Context: A significant milestone has been crossed by the Health Ministry. More than 1 crore people have been screened for Sickle Cell Disease under the National Sickle Cell Anaemia Elimination Mission.
National Sickle Cell Anaemia Elimination Mission (NSCAEM):
Objective:
The NSCAEM is geared towards eradicating sickle cell anaemia from India by 2047, coinciding with the nation's 100th year of independence.
Key Goals:
Awareness Creation:
The mission seeks to foster awareness among the general public and healthcare professionals regarding the prevention and management of sickle cell anaemia.
Health Improvement:
To mitigate the morbidity and mortality associated with sickle cell anaemia, the mission aims to enhance the overall quality of life for affected individuals and their families.
Contribution to SDGs:
The NSCAEM aligns with Sustainable Development Goals (SDGs), particularly those related to health, education, and social inclusion.
Key Components of the National Sickle Cell Anaemia Elimination Mission:
Screening:
All newborns and pregnant women will undergo screening for sickle cell trait or disease through a rapid and simple test. Positive cases will receive a genetic status card, facilitating access to appropriate healthcare and counseling services.
Prevention:
Couples identified as carriers of the sickle cell trait will receive counseling regarding the risk of having a child with sickle cell disease. Options for prevention, including prenatal diagnosis and medical termination of pregnancy, will be offered to those opting to avoid having an affected child.
Treatment:
Patients diagnosed with sickle cell disease will receive regular and free treatment encompassing blood transfusions, hydroxyurea therapy, pain management, and antibiotics. Enrolment in a national registry will aid in monitoring health outcomes and overall quality of life.
Research:
The mission places emphasis on supporting research and innovation related to sickle cell anaemia. This includes endeavors such as developing new drugs, vaccines, gene therapy, and stem cell therapy. Additionally, awareness and education initiatives targeting the public and healthcare professionals will be promoted.
Challenges in Implementing the National Sickle Cell Anaemia Elimination Mission:
Lack of Awareness and Stigma:
A significant challenge lies in the lack of awareness regarding one's sickle cell status and the associated implications. Individuals may also encounter discrimination and social exclusion due to their condition.
Shortage of Resources:
The successful execution of the mission necessitates ample funding, infrastructure, manpower, and a consistent blood supply. These Resourcess are critical for ensuring effective screening, prevention, and treatment of sickle cell anaemia.
Ethical and Legal Issues:
The mission involves navigating sensitive ethical and legal considerations related to genetic testing, prenatal diagnosis, abortion, and gene editing. Addressing concerns from certain sections of society on these matters is crucial.
Coordination and Collaboration:
Effective implementation relies on seamless coordination and collaboration among diverse stakeholders. This includes central and state governments, health departments, civil society organizations, research institutions, and international agencies.
Addressing these challenges requires the NSCAEM to adopt a multi-sectoral and multi-stakeholder approach, fostering collaboration among ministries, departments, agencies, organizations, institutions, communities, and individuals.
Possible Strategies for Implementation:
Enhancing Existing Sickle Cell Centres:
Strengthening the current network of sickle cell centres nationwide, ensuring they provide comprehensive care and support to patients and their families.
Widening Screening Programmes:
Expanding the reach of screening initiatives to cover all newborns and pregnant women. This involves utilizing accessible methods like paper-based tests or mobile apps for efficient and widespread screening.
Accessible Ensuring free or subsidized treatment for all patients in need, encompassing medications, blood transfusions, hydroxyurea therapy, and bone marrow transplants.
Innovation in Therapies:
Advancing research into new therapeutic approaches and technologies capable of curing or preventing sickle cell anaemia. This includes exploring possibilities such as gene therapy or gene editing.
Establishing a National Registry:
Creating a comprehensive national registry and database for sickle cell patients and carriers. This registry serves to monitor the progress and assess the impact of the mission effectively.
Sickle Cell Anaemia
Sickle cell disease (SCD) comprises a hereditary group of blood disorders with a genetic basis.
Cause:
It is an autosomal recessive disorder or Mendelian disorder triggered by a mutation in the hemoglobin-β gene located on chromosome 11.
Characteristics:
The mutation leads to defective hemoglobin (Hb), forming rod-like structures when releasing oxygen.
Red blood cells become rigid, taking on a sickle shape.
Transmission:
Typically inherited from parents to the child during birth, where both parents may carry SCD.
Symptoms:
Newborns with sickle cell anaemia may not exhibit symptoms for several months.
Common symptoms include extreme fatigue, fussiness, painful swelling in hands and feet, and jaundice.
Effects:

•     Misshapen cells lack flexibility, potentially blocking small blood vessels and impeding blood flow.
•    Premature death of sickle cells leads to chronic red blood cell deficiency, often referred to as sickle-cell anaemia.
•  Associated complications include chronic acute pain syndromes, severe bacterial infections, and tissue necrosis.

Treatment:

•  Treatment involves medication, blood transfusions, and occasionally, a bone-marrow transplant.
•  Bone marrow or stem cell transplantation, while offering a potential cure, entails several risks.

Steps Taken to Eradicate Sickle Cell Anemia:
Outreach Programs:
The Indian Council of Medical Research (ICMR) and the National Rural Health Mission (NRHM) are conducting outreach programs to enhance disease management and control.
Portal for Data Collation:
The Ministry of Tribal Affairs introduced a portal allowing individuals with the disease to register, facilitating comprehensive data compilation.
National Health Mission Guideline on Hemoglobinopathies:
The National Health Mission has issued guidelines on Hemoglobinopathies, establishing community-level services for pre-marital and pre-conception screening, supported by genetic counselling services.
Mission to Eliminate SCA:

• The union budget for FY 2023-24 has announced the initiation of a mission to eliminate sickle cell anemia by 2047.
• The mission emphasizes awareness creation, universal screening of individuals aged 0-40 in affected tribal areas, and counselling.
•  Funding for the mission will be allocated under the National Health Mission.