On 1st July, Prime Minister Shri Narendra Modi launched the National Sickle Cell Anaemia Elimination Mission in Shahdol, Madhya Pradesh. During the event, he distributed sickle cell genetic status cards to the beneficiaries. The Prime Minister also started the distribution of around 3.57 crore Ayushman Bharat Pradhan Mantri Jan Arogya Yojana (AB-PMJAY) cards in Madhya Pradesh. In addition, he paid homage to Rani Durgavati, the ruling queen of Gondwana in the mid-16th century.
In his address to the gathering, the Prime Minister highlighted the significance of Rani Durgavati and mentioned that the National Sickle Cell Anaemia Elimination Mission, inspired by her, was being launched. He also announced the issuance of 1 crore Ayushman Cards to the people of Madhya Pradesh. The Prime Minister emphasized that the Gond, Bhil, and other Adivasi communities are the biggest beneficiaries of these initiatives.
National Sickle Cell Anaemia Elimination Mission
Sickle cell disease is a genetic blood disorder that has a significant impact on the lives of those affected. It is more commonly found in tribal populations in India, but it can also affect non-tribal individuals. The disease not only causes anemia, but also pain crises, stunted growth, and affects various organs such as the lungs, heart, kidneys, eyes, bones, and brain.
- India has the highest concentration of tribal population worldwide, with approximately 8.6% of the population, or 67.8 million people, belonging to tribal communities according to the 2011 Census.
- The Ministry of Health and Family Welfare (MoHFW) has recognized sickle cell disease as one of the ten major health issues affecting tribal communities disproportionately.
- In 2016, the Ministry of Health, under the National Health Mission (NHM), initiated efforts to address hemoglobinopathies including thalassemia and sickle cell disease.
- Comprehensive guidelines for the prevention and management of these disorders were released, and funding was allocated for the screening and management of sickle cell disease based on proposals from the states.
- However, due to the pandemic, efforts towards prevention through screening and awareness activities were affected.
Therefore, it is now considered necessary to establish a separate scheme or mission dedicated to the detection, management, prevention, and awareness of sickle cell disease. This initiative aims to provide targeted support and resources to tackle the challenges posed by the disease and ensure better outcomes for affected individuals and communities.
The mission is to improve the care and well-being of all individuals affected by Sickle Cell Disease (SCD) and to reduce the prevalence of the disease through a coordinated approach that includes screening and awareness strategies.
The vision is to eliminate sickle cell disease as a public health problem in India by the year 2047. We aim to achieve this by increasing community awareness about the disease, implementing mass screening activities for early identification, establishing a robust network for diagnosis and treatment, implementing effective monitoring systems, strengthening primary healthcare to incorporate SCD-related strategies, enhancing the capacity of healthcare teams at all levels, and implementing cost-effective interventions at higher care facilities.
The overall goal is to ensure that all individuals affected by SCD have access to affordable and high-quality healthcare and to reduce the prevalence of the disease through increased awareness, improved practices, and effective screening interventions.
The main goals of the mission are:
- Provide affordable and accessible care to all SCD patients:
- Ensuring that healthcare services and treatments for SCD are affordable and available to everyone.
- Making sure that necessary medications and therapies are accessible to SCD patients.
- Collaborating with healthcare providers and organizations to expand SCD care options.
- Ensure quality of care for SCD patients:
- Implementing guidelines and protocols to improve the diagnosis, treatment, and management of SCD.
- Enhancing the skills and knowledge of healthcare providers to deliver high-quality care.
- Monitoring and evaluating healthcare services to maintain standards of quality.
- Reduce the prevalence of SCD:
- Raising awareness about SCD through educational campaigns to inform people about the condition and how to prevent it.
- Conducting widespread screening programs to identify individuals with SCD and provide early interventions.
- Working with community organizations, schools, and other stakeholders to promote healthy lifestyles and preventive measures.
To achieve these objectives, the mission will focus on various strategies, including creating awareness, strengthening screening and testing facilities, improving laboratory services for diagnosis, facilitating management and treatment, establishing connections between different levels of care, promoting collaboration between different sectors, and ensuring that SCD patients have access to social security schemes and benefits packages.
The approach focuses on three main principles:
- Health Promotion: Raising awareness and providing counseling about genetics before marriage to prevent genetic disorders.
- Prevention: Conduct screenings for everyone and detect diseases at an early stage to prevent further complications.
- Comprehensive Care: Ensuring the proper management of individuals with sickle cell disease at different levels of healthcare. Treatment facilities are available at advanced healthcare centers. Additionally, a support system is in place to assist patients. The community is encouraged to adopt these practices.
The program will be implemented in a systematic manner to cover the entire population aged zero to 18 years, gradually expanding to include those up to 40 years of age. It will be part of the National Health Mission and will primarily focus on conducting universal screenings, prevention measures, and effective management of sickle cell anemia in tribal areas and regions with high prevalence across states and union territories in India.
In the initial stage, the program will prioritize interventions in states and union territories with a high prevalence of sickle cell disease, particularly those with tribal populations. Subsequently, it will expand to include all states and union territories in a phased manner, taking an incremental approach. Over a period of three and a half years, the mission aims to reach and provide screening, counseling, prevention, and care to approximately 70 million people affected by sickle cell disease.
To ensure efficient utilization of resources and avoid duplication of efforts, the program will integrate with existing mechanisms and strategies under the National Health Mission. Existing platforms such as the Rashtriya Bal Swasthya Karyakram (RBSK) and the Pradhan Mantri Surakshit Matritva Abhiyan (PMSMA) will be leveraged to achieve the targets set for the Sickle Cell Mission.
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