World Hepatitis Day 2021- Hep Can’t Wait!

World Hepatitis Day held on 28 July is an opportunity to step up national and international efforts on hepatitis.

Although preventative measures such as donor and blood screening have increased blood safety and have virtually removed the risk of transfusion-transmitted infections in Australia, chronic hepatitis remains a concern in the genetic haemoglobin disorder community in Australia due to past infection and internationally due to still inadequate blood safety measures.

This World Hepatitis Day, we support the global call to eliminate hepatitis especially for those with genetic haemoglobin disorders. 

Australia can’t wait to eliminate hepatitis!

Learn more at Australia’s World Hepatitis Day official website.

 

Hepatitis

Hepatitis B and hepatitis C are viruses that cause damage to your liver. They can be chronic, which means you could have them your whole life. Without treatment, they can lead to liver disease or liver cancer.

To see the latest statistics about hepatitis B and hepatitis C in Australia and why Australia can’t wait to eliminate hepatitis you can down load the World Hepatitis Day 2021 Factsheet using the button below.

Hepatitis B

In Australia, approximately 220,000 people are living with lifelong Hepatitis B and many are unaware they have the virus.

There is a safe and effective vaccine to protect you against getting hep B.

You can get treatment to manage chronic hepatitis B but not cure it.

Hepatitis C

In Australia, approximately 120,000 people are still living with chronic hepatitis C at the end of 2019 and many are unaware they have the virus or have not been fully diagnosed.

There is no vaccine to protect against hepatitis C, but there is an effective cure. The medicines known as direct-acting antivirals (or DAAs) are easy to take with as little as one tablet a day, no injections and most people experience few to no side effects.

Most people can get a prescription from their GP. They are low cost for people who have a Medicare Card.


Source: Hepatitis Australia

2021 Hepatitis Australia Factsheet

This document provides some useful statistics and information for World Hepatitis Day communications, including some new data not previously available in the public domain.

TASCA Newsletter (Winter 2021)

The latest TASCA newsletter is out now. 

Contents:

  • Light Up Australia
  • AGM Announcement
  • Raffle Winners
  • ITD2021
  • Thalassaemia International Federation Update
  • Who’s Inspiring Us?
  • A Tribute to Tim Vine 
  • What’s TASCA Been Up To?
  • TASCA 4 Kids Page

Want a hard copy? Let us know by sending a request through email.

You can also download a PDF here.

View previous newsletters here.

New TIF Resources: Thalassaemia Guidelines and COVID-19 Vaccination Guide

It’s Here: The 4th Edition of TIF Guidelines for The Management of TDT 

TIF, its Board of Directors and its International Scientific Advisory Board proudly present the 4th Edition of the Federation’s most prestigious and renowned publication, the TIF Guidelines for The Management of Transfusion- Dependent Thalassaemia (TDT).

Since 1999, when the very first edition was originally released as part of the Federation’s Educational Programme, the TIF Guidelines have been adopted and used extensively by academics, researchers and healthcare professionals all over the world as the only evidence-based reference text concerning the treatment of patients with TDT.

The newly launched edition includes brand new chapters on the recently approved modalities of patient treatment, the value of patient engagement at the decision-making level, the Reference Centres’ contribution to patient care, and much more.

We are confident that these Guidelines will offer once again valuable information to all allied physicians involved in the treatment of patients with this blood disorder and will consequently benefit the global thalassaemia community many times over. 

The June Update: TIF’s Guide on COVID-19 Vaccinations and Therapeutic Drugs 

As vaccination rates are slowing in the US and Europe, the spread of the Delta coronavirus variant causes growing concerns worldwide with health experts predicting the highly infectious strain to soon account for the majority of COVID-19 cases globally.

In our latest Guide on ‘COVID-19 Vaccinations and Therapeutic Drugs’, we have gathered the latest news, updates, and the information you need about: 

  • the current status of COVID-19 vaccinations in major countries and regions  
  • the clinical development and production of COVID-19 vaccines 
  • a breakdown of differences between the Pfizer, Moderna, AstraZeneca, and Johnson & Johnson COVID-19 vaccines 
  • the COVID-19 variants and the existing vaccines’ effectiveness 
  • the COVID-19 vaccines in Phase 3 clinical trials 

TASCA COMPETITION – 1 of 2 Sooshi Mango Double Passes to Win!

Con the Fruiterer and Acropolis Now combined and on steroids is the only way to describe this Australian comedy troupe made up of two brothers and a close friend, who have gained a massive following with their irreverent antics online and on stage.

We are giving you the chance to win a double pass to see “Sooshi Mango – OFF THE BOAT”, their brand new 2-hour live show on Sunday 29th August, 5:30 pm at the Rod Laver Arena.

If you are looking for a night out filled with belly-aching laughter (aren’t we all?), then send us your most creative and funniest impersonation of a cherished family member in the form of a 15 -30 second skit or musical routine. For inspiration check out: www.sooshimango.com

Share with us by uploading to www.tasca.org.au/sooshimango post to Facebook/Instagram with #TASCAComp

Entries close at 11:59pm, Thursday 29th July 2021.

Winners will be announced on Thursday 5th August 2021.

Terms and Conditions:

  1. All entrants must be TASCA members (membership is currently free, see our website for details).
  2. Winners must be available to attend the Sooshi Mango performance on Sunday 29th August, 5:30pm at the Rod laver Arena.
  3. All tickets for this competition are not redeemable or exchanged for cash.
  4. This event may be cancelled at short notice due to unforeseen circumstances, such as power failure, natural disaster, COVID- 19 restrictions.

Submit your video!

TASCA on Southern FM

Sam, TASCA’s Health Promotion Officer, sat down with Angela Randall from The Kiwanis Club of Moorabbin and Colin Tyrus from 88.3 Southern FM to chat about genetic haemoglobin disorders and TASCA’s relationship with the Kiwanians on awareness raising and the “Big Green Shed”.

Listen to programs like The Community Block with Colin Tyrus and more on 88.3FM or online.

Recorded on Tuesday 18 May 2021.

World Sickle Cell Day Light Up

In recognition of World Sickle Cell Day on 19th June, Thalassaemia and Sickle Cell Australia has organised the 2nd annual light up of landmarks in Australia. 

 

Share your photo with #LightUpForSickleCell to raise awareness!

 

This year, the following buildings will light up:

 
June 17th
  • Trafalgar Bridge and Perth Council House, WA 
June 18th
  • Bolte Bridge, VIC
June 19th
  • Telstra Tower, ACT
  • Embassy of Greece in Canberra, ACT
  • The Bell Tower, Perth, WA 
  • Palmerston Water Tower and Frances Drive Light Pole, Palmerston NT 
  • Monash Park Tree and Mooroopna Water Towers, VIC
  • Launceston Town Hall,  TAS
  • Adelaide Town Hall Balcony, SA 
  • Story Bridge, Victoria Bridge and the Reddacliff Place sculptures, QLD 
  • Kurilpa Bridge, QLD 
  • Newcastle Clock Tower, NSW
 We want to thank all our light up partners that made this possible! 
  • Adelaide City Council
  • Brisbane City Council
  • City of Launceston
  • City of Newcastle
  • City of Palmerston
  • Embassy of Greece in Canberra
  • Greater Shepparton City Council
  • Telstra
  • The Bell Tower
  • Transurban
  • Queensland Department of Energy and Public Works

Team Lucas – 31 Donors in 31 Days

Ella, one of our awesome members, is doing something amazing this May.

She will be holding a blood drive for her son, Lucas’, birthday. (The same Lucas doing awesome things with his bike ride for Make-A-Wish foundation).

If Ella gets 31 donors in the 31 days of May, she will shave her head!

Make it happen by joining the Australian Red Cross Lifeblood team “Team Lucas – 31 Donors in 31 Days” when making an appointment or by speaking to the nursing team on arrival for a donation.

Share this with all your friends to make this happen!

Great work Ella and Lucas!

International Thalassaemia Day 2021

NICOSIAMay 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.”

Employment Rights living with Chronic Illness – Gabrielle Marchetti

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 hpo@tasca.org.au. This video was recorded as part of TASCA’s Mindfulness and Wellbeing Program.