• October 23, 2021

Thalassemia Patients Group call for inclusion of patients in policy making at APPIS 2021

New Delhi, March 2021 – Thalassemia Patients Advocacy Group (TPAG) stressed the importance of involving patients in the policy making at the ongoing Asia Pacific Patient Innovation Summit (APPIS), a unique collaborative partnership initiated to address the evolving capability needs of patient organizations across Asia Pacific and beyond. Themed “Co-creating patient advocacy of the future”, this 3-day virtual summit scheduled between 2nd and 4th March 2021 has been organized to support patient organizations to be better equipped and have their voices amplified in the healthcare system.

The APPIS initiative has been brought together by five patient organizations for the betterment of people dealing with rare cancers, disabilities among others. Targeting patient communities across Asia Pacific, the Summit aims to set out a valuable blueprint for the future of patient engagement, encompassing strategic aspects of patient organization capabilities, such as funding, stakeholder partnership, and clinical trials engagement.

While speaking on “Policy making process and patients’ role in it” during the event, Anubha Taneja Mukherjee, Member Secretary, Thalassemia Patients Advocacy Group, showcased a case study on TPAG’s Safe Blood Campaign, which is aimed at advocacy for propagation, implementation and formulations of laws and policies that ensure safe blood transfusions in line with global best practices. Through her case study, Mukherjee pointed out how needle has begun to move for blood safety through a powerful collaboration between TPAG, think tanks like Vidhi Centre for Legal Policy, industry bodies, private players, and policy makers. “We should replicate and institutionalize such collaborations for effective policy formulation and implementation in healthcare sector”, she said.

Resonating the thought-process, Dr. Urvashi Prasad, Senior Public Policy Specialist, NITI Aayog shared, “Policy making is a consultative process and involves a huge gamut especially in India and there is a possibility that sometimes,  certain issues don’t come into the eyes of policy makers as they should as the challenges involving certain disease conditions may not be evident to them. In such a scenario, we do see a significant role of civil society groups and NGOs coming forward and highlight these issues in the healthcare space. There is more role for patient advocacy groups and patients themselves to actually engage on relevant forums to educate the people in the system by sharing the human aspect of the challenges and suffering.”

While moderating the session on ”Partnering for a win-win situation”,  Mukherjee further said, “When it comes to policy making for patients, I strongly feel that decision makers may not be experts in every subject or issue and it would therefore be pertinent to include a patient representative who understands the trials and tribulations involving the relevant condition. For instance, the decision makers could invite thalassemia patients to be a part of the policy making while devising a new policy on thalassemia as patients are the ones who undergo the hardship of a particular disease. Patient Advocacy Group (PAG) are well known for their role and achievements in establishing better health services for patients in several countries of the world.  India should replicate this.”

 Ms. Dhvani Mehta, Co-founder at Vidhi Centre for Legal Policy re-iterated, “Collaboration with civil society and patient groups helps us to understand any problem and accordingly investigate the existing legal scenario to find a solution. During our work on the Blood Safety Campaign, TPAG helped us to understand the challenges and find a workable solution. We definitely need such support from the civil society and patient groups to identify the challenges and find ways to resolve them.

The eminent panel consisting of other key speakers including Mr. Ben Kamarck, Head of Public Affairs Advocacy Asia Pacific, Novartis and Mr. Vivek Tomar from India ALK Positive endorsed the role of patients in bringing in the required change in the healthcare policies in line with the popular slogan #NothingAboutUsWithoutUs.

About TPAG:Recognising the need and value of advocacy in 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.

APPIS: An initiative led by patient organizations for patient organizations:Organized and funded by Novartis, the APPIS initiative launched during the Summit is championed by a Steering Committee drives the design and delivery of a continuing capability program. The new initiative, supported by modular training programs, is informed by data from a co-created capability needs assessment survey and by the insights and perspectives of the Steering Committee members. Targeting patient communities across Asia Pacific, the Summit aims to set out a valuable blueprint for the future of patient engagement, encompassing strategic aspects of patient organization capabilities, such as funding, stakeholder partnership, and clinical trials engagement.

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