Thalassemia management requires a participative approach: Experts

Thalassemics India and Thalassemia Patients Advocacy Group organize a discourse on prevention and management of Thalassemia

New Delhi: On the occaion of International Thalassemia Day, Thalassemics India and Thalassemia Patients Advocacy Group organized a hybrid session talking about the situation of Thalassemia management in India, and Initiatives taken by government bodies on the care and prevention of Thalassemia.
“Thalassemia management requires a participative approach where the initiative should be from stakeholders to create an ecosystem at the centre of which is the person, in this case, being the patient. Healthcare delivery needs to be looked at from the patient’s perspective and it must be a continued approach unlike in the past,” says Dr Shubnum Singh, Principal Advisor Health Policy Confederation of Indian Industry (CII) on the role of strategic partnerships in the prevention & care of Thalassemia.
“At CII, we leverage our SMEs and corporate partnerships, to disseminate knowledge of thalassemia to their employees. This we’ve done using creating a toolkit to encourage organizations to have cheerleaders, there are people who have had the disease in the past and talk to others to encourage them to talk about the same. The concept of open dialogue between the state and the Center has been very useful to iron out these issues,” Ms Singh added.
CII is TPAG’s partner for their Safe Blood Campaign and commenting later on Dr. Singh’s address, Ms Anubha Mukherjee, Member Secretary, TPAG informed that CII has written to over 20 States regarding the subject. TPAG itself has written to Union Health Minister Dr. Mandaviya on issuing an advisory to the States on NAT screened blood for thalassemics. 
To talk about the New Delhi government’s initiatives on the care & prevention of Thalassemia, Dr Seema Kapoor, Nodal officer, State Blood Cell, Govt. of NCT of Delhi said, “That there are 3 pillars to be focused on when it comes to spreading awareness and actioning on thalassemia. The first is to create a registry which will be important for all public and private sector hospitals to enroll and add every year number of babies who have been diagnosed in any sector to know how much blood, nature of drugs, and facilities we require to be better prepared. Second is availability of more leuco depleted blood bags and uniform availability across the public and private sector. The third is to enhance antenatal and prenatal centers and register nursing homes and ensure such data is being recorded.”
Dr Neelam Dhingra, Unit Head of the Patient Safety Flagship – A Decade of Patient Safety 2020- 2030 World Health Organization while talking about Thalassemia and sustainable development goals set by WHO said, “Globally, one in every 10 Patients is harmed while receiving hospital care in high-income countries, whereas 1.3 4 million adverse events occur each year in low and middle-income countries in hospitals, which results in 2.6 million deaths annually. The role of International Thalassemia Day is extremely crucial when it comes to engaging and empowering patients and not just patients but also their family and friends to involve them in policymaking and to ensure that the patient body is involved every step of the way. This will be WHO’s focus for the next 10 years when it comes to patient safety.”
Harsh Mangla (IAS), Director, Ministry of Health & Family Welfare, Govt. Of India talked about the National Health Missions (NHM) journey on Thalassemia. He said, “The strategy that NHM has adopted has been towards prenatal and new-born screening. We understand that there is a lack of data on the number of thalassemia patients in India and the cost of certain drugs is expensive. We have ensured that there is an ABHA ID which is a unique patient ID that can be used across various hospitals with planners and policymakers. We also have Thalassemia Bal Sevak Yojana which provides funding for bone marrow transfusion to the family. We are working to increase the limit for this from 5 lakh to 8 lakh and to add more necessary drugs as essentials. NHM commits its support to Thalessemics India.”
Eminent medical professionals including Dr. Shubnum from CII Public Health Council and Dr. Smita Mahapatra, Associate Professor, Department of Transfusion Medicine, SCB Medical College, Cuttack, Odisha, Dr Seema Kapoor, Nodal officer, State Blood Cell, Govt. of NCT of Delhi and representatives of patient bodies participated in the discussion.
RP Gautam, Social Justice Minister of Delhi was the Chief Guest, Vinita Srivastava of Ministry of Tribal Affairs, Dr. Neelam Dhingra of WHO and Harsh Mangla, Director, Ministry of Health and Family Welfare was also present.