Lack of clarity about inclusion of thalassemics in Person with Disability Bill, 2016

By EH News Bureau Last updated Dec 6, 2020

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While voluntary blood donations are back to pre-COVID levels, speakers at ASSOCHAM meet on Importance of Blood Donation & Managing Wellness of People with Thalassemia, stress need for more awareness and mindset change in states that lag in blood donations

The Associated Chambers of Commerce and Industry of India (ASSOCHAM) concluded the 12th edition of the ‘Illness to Wellness’ series themed Importance of Blood Donation & Managing Wellness of People with Thalassemia on the occasion of International Day of Persons with Disabilities. The event saw an expert panel of Thalassemia specialists hold an informative dialogue on hindrances faced by Thalassemia patients and blood centers during COVID-19, inclusion of Thalassemia in the Disabilities Act, 2016 and blood donation awareness in India.

The programme which promotes healthy living with a focus on wellness and preventive health through healthy habits, diet, exercise, and holistic health saw veteran speakers discuss the distress blood centers faced due to lack of donors during the lockdown.

Commenting on the efforts made by authorities to encourage blood donations during the lockdown, Dr. Sunil Gupta, Addl. DGHS, NACO and Director (National Blood Transfusion Council) said, “The scare that was initially present in the minds of the staff at the blood center was removed through proper sanitisation measures, social distancing and methodical way of blood collection via prior appointments. Donors initially faced movement restrictions, for which certificates were issued for them. We also had more than 30 mobile blood collection vans to reach out to communities and societies. By end of July there was a significant improvement in blood collection from the bleak scenario in March end and April. Now our collection is almost close to that of pre-COVID times.”

He also emphasised the need to change mindsets through awareness about voluntary donation of blood. “As per data of NACO, currently, 70 per cent of blood donations are voluntary. Some states such as Gujarat, Maharashtra, Kerala and Tamil Nadu are particularly very active in voluntary blood donations. At the same time, some states are lagging and there is a huge gap. We are trying to analyse why this gap exists in the same country and have realised that it has to do with the prevailing culture of the state and the mindset of the population. There is a need to change mindsets,” he said.

Dr. Amita Mahajan, Senior Consultant Pediatric Hematology & Oncology Indraprastha Apollo Hospitals, Delhi elaborating on overcoming hindrances faced by hospitals and blood centres during COVID-19 lockdown said, “The pandemic has been both a challenge and a unique opportunity to look for productive pathways. We have been able to come up with solutions that will be present with us beyond the pandemic. During the pandemic, patients were scared to come to the hospital and donors were also scared of contracting COVID from hospitals. It was also not possible to hold blood donation camps as maintaining social distance would become difficult. To resolve these, at the hospital we made separate entries and exits for voluntary donors. We issued special movement passes to donors and reached out to previous donors and assured them of safety during donation.”

Highlighting the need for sensitising people about voluntary blood donations and how it helps patients of blood disorders, Anil Rajput, Chairman, ASSOCHAM CSR Council, said “There are multiple challenges being faced by thalassemic patients in the wake of this pandemic. Considering the ongoing COVID-19 pandemic, there is an urgent need to sensitise the importance of voluntary blood donation which can help patients suffering from blood disorders as well as in emergency cases. In our country, 2 million people suffer from thalassemia and many other disabilities. Blood donation and transfusion are crucial to the essential services especially for these patients.”

Stressing on the lack of awareness of thalassemia and clarity on the inclusion of its patients in the list of disabilities under The Rights of Persons with Disabilities Act, 2016, Deepak Chopra, Founder & President, Thalassemics India, said, “The primary reason why Thalassemia patients have not received enough benefits from the act is due to inadequate awareness. When the act unfolds itself, only then will those who are supposed to get benefits from it can knock at the right doors. We are yet to understand the provisions of the act so there is a need to delve more. There are not many interfaces known to patients as to how and to whom they should present their issues. As far as the act is concerned, it is yet to reach out to patients.”

Dr. Pawan Kumar Singh, Head of Oncology, Organ Transplant, Hematology, Hematopoietic Stem Cell Transplant department, Artemis Hospitals, Shri Rajesh Mittal, Founder & Chairman, Alamak Capital Advisors, CSR Chair (2020-21), Rotary District 3011, George Constantinou, Thalassemia Patient &Board Member, Thalassemia International Federation, Chethan Manchegowda, Founder, Khoon, and Anubha Taneja Mukherjee, Legal & Policy Advocacy Professional; Member Secretary, Thalassemia, Patients Advocacy Group (TPAG), were other distinguished speakers and panelists present who significantly reiterated on the substantial need of volunteer blood donation to manage wellness of people with Thalassemia.