NICOSIA, May 5, 2021/Thalassaemia International Federation (TIF)
MARKING International Thalassaemia Day on 8 May, the Thalassaemia International Federation (TIF) gives voice to countless individuals with thalassaemia all over the world who continue to encounter pronounced challenges in terms of access even to basic health, social and other care, necessary for their survival and well-being.
International Thalassaemia Day is devoted to raising awareness amongst the general public and decision-makers about thalassaemia, and helping the global thalassaemia community connect and call for changes towards the improvement of lives of patients with this inherited, debilitating blood disorder.
The 2021 theme ‘Addressing Health Inequalities Across the Global Thalassaemia Community’ was carefully selected to spotlight the many and multifaceted unmet needs of patients with thalassaemia which, coupled with the tragic COVID-19 pandemic consequences, have further exacerbated health inequalities that afflict the global thalassaemia community.
Indeed, published evidence and TIF-collected data suggest that in most countries where thalassaemia exists, patients with β-thalassaemia do not reach or surpass the age of 20 years old, while less than 20% of patients with the disease globally receive appropriate and timely blood transfusions and iron chelation therapy.
”Albeit impressive scientific advances in the prevention and management of thalassaemia, leading to improved survival and quality of life of patients, the majority of individuals with the disease, residing mainly in low- and middle-income countries of the world, still face an increased risk of morbidity and mortality at a young age, due to the suboptimal care they receive. Today we call for the intensification of concerted efforts and collective mobilization by all related stakeholders to change that”, said Dr Androulla Eleftheriou, TIF Executive Director.
”The International Thalassaemia Day is a vivid reminder of all the people we have lost along the way towards better prevention and management of the disease, and an opportunity to renew our promise to keep fighting for the benefit of our community, until a final cure for thalassaemia is accessible to every patient”, added Mr Panos Englezos, TIF President.
In celebration of the International Thalassaemia Day (ITD) 2021 and seeking to highlight the importance of thalassaemia as a worldwide, major public health issue, TIF has prepared a wealth of online activities, which include a massive global campaign featuring various awareness and communication resources, the ITD 2021 Official Video and an online photo exhibition.
In addition, TIF will host a Virtual High-level Event for the official premiere of the ‘Global Thalassaemia Review’, a particularly ambitious work of the Federation, fruit of its official collaboration with the World Health Organisation (WHO), developed with the objective to document and assess the existing services for patients with thalassaemia all over the world.
The event will open a welcome address by WHO Director-General, Dr. Tedros Adhanom Ghebreyesus, whilst high-ranking representatives of international patient organizations, prominent academics and many other internationally renowned figures operating in the haemoglobinopathies field, will also actively participate.
‘‘Eliminating health inequalities, so that patients with thalassaemia receive the same quality of care wherever they may live and enjoy a full social and professional life is our collective responsibility.”
Navigating work with chronic illness is tricky! Get to know your rights as Gabrielle Marchetti from Jobwatch walks us through the common questions chronic illness sufferers have on this issue. If you have any questions for Gabrielle, she would love to answer them! Send them through to firstname.lastname@example.org. This video was recorded as part of TASCA’s Mindfulness and Wellbeing Program.
The latest TASCA newsletter is out now. Have a read and get updated on all of TASCA’s activities and advocacy work!
- Our New Ambassador
- Committee Updates
- TIF Conference
- Rare Disease Day
- Lucas Garage Sale
- Decathlon BBQ
- International Women’s Day
- TASCA’s Christmas Wrap Up
- TASCA 4 Kids Page
Want a physical copy? Let us know by sending a request through email.
You can also download a PDF here.
View previous newsletters here.
Infographic from Thalassaemia International Federation on the characteristics, eligibility criteria, and potential risks of current and emerging cures.
Visit the TIF website for more resources like this.
Win an Easter Basket!
Happy Easter everyone!
Couples’ decision-making when considering preimplantation genetic testing (PGT) because of a hereditary condition
Researchers at the University of New South Wales are recruiting participants to consider a research study titled “Couples’ decision-making when considering preimplantation genetic testing (PGT) because of a hereditary condition”. Preimplantation genetic diagnosis (PGD) is a reproductive technique used to test embryos to determine whether they are affected by a particular genetic condition. It is also known as “Preimplantation Genetic Testing for monogenic/single gene defects” or “PGT-M”.
This research study aims to investigate couples’ decision-making towards using PGT-M by using an online survey.
You and your partner are eligible to participate in this study if you and your partner are at risk of having a child affected by a genetic condition and are either considering using PGT-M or have already undergone PGT-M.
Participation in the study would involve completing an online questionnaire, which will take about 15 minutes. If you have a partner, and your partner is also interested in participating in our study, please forward this email to your partner. The Participant Information is included in the link below, which provides more details about this study and describes what participation will involve. The first 200 individuals who complete the questionnaire will be provided with a $30 Coles gift card to reimburse their time. Participation in this research is voluntary. Your decision regarding whether to take part will not affect your relationship with your doctor and UNSW.
Though both you and your partner are encouraged to take part in our study, only one individual’s participation is also welcome. If you are interested in participating in this study, please click on the link relating to the appropriate questionnaire version below.
If your partner is interested in participating. We ask that your partner click on the link to the appropriate version below or copy and paste the URL into an internet browser:
If you or your partner have any questions, please contact the Research Coordinator, Ms Lin Cheng at UNSW (email: email@example.com or call 1800 814 403 for free).
You can also contact the Coordinating Principal Investigator Professor Bettina Meiser via email address: firstname.lastname@example.org or call 9385 0025.
What is a rare disease?
- The most widely accepted definition is that a rare disease is one that affects less than five in 10,000 people.
- It is prominently cited that there are more than 7,000 different rare diseases.
- While individual diseases may be rare, the total number of Australians living with a rare disease is not. Approximately eight per cent of Australians live with a rare disease. Extrapolated to an Australian population of over 25 million people, this equates to around two million Australians.
- Approximately 80 per cent of rare diseases are of genetic origin.
- While there is large variation among rare diseases, people living with a rare disease face common challenges including timely and accurate diagnosis, limited care and support options and lack of research.
National Strategic Action Plan for Rare Diseases
In February 2020, Australia’s Minister for Health launched the National Strategic Action Plan for Rare Diseases (the Action Plan), ahead of Rare Disease Day. Rare Voices Australia (RVA) led the collaborative development of the Action Plan, which involved extensive stakeholder consultation with all key stakeholders in the rare disease sector.
The Action Plan has three interrelated Pillars with Priorities, Actions and Implementation areas that work towards the best possible outcomes for Australians living with a rare disease.
The three Pillars are:
1. Awareness and Education
2. Care and Support
3. Research and Data
‘Developed by the rare disease sector, for the rare disease sector,’ the Action Plan can drive and future-proof much needed reform.
Rare Disease Day
First launched in 2008 by EURORDIS – Rare Diseases Europe, Rare Disease Day 2021 (28 February) will mark the thirteenth time that rare diseases have been recognised globally. It will be the twelfth year the event will be commemorated in Australia.
The main objective of Rare Disease Day is to raise awareness among the general public and decisionmakers about rare diseases and their impact on people’s lives. In 2020, thousands of events were organised in over 100 countries and regions to mark the day. The rare disease community united across borders to show that Rare is many. Rare is strong. Rare is proud! In Australia, a number of events were held including the Action Plan launch at Parliament House in Canberra, the Rare Together Expo in Perth, Rare Star Day, the Rare Disease Day Fun Run and Walk in Cairns and more. A number of buildings around the country were also lit up to mark the day.
Source: Rare Voices Australia
Are you looking to study in Australia?
Australia can be a great place to live and study. However, for international students, navigating a new health system and making sure you have access to treatment during your stay can be tricky.
Below are some of the questions we receive frequently from students just like you!
Where is treatment available and how does it work?
There are treatment centres for thalassaemia in all major cities in Australia. Transfusions and thalassaemia treatment is readily available in these hospitals and while other hospitals might not have the same level of thalassaemia expertise, they would still be able to provide transfusions.
To arrange treatment, contact the hospital directly.
For a list of all the main treatment centres visit our website: https://www.tasca.org.au/treatment-centres/
How do I access general health care in Australia?
The Australian health care system has two major types of health care, Primary Health Care and Secondary Health Care.
Primary health is the first port usually the first contact in access health care. This is usually through a General Practitioner. Through primary health providers, you will be able to be referred to specialists and Secondary Health Care such as hospitals.
For more information on Australia’s Health System have a read of this Australian Institute of Health and Welfare Publication.
What are the costs of treatment?
If you don’t do not have permanent resident status or specific visa statuses in Australia, you will have to pay the full fee for treatment and medication.
Costs per hospital visit can vary depending on the situation and hospital. A rough guide for a standard visit for a transfusion is around $1500AUD (excluding additional tests and scans required).
Can I take out an insurance plan to cover the cost of treatment?
International students are required to obtain OSHC (Overseas student health cover), which can cover costs relating to treatment.
However, the treatment of a chronic, pre-existing condition such as thalassaemia will be subjected to a 12-month waiting period.
During that waiting period, access to healthcare listed under the Medical Benefits Scheme and unrelated to pre-existing conditions will be covered.
A list of insurers and more tips can be found here on the Aushealth Hospital website.
Contact your insurer before seeking treatment to confirm and exclusions and what out of pocket costs you should expect.
Can I become a member of Thalassaemia and Sickle Cell Australia while I am here?
Yes! We welcome all students and new residents to join our family. You will have access to our events and programs as well as be informed of new updates. Becoming a member will also help us advocate on your behalf should you need it.
What if I have more questions?
We are here to help! Send your questions through our contact form and we will be in touch!