May was established by the World Health Organization (WHO) to raise public awareness about thalassemia. On this day, diverse events and activities are organized by numerous organizations across the globe to sensitize and encourage the exchange of ideas between the various stakeholders, comprising of policymakers, doctors, patients, and the general public about prevention and treatment of thalassemia and eventually finding a cure.
Objectives of World Thalassemia Day
The major objectives of World Thalassemia Day are to highlight the following specific areas:
- Importance of genetic counseling/testing for thalassemia before marriage
- Encourage the general public, especially the youth, to donate blood regularly
- Motivate healthcare professionals to take care of thalassemia patients
- Highlight the crucial role of vaccines, especially flu vaccines, for reducing the risk of infections in thalassemia patients
- Stress on the importance of a healthy diet and regular exercise for thalassemia patients
World Thalassemia Day 2019 ThemeThe theme for 2019 is 'Universal access to quality thalassemia healthcare services: building bridges with and for patients.'
This year, World Thalassemia Day will focus on ways to ensure quality universal healthcare for all thalassemia
patients across the globe, irrespective of where they may be located. Importantly, the day will commemorate and honor all thalassemia patients and their families who have never given up hope and strive every day to live life to the fullest, even in the face of great adversities. The day will also be dedicated to all those doctors and scientists who work tirelessly to develop new therapies for thalassemia so that the patients across the world can lead to a better quality of life.
Why is Thalassemia Awareness So Important?
Awareness about thalassemia is most urgent as the disease needs to be brought to the attention of key decision makers at the global level so that opportunities for unfortunate thalassemia patients can be increased.
Despite the huge progress made over the past few decades, still more needs to be done. Millions of thalassemia patients around the world are financially so weak that they cannot afford treatment. Therefore, there is an urgent need for improved access to quality, affordable, and safe healthcare services for thalassemia patients. This issue has been encapsulated in the United Nation's Sustainable Development Goals (SDGs), which advocates for Universal Health Coverage for all by 2030. The World Thalassemia Day provides a unique opportunity to make a massive call to action for easily accessible, affordable, equitable, and quality Universal Health Coverage for all thalassemia patients across the globe.
How is World Thalassemia Day Celebrated?
World Thalassemia Day is celebrated through various activities and events, organized in public places, schools, colleges, hospitals and medical institutions. Some of the activities are briefly highlighted below:
- Conferences & Symposia: These are ideal platforms for communicating the latest developments in the thalassemia field among medical professionals and scientists
- Photography & Videography Competitions: The Thalassemia International Federation (TIF) organizes photography and video-making competitions every year on World Thalassemia Day, which helps to highlight the importance of the disease and generate awareness among both the participants and viewers
- Thalassemia Day Walks: Walks can be organized on World Thalassemia Day to generate awareness, as well as raise funds from sponsorships
- Art Exhibitions: Exhibitions showcasing paintings and drawings by thalassemia patients would reveal their hidden talents to the public as well as motivate other patients suffering from the disease
- Street Plays: These are very effective ways of communicating to lay people about the dangers of thalassemia
- Thalassemia Screening Camps: Organizing free thalassemia screening camps will not only raise awareness but also motivate people to get tested
- Blood Donation Camps: Voluntary blood donation camps could be organized in the locality to encourage people to donate blood regularly
- Thalassemia Counseling: Free counseling sessions could be held in clinics and hospitals to educate thalassemia patients and their families on how to manage and cope with the disease
- Real Life Stories: Real life stories would provide a human face to the trials and tribulations faced by thalassemia patients day in, day out
- Wearing Zebra Attire: Thalassemia awareness is depicted by the zebra. So, wearing zebra awareness ribbons, lapel pins, T-shirts and other attire will not only show support for people with thalassemia, but also raise money from the sales towards improving their lives
Thalassemia: Facts & Figures
- 280 million people suffer from thalassemia worldwide
- 439,000 people suffer from severe forms of thalassemia
- 16,800 deaths from thalassemia occurred in 2015, down from 36,000 in 1990
- 3.4 percent of Indians are thalassemia carriers
- 7,000-10,000 children are born with thalassemia annually in India
- 3 in 100 people in India are thalassemia minor
- Thalassemia minor incidence in India is highest (7%) in the Sindhi population, which originated from the Sindh province in Pakistan
- When both parents are thalassemia carriers, there is a 25 percent chance that the child will either be normal or have thalassemia and a 50 percent chance that the child will be a carrier
- There is no cure for thalassemia unless a bone marrow transplant is carried out
Indian Initiatives for Tackling Thalassemia
Some of the major initiatives taken by the Government of India and Non-governmental Organizations (NGOs) are briefly highlighted below:
- Rashtriya Bal Swasthya Karyakrama (RBSK): This is a Government of India initiative under the National Health Mission. Its objective is to provide early diagnosis and treatment to children suffering from genetic disorders, including thalassemia
- Thalassemia Screening: Many government health centers provide facilities for premarital thalassemia screening and counseling
- Blood Transfusion: The National Blood Transfusion Council under the National AIDS Control Organization (NACO) has issued directives to provide blood free of cost to thalassemia patients
- Human Rights Legislation: The Ministry of Law and Justice, Government of India has included disabilities arising from thalassemia under the 'Rights of Persons with Disabilities Act, 2016', which was passed by the Indian Parliament on 28th December 2016
- Thalassemics India: This is an NGO, established in 1986 and constituted of thalassemics, thalassemia parents, doctors, associations, and social workers. It runs various projects, including 'Helping Hands', 'Spreading Smiles', and 'Pahunch'. It also has a Bone Marrow Transplant Program and regularly organizes Sunday Clinics for thalassemia patients
So, on World Thalassemia Day, let us salute those brave patients and their families across the world who struggle daily to cope with the hardships associated with the disease, but despite all odds, always emerge victoriously. References :
- International Thalassemia Day - Thalassemia International Federation - (https://thalassaemia.org.cy/news-events/international-thalassaemia-day/)
- World Thalassemia Day - Ministry of Health, Kingdom of Saudi Arabia - (https://www.moh.gov.sa/en/HealthAwareness/healthDay/2019/Pages/HealthDay-2019-05-08.aspx)
- International Thalassemia Day - Ministry of Health & Family Welfare, Government of India - (https://www.nhp.gov.in/international-thalassaemia-day_pg)
- Healthy Living with Thalassemia - Centers for Disease Control and Prevention (CDC), Atlanta, USA - (https://www.cdc.gov/ncbddd/thalassemia/living.html)
- International Thalassemia Day - UK Thalassemia Society (UKTS), London, UK - (https://www.ukts.org/)
- Thalassemics India - (https://www.thalassemicsindia.org/index.php)