, please call us on 1300 148 824 to be connected to your State representative. Note: These kits are for Australian families affected by Sickle Cell Disease only.
FUNDING TO AUSTRALIAN SICKLE CELL ADVOCACY INC
THANKS TO NOVARTIS
ASCA would like to thank Novartis for sponsoring our work for the second year in a row. Last year, Novartis sponsored our first-ever Patient Support Networks. With that funding we managed to hold 3 face to face support meetings and one virtual meeting with one being planned before the end of the year. This year, Novartis granted us a covid fund. Furthermore, Novartis gave us a grant to conduct our education sessions. We would like to thank you Novartis for all the support rendered to our organisation.
FUNDING FROM VICTORIA STATE GOVERNMENT - THANK YOU
ASCA would also like to take this opportunity to thank the office of the Minister for Multicultural Affairs for the successful grant offered to us. This grant process was very competitive and after several attempts to apply for grants from The State Government, we are thrilled to have been given this grant. We intend to translate our educational resources among other things plans to raise awareness in the multicultural community.
THANK YOU PAYPAL EMPLOYEE GIVING
We received a surprise gift in the mail from PayPal giving fund supporting our work. We would like to thank all the employees who contributed towards this cause. Your contribution will go a long way to supporting our projects. Thank You for your support.
ASCA MENTAL HEALTH AWARENESS
Mental Health is as an important part of disease management as that of physical health. The last few weeks, we have been meeting with Haematologists across the county to understand whether the mental health management is included in the patient's care plans. What we have found out is that different treating haematologist 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 the lack of participation from the patients point of view and so as an organisation we will ensure that we continue having these discussions with our members to point our that it is ok not be ok. And that there is help available if you feel low. Hence we have developed brochure to raise awareness about dealing with mental health and identifying the signs when to seek help. We have also identified those signs and symptoms and what support can be offered from the healthcare system, the clinicians and from us as an organisation. See these links to view our brochures which will be in all sickle cell treatments centres near you very soon. Thank you to all the doctors who took time to meet with us. We still have three more states to have these discussions. The above zoom session was part of the mental health awareness talks in sickle cell disease. See the full video here.
RUOK DAY MENTAL HEALTH TALKS
In line with emphasising the need to guard our mental health, on 10th September 2020, the RUOK Day, we held an informative session to further raise awareness on identifying these signs and symptoms needed to seek mental health support. We partnered with Salome Mbenjele from Moonlight Health and Wellbeing Services who conducted a presentation for us.
LAUNCH - AUSTRALIAN SICKLE CELL ADVOCACY INC SOUTH AUSTRALIAN CHAPTER
In September, Australian Sickle Cell Advocacy Inc South Australian Chapter was officially launched. ASCA-SA is an extension of ASCA representing people affected by sickle cell disease in South Australia. The event was officially opened by Hon Peter Khalil Federal Member of Wills in Victoria and official ASCA Ambassador. South Australian Haematologist Dr Manika Pal also gave a presentation to highlight SCD in South Australia. The SCD cases in South Australia have increased in recent years and hence the need to have a representation by this organisation. There is also need to raise awareness in all multicultural groups and providing information in different languages. ASCA is working on translating a number of resources to ensure that other non - English speaking communities can get this information. We welcome ASCA-SA to TeamASCA. See the official launch here.
Scientific Conference on SCD & Thalassaemia Patient Session
This year we were are excited to participate in The Annual Scientific Conference on Sickle Cell and Thalassaemia (ASCAT). This conference was in collaboration withEuropean Hematology Association andBritish Society for Haematology. We specifically participated in the Patient Sessions. Great conversations involving the input of people living with sickle cell disease to drive research and other issues being faced by this community. We would like to thank the organisers of this conference for the invitation.
ASCAT POSTER PRESENTATION
Another way we participated at the ASCAT 2020 conference was by presenting a poster in Public Health and Education. Our title was Sickle Cell Disease Awareness in Australian Nurses. We picked this topic to highlight the Sickle Cell Disease E-Learning course we designed to help with raising awareness about this disease in the Australian Healthcare system. Over the past few years, people affected by SCD have always reported that at some point they have to explain what this disease is. Hence as an organisation, we designed this course to make it easy for Australian Healthcare professionals unaware about this disease to be familiar with this condition. The course is an hour long covering major topics to understand this disease. See our virtual presentation here.
Visit our website and please support our work and see course here: https://lnkd.in/gjnECUN
SCD TALKS WITH AGNES
The sickle cell disease awareness talks presented by Agnes ASCA CEO continues during this pandemic. One of the talks presented during this period was that with Professor Yukata Niihara, the CEO of Emmaus Life Sciences, the manufacturers of L Glutamine, (Endari). Prof Niihara did a presentation showing how Endari works. Prof Niihara also answered a lot of questions including the big question about access to the Endari drug. We discussed with Prof Niihara why it's important to have alternatives for treatment of Sickle Cell Disease. We look forward to the near future to see the outcomes of the plans to have this drug in Australia, different African countries and India. We would like to thank Gautam Dongre from India for joining who gave an Indian perspective.
ASCA would like to congratulate Agnes Nsofwa, the Founder and Executive Director for being recognised with the international platform connecting healthcare with the experience, skills and insights of Patient Leaders. It's the world’s largest network of over 100k Patient Leaders, working across virtually all health conditions and topics. This year's event attracted over 15000 nominations, 130,000 endorsements, 96 finalist and 16 winners. See the WEGO Health award ceremony here.
AMPLIFY SCD VOICES TEN +2 SERIES
As an extension of the SCD Talks With Agnes, Amplify SCD Voices Ten +2 Part Series has been underway since 29th August 2020. This initiative will run until 9th January 2021. In this initiative, Australian Sickle Cell Advocacy Inc brought together over 40 sickle cell stakeholders from over 23 countries with the majority coming from African countries, where this disease is very prevalent. The aim of this initiative is to continue raising awareness even during this pandemic. We opened our platform expecting nothing in return and simply increasing the sickle cell awareness that unfortunately is still needed around the world. This initiative is simply to bring different people to form a Network discussing the same issue affecting millions of people around the world. This Network is NOT AN INTERNATIONAL ORGANISATION, it's a group of people with common goals wanting better services for people affected by Sickle Cell Disease. To be involved or join this network, use this link to take you to the closed
Facebook group. Contact us today.
You can register to attend these webinars here:
https://zoom.us/webinar/register/WN_fQU3Wy50S62ltbJ2Nmx_MA
Zoom ID: 936 0258 5883
Password: 850 149
We have expanded and we are now in all major states in Australia including WA, NSW, VIC, SA and QLD. We also have representatives in NT and ACT. Hence we would like you to come on board and join us. Are you affected by Sickle Cell Disease or are you someone just passionate about making a difference, contact us to be part of a group of people trying to make a difference in the lives of people living with sickle cell disease in Australia. Note: This is for those living in Australia only. Thank you.
Contact us on 1300 148 824.
300,000 babies are born with severe forms of sickle cell disease annually Experts estimate that by 2050, over 14 million babies will be born with SCD.
Sickle Cell Disease (SCD) is the most common inherited blood disorder in the world Over 250 million people worldwide have the sickle cell trait with the majority unaware
Australian Sickle Cell Advocacy Inc, is the leading organisation in Australia raising awareness about Sickle Cell Disease (SCD) and encouraging Australians to get tested for the sickle cell trait to protect the next generation. Experts predict that there are about 1000 people living with SCD in Australia. So get involved today. Contact us to be connected to other families affected by SCD.
This year we were unable to do our traditional run for the kids event due to the covid-19 pandemic. We are back next year. Contact TeamASCA to join our team.
