TASCA Newsletter (Spring 2021)

The latest TASCA newsletter is out now. 

Contents:

  • COVID-19 Vaccination Information 
  • AGM Oct 28
  • Committee and Staff Updates
  • TASCA Small Grants Program
  • TIF e-Academy
  • Research into Beta Thalassaemia
  • Hepatitis C Vaccination?
  • R U OK? Day
  • TASCA Supporters
  • “IRON BOY” by Arthur Bozikas
  • 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.

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.

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

TASCA Newsletter (Autumn 2021)

The latest TASCA newsletter is out now. Have a read and get updated on all of TASCA’s activities and advocacy work! 

Contents:

  • 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.

TASCA Supports Rare Disease Day 2021

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

Bluebird Bio Announces Temporary Suspension on clinical trials of LentiGlobin Gene Therapy for Sickle Cell Disease

Bluebird Bio, developer of gene therapy Zynteglo, has suspended their clinical study of the treatment on sickle cell patients after adverse events were reported. Two patients developed Acute Myeloid Leukemia (AML), a type of blood and bone marrow cancer, after being treated with Zynteglo five years ago.

A patient was reported last week developing Myelodysplastic Syndrome (MDS), a blood cell production disorder, This follows a case of MDS in 2018 that was attributed to the chemotherapy received in preparation for gene therapy.

It is currently unknown as to whether the development of AML was caused by the viral vector used in the therapy. Further investigations are underway.

No cases of hematologic malignancy such as AML or MDS has been reported in the use of Zynteglo for β-thalassaemia so far. However, the marketing of Zynteglo in Europe has been suspended as a precautionary measure.

Zynteglo, previously known as Lentiglobin, is a gene therapy developed by US Biotechnology company Bluebird Bio for the treatment of sickle cell disease and transfusion-dependent β-thalassaemia. The therapy uses a viral vector to deliver genetic changes to patients with the hope of improving haemoglobin and red blood cell production.

European Medicines Agency Accepts GBT’s Marketing Authorization Application (MAA) for Oxbryta® (voxelotor) for the Treatment of Hemolytic Anemia in Sickle Cell Disease

Global Blood Therapeutics, Inc. (GBT)  announced that the European Medicines Agency (EMA) has completed the validation of GBT’s Marketing Authorization Application (MAA) for Oxbryta (voxelotor) tablets and started its standard review process.

A first-in-class oral, once-daily therapy, Oxbryta directly inhibits haemoglobin polymerization, the root cause of the sickling and destruction of red blood cells in SCD. The sickling process causes hemolytic anaemia (low haemoglobin due to red blood cell destruction) and blockages in capillaries and small blood vessels, which impede the flow of blood and oxygen throughout the body. The diminished oxygen delivery to tissues and organs can lead to life-threatening complications, including stroke and irreversible organ damage.

“Sickle cell disease has a devastating impact on the lives of patients and their families, including serious and life-threatening complications that can lead to organ damage and early death,” said Ted W. Love, M.D., president and chief executive officer of GBT. “Despite this overwhelming need, there are currently no approved therapies in Europe that have the potential to modify the course of the disease. We look forward to working with the EMA to meet our goal of bringing the first treatment for hemolytic anaemia in sickle cell disease to European patients as soon as possible.”

The marketing authorisation application is based on data from the Phase III HOPE study and the Phase II HOPE-KIDS 1 study, both of which enrolled patients at clinical sites in Europe. The HOPE study achieved its primary endpoint.

The analysis of the complete data from the HOPE study further demonstrated that Oxbryta, at a daily dose of 1,500mg, resulted in durable improvements in haemoglobin levels and markers of haemolysis over 72 weeks of treatment.

Oxbryta has already been approved in the US for the treatment of SCD in adults and children 12 years of age and older.

Read the Full GBT Press Release HERE

TASCA Newsletter (Summer 2020)

The latest TASCA newsletter is out now. Have a read and get updated on all of TASCA’s activities and advocacy work! 

Contents:

  • Chair’s address
  • TASCA 2020 AGM
  • Christmas Activities and Self Care
  • Thalia App
  • Patient Pathway Program
  • Interview with Donna, Social Worker
  • TASCA Store Launch
  • Around Australia
  • TASCA 4 Kids 

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

You can also download a PDF here.

View previous newsletters here.

TASCA’s Elves at Work!

TASCA has been hard at work in Melbourne’s treatment centres to make them extra festive for the holidays!

Thank you to the team at Royal Melbourne Hospital (5 West Day Medical Centre) and Monash Health (Medical Infusion Unit) for letting our elves bring a little Christmas cheer to your space!

Be sure to take a photo when you are in for treatment and take a candy cane from the TASCA Christmas Tree!