As new therapies beyond blood transfusion and iron chelation emerge for the management and treatment of thalassemia, stakeholders in the sector have called for the revisit of the seven-year-old national guidelines with an aim to improve outcomes and overall quality of life of the persons with the genetic blood disorder.
Talking to The Pioneer, Shobha Tuli from Thalassemics India, said that “we are now faced with an urgent need to launch a national-level thalassemia programme on the lines of sickle cell disease but with a stricter timeline. In this regard, 2016 guidelines on hemoglobinopathies may need a revision to include novel technologies and unique methods of awareness.”
She explained that since the framing of the guidelines, various initiatives and changes have taken place. “There are some curative options available now. Then there is a new drug Luspatercept which was launched last month and has shown good results.
"The novel screening technologies are also available and a large number of new point-of-care facilities across the country. At these PoCs, new technologies, medicines should be made available to ensure quality life of the patients,” she said on the sidelines of the roundtable on the prevention of Hemoglobinopathies - Sickle Cell Disease and Thalassemia hosted by the Thalassemia Patients Advocacy Group (TPAG), in association with The Associated Chambers of Commerce and Industry of India (ASSOCHAM) held recently.
It is estimated thatabout 10000 kids are born every year in India while there are about 100,000 thalassemia patients and approximately 30-45 million carriers of thalassemia.
A lot of emphasis should also be given to pre-marital counselling of prospective couples so that they are encouraged to test themselves if they are carriers of thalassemia. If that may not seem practical, testing of carrier status of parents with each pregnancy (antenatal) must be made mandatory, Tuli further continued.
At the event, Dr Anil Kumar, Additional Deputy Director General, Directorate General of Health Service, Union Health Ministry noted that, “Hemoglobinopathies continue to pose a significant burden on our healthcare system, with limited resources available to address the challenges they present. While our office is working on a national level thalassemia control programme, we are equally focused on the management of thalassemia and commit to blood safety through Nucleic Acid Testing (NAT), voluntary blood donation, etc in a phased manner.
“We aim to release a manual on blood transfusion services and voluntary blood donation guidelines by 14th June which is World Blood Donor Day,” he said.
At the panel discussion on the current practices, challenges, and the need of the hour for the screening of Hemoglobinopathies in public and private settings, doctors and healthcare experts like Dr Ritika Sud, Prof of Medicine, LHMC and SSK Hospital, Delhi, Dr K Madan Gopal, Senior Consultant, Niti Aayog, Dr Hrishikesh D Pai, President, FOGSI, Dr Anil Handoo, Lab Director, BLK Hospital, Delhi, among others, shared their thoughts.
Anubha Taneja-Mukherjee, Member Secretary, Thalassemia Patients Advocacy Group, said, “We must recognize the significant burden of haemoglobin disorders, including, Hemophilia, Thalassemia and Sickle Cell Disease, and work towards finding innovative solutions to combat them.”
At the event, Dr Pai promised that all gynecologists members of the FOGSI will work to create awareness about the genetic blood disorders to the would-be-mothers so that such births can be prevented.
