IMPACT OF COVID-19 PANDEMIC ON BLOOD TRANSFUSION DEPENDENT THALASSEMIA PATIENTS: INITIATIVES AND RECOMMENDATIONS
Blood transfusion dependent patients of thalassemia major (close to 2 lakhs in India), who need blood transfusions every 15-20 days, are facing unprecedented challenges due to the current pandemic. From availability of blood in blood banks to availability of transportation and transfusion facilities, there are multiple challenges being faced by these patients in the wake of Covid-19 pandemic. Problems vary in kind, size and degree across the length and breadth of India. For instance, while Kolkata is seeing blood donations, blood transfusion facilities are posing a challenge. Delhi, on the other hand, is battling blood availability due to cancellation of blood donation camps. Many NGOs and individuals across India are trying to salvage these patients from the current situation.
“To Protect the overall interests of Thalassemics and prevent Thalassemia.”
“To advocate for a Thalassemia Free India where all Thalassemics are cured or healthy.”
What is Thalassemia
Thalassemia is a blood disorder passed down through families (inherited) in which the body makes an abnormal form or inadequate amount of hemoglobin. India is the thalassemia capital of the world. Together, we set out to change that. In 2017, seven adult blood transfusion dependent thalassemics came together to set up Thalassemia Patients Advocacy Group (TPAG), under the aegis of Thalassemics India (parent body). What started with seven, spread to over thirty-five members and volunteers across India in less than two years. Between thirty-five of us and supported by our parent body’s legacy, we share a network of over ten thousand thalassemics in the country.
Empowered with knowledge about our condition; experienced in fields like law, teaching, psychology and information technology; and exposed to geographies around the world – we exist to protect the overall interests of thalassemics and prevent Thalassemia in India.
Recognising the need and value of advocacy in the area of thalassemia, seven adult thalassemics accomplished in the fields of psychology, law, IT and education, came together to found Thalassemia Patients Advocacy Group (TPAG) under the aegis of Thalassemics India in 2017. On 16 September 2017, TPAG was formally launched by Mr. Manish Sisodia, Deputy Chief Minister of the National Capital Territory of Delhi.
Orientation of TPAG India
Orientation Program held on 29 July 2018
“India is the Thalassemia Capital of the World. At TPAG, We are Committed to Working with the Policy Makers and other Stakeholders towards Changing this Reality.”
Thalassemia Patients Advocacy Group