“Sickle Cell Disease is a multi-sectoral mission leveraging community mobilization and stakeholder collaboration. Elimination of Sickle Cell Disease an integral part of achieving the holistic vision of health for all in India”. This was stated by Dr. V K Paul, Member Health, Niti Aayog as he addressed the Post Budget Webinar “Leaving No Citizen Behind” in the presence of Shri Rajesh Bhushan, Secretary, Ministry of Health today.
Speaking on the occasion, Dr. Paul stated “We have to make a collation at the ground level that connects each and every stakeholder. We need to make this as Jan Andolan to reach the last mile”. In resonance with this, Dr Paul emphasized on the need to generate awareness of Sickle Cell Disease wherein ‘opportunity testing’ is encouraged, as it would expedite treatment from those already suffering from the disease. He emphasized on the role of Ministry of Tribal Affairs in community mobilization and stakeholder collaboration in defining the medium and modes for reaching affected tribal areas.
He further stated “it needs to be widely known that Pradhan Mantri Jan Arogya Yojana provides full treatment for Sickle Cell Disease, free of cost”. Dr Paul advocated forming of healthcare professional partnerships that would facilitate wide assimilation and sharing of knowledge on a nationwide scale. He stressed on the importance of incorporating pregnancy screening as well as easy accessibility of Hydroxy urea and pneumococcal vaccine.
Reiterating the need for collective action, Shri Rajesh Bhushan, Union Health Secretary said “employing a whole of government, whole of society approach is essential for eliminating this disease from the nation within a defined timeframe”. He elaborated that the portal on Sickle Cell Disease Management has already been established and a mobile application is also underway for which the training and orientation has commenced for state governments.
Shri Bhushan emphasized that “it is imperative to define a framework for time-bound implementation on a state, block and district level to ensure last-mile delivery at grassroot level”.
He further added “ICMR has conducted a health technology assessment for existing point-of-care tests that have been manufactured in India, endorsing their efficacy. This has been followed by onboarding of state governments on these point-of-care tests, their rates, and the possible symptoms that may be prevalent with the targeted group of 7 crore people for whom screening will be done”
Reiterating the role of the ministry, the Health Secretary stated that the Ministry of Health will support the state governments through National Health Mission for providing financial support. The state governments can choose the level of screening i.e., one level or two level of screening that they deem fit. Additionally, the health ministry has appointed ICMR, AIIMS, and medical colleges as nodal agencies for all states as a point of reference regarding technical guidance.
Ms. R Jaya, Additional Secretary, Ministry of Tribal Affairs mentioned that Ministry of Tribal Affairs will delve into the outreach aspect of the mission including communications with stakeholders, developing guidelines for training of trainers, and for awareness generation, non-medical care of patient and genetic counselling. She stated “Health needs and health care of the tribal population is to be understood socio-culturally” hence advocacy of early management practices, collaborations with Gram Sabha, community mobilization, translation of content into tribal languages will additionally serve to enhance reach of the mission.
Through a detailed presentation, a granular detail analysis of disease burden, objectives, strategies, approaches like universal screening and awareness generation in collaboration with Ministry of Tribal Affairs, diagnostics and treatment, comprehensive care of new-born with Sickle Cell Disease, universal screening and early diagnosis, Sickle Cell Portal, steps taken with integration of AYUSH, role of Ministry of Health and Family Welfare and Ministry of Tribal Affairs, role of ICMR, Department of Biotech and other research institutions, Role of AIIMS and other medical colleges as Centres of Excellence, Role of Other Ministries/Dept. of National Sickle Cell Anemia Mission was presented.
Senior officials from the government, representatives from WHO, UNICEF, UIDB, civil society organizations, health care provider organizations were also in attendance for this webinar.