Sickle Cell disease

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19-Jun-2023: Sensitization Workshop on Sickle Cell Disease on World Sickle Cell Day in the virtual mode

Observing the World Sickle Cell Day today, Shri Arjun Munda, Union Minister of Tribal Affairs, chaired a Sensitization Workshop on Sickle Cell Anaemia Disease, organised at the National Tribal Research Institute in New Delhi.

Sickle Cell Disease (SCD), a genetic condition, is widespread among the tribal population in India where it is estimated that about 1 in 86 births among STs have SCD. The disease affects haemoglobin (responsible for carrying oxygen in the body) in red blood cells, which can result in morbidity and mortality via distinct pathways. Therefore, early detection, management, and treatment of SCD is of utmost importance to enable the affected individuals to lead a long and fulfilling life. The elimination of the disease is extremely significant for the general health conditions of the nation.

In order to discuss recent developments in the management of Sickle Cell condition, including early detection and new treatments, the workshop brought together a group of experts on the condition from throughout India.

Taking note of the importance of this day, Minister appealed, “Under the visionary guidance of the Hon’ble Prime Minister, Shri Narendra Modi, Sickle Cell Elimination has been undertaken in the mission mode by the Ministry of Tribal Affairs; however, all of us need to make a collaborative effort to address this issue by working at the individual level to educate people about the disease, especially at the grassroots level. I appeal to all the medical experts, Ministry of Health and Family Welfare, Ministry of Ayush, Health Organisations, Health Departments to give impetus to the cause of good health for tribals and ensure that quality healthcare is provided to those affected by this disease to create a positive impact in the health of the tribal population.”

Further, he urged state governments to cooperate in this goal by ensuring proper infrastructure and facilities. “We need to ensure that individuals -- especially women and children -- are free from this disease and it doesn’t impact the coming generation,” he added.

Shri Munda also assured that the Ministry would continue to work with the Ministry of Health & Family Welfare along with other relevant ministries, government officials, stakeholders, clinicians and experts for prevention, control, and management of sickle cell disease.

4-Feb-2023: Government announces a mission to eliminate Sickle cell Anaemia by 2047.

Mission to Eliminate Sickle Cell Anaemia by 2047:

  • Announced in Union Budget 2023-24 by the Government of India.
  • Aims to eradicate SCD through prevention, screening, and management efforts.

Sickle Cell Disease (SCD) is a genetic disorder causing chronic anaemia, painful episodes, and organ damage.

Symptoms:

  • Chronic anaemia leading to fatigue, weakness, and paleness.
  • Painful episodes (sickle cell crisis) causing sudden and intense pain in bones, chest, back, arms, and legs.
  • Delayed growth and puberty.

Treatment:

  • Blood transfusions to relieve anaemia and reduce pain crises.
  • Hydroxyurea to reduce frequency of painful episodes and prevent long-term complications.
  • Bone marrow or stem cell transplantation.

Government Initiatives:

  • Technical operational guidelines for prevention and control of hemoglobinopathies released in 2016, including sickle cell anaemia.
  • Integrated centers established in 22 tribal districts for diagnosis and treatment.
  • State Haemoglobinopathy Mission established in Madhya Pradesh to address challenges in screening and management.
Pin It
Whatsapp

19-Jun-2023: Sensitization Workshop on Sickle Cell Disease on World Sickle Cell Day in the virtual mode

Observing the World Sickle Cell Day today, Shri Arjun Munda, Union Minister of Tribal Affairs, chaired a Sensitization Workshop on Sickle Cell Anaemia Disease, organised at the National Tribal Research Institute in New Delhi.

Sickle Cell Disease (SCD), a genetic condition, is widespread among the tribal population in India where it is estimated that about 1 in 86 births among STs have SCD. The disease affects haemoglobin (responsible for carrying oxygen in the body) in red blood cells, which can result in morbidity and mortality via distinct pathways. Therefore, early detection, management, and treatment of SCD is of utmost importance to enable the affected individuals to lead a long and fulfilling life. The elimination of the disease is extremely significant for the general health conditions of the nation.

In order to discuss recent developments in the management of Sickle Cell condition, including early detection and new treatments, the workshop brought together a group of experts on the condition from throughout India.

Taking note of the importance of this day, Minister appealed, “Under the visionary guidance of the Hon’ble Prime Minister, Shri Narendra Modi, Sickle Cell Elimination has been undertaken in the mission mode by the Ministry of Tribal Affairs; however, all of us need to make a collaborative effort to address this issue by working at the individual level to educate people about the disease, especially at the grassroots level. I appeal to all the medical experts, Ministry of Health and Family Welfare, Ministry of Ayush, Health Organisations, Health Departments to give impetus to the cause of good health for tribals and ensure that quality healthcare is provided to those affected by this disease to create a positive impact in the health of the tribal population.”

Further, he urged state governments to cooperate in this goal by ensuring proper infrastructure and facilities. “We need to ensure that individuals -- especially women and children -- are free from this disease and it doesn’t impact the coming generation,” he added.

Shri Munda also assured that the Ministry would continue to work with the Ministry of Health & Family Welfare along with other relevant ministries, government officials, stakeholders, clinicians and experts for prevention, control, and management of sickle cell disease.

4-Feb-2023: Government announces a mission to eliminate Sickle cell Anaemia by 2047.

Mission to Eliminate Sickle Cell Anaemia by 2047:

  • Announced in Union Budget 2023-24 by the Government of India.
  • Aims to eradicate SCD through prevention, screening, and management efforts.

Sickle Cell Disease (SCD) is a genetic disorder causing chronic anaemia, painful episodes, and organ damage.

Symptoms:

  • Chronic anaemia leading to fatigue, weakness, and paleness.
  • Painful episodes (sickle cell crisis) causing sudden and intense pain in bones, chest, back, arms, and legs.
  • Delayed growth and puberty.

Treatment:

  • Blood transfusions to relieve anaemia and reduce pain crises.
  • Hydroxyurea to reduce frequency of painful episodes and prevent long-term complications.
  • Bone marrow or stem cell transplantation.

Government Initiatives:

  • Technical operational guidelines for prevention and control of hemoglobinopathies released in 2016, including sickle cell anaemia.
  • Integrated centers established in 22 tribal districts for diagnosis and treatment.
  • State Haemoglobinopathy Mission established in Madhya Pradesh to address challenges in screening and management.

2021

9-Aug-2021: Rs. 60.00 Crore have been released to the States seeking grants to tackle the Sickle Cell Anaemia, including screening

Ministry of Tribal affairs has taken several steps to prevent the prevalence of sickle cell anaemia. Sickle Cell Disease is a genetic blood disorder affecting tribal population in Central, Western and Southern India.

The Ministry of Tribal Affairs had given funds for screening of tribal students in collaboration with ICMR. Workshops have been conducted in States in collaboration with Department of Biotechnology for mapping of incidences of Sickle Cell Trait. Out of the 1,13,83,664 persons screened as reported by various States, about 8.75% (9,96,368) tested positive (Trait –949057, Disease – 47311).

Public Health is a state subject and Ministry of Health and Family welfare is the sectoral ministry for all health issues, including sickle cell. National Health Mission has prepared a comprehensive guideline to control and prevent Haemoglobinopathies, including Sickle Cell Disease, and has disseminated the same to the states. This includes prenatal diagnosis, counselling and setting up of early intervention centres to prevent and treat the complications arising from the disease. At present there is no permanent cure for the disease. However with good management of disease, severity and complications can be curtailed to improve the quality of life and life span of the people suffering with the disease.

In consultation with Department of Health Research, Ministry of Tribal Affairs has circulated advisories on Sickle Cell Disease with a protocol for premarital counselling of people with sickle cell trait (carrier). A total of about Rs. 60.00 Crore has been released to the States seeking grants to tackle the Sickle Cell Anaemia, including screening.

Further, details of various projects undertaken by the Ministry of Tribal Affairs are as under:

  1. Sickle Cell Disease Support Corner (https://scdcorner.in/) has been developed in collaboration with Piramal Swasthya Management and Research Institute, to create a database of individuals with SCD or trait in the tribal populations; to connect these individuals to welfare schemes, disease-specific healthcare services and validated health information and to enable data-driven policy insights and strategic inputs. The issue has been inter-alia taken up with Chief Secretary(s) vide D.O. letter dated 18.06.2021 regarding compilation of SCD data at state level.
  2. TRI  Division of MoTA has sanctioned a research study program to Sir Ganga Ram Hospital on sickle cell disease wherein the organization is required to prepare treatise on SCD for training of trainers in medical colleges and modules for training of medical officers at district hospitals and integrated center for hemoglobinopathies and hemophilia. Project will also cover 4-5 workshops for training of trainers. As on date, Sir Ganga Ram Hospital has prepared draft modules and these have been scrutinized by Technical Expert Group (TEG) comprising of experts in the field. Modules have now been forwarded to Directorate General Of Health Services (DGHS), Ministry of Health & Family Welfare for their comments.
  3. Integrated Sickle Cell Anemia Research Program "I-SCARP” in Nandurbar district, Maharashtra: TRI Division has given this project to Swami Vivekananda Yoga Anusandhana Samsthana, S-Vyasa University, Bangalore and INFOMED, Ahmedabad. The project primarily aims to explore naturopathy and yogic methods for curing sickle cell anaemia disease and it is ongoing.
  4. TRI Division has given a project of Mapping of Sickle Cell Anaemia in the Tribal Sub Plan Area among the Tribal Communities of the State and a Compendium of Empirical Studies & Its findings on Sickle Cell Anaemia among the Tribal Communities of ODISHA to TRI Odisha which is to be executed in collaboration with RMRC, Odisha.
  5. A project ‘Diagnosis, IEC and Nutri support for sickle cell anaemia and Thalassemia affected patients’ to TRI Telangana and it is to be done in consultation with Piramal Foundation and other organizations working with MoTA on SCD project.
  6. A project entitled ‘Mapping of Sickle Cell Anaemia among the Tribal Communities, Collation of compilation of data, mapping of organisations working in Sickle Cell, Data base of master trainers on sickle cell in co-ordination with MoHFW, Data sharing mechanism and mapping of Blood Banks availability’ has been given to NTRI.

The Sickle Cell disease can be eliminated only if mass awareness campaign is started and there is participation of States, elected representatives, teachers and medical staff at schools and college level. Dedicated Health Cell has been established in Ministry for ensuring the STC component of Health is utilized effectively. Ministry has asked States to submit proposals for funding for basic Infrastructure- as per ready Reckoner and a letter from Secretary, Ministry of Tribal Affairs to Chief Secretaries of States. Ministry has also taken up the issue of disability certificate issued to SCD patients with Department of Empowerment pf person with disabilities, who have notified that Disability Certificate for than 80% disability would be valid for 3 years.

2020

19-Jun-2020: Need to create more awareness in rural/ tribal areas about Sickle Cell disease and its management

The Minister for Tribal Affairs, Shri Arjun Munda emphasized on the need to create more awareness about Sickle Cell disease in the county.

Addressing a webinar ‘National Sickle Cell Conclave’ to mark the World Sickle Cell Day, organized by FICCI, jointly with Ministry of Tribal Affairs, Apollo Hospitals and Novartis, Mr Munda said, “The government is committed to address and find a solution to deal with  Sickle Cell disease in India.”

Mr. Munda said that in order to collect real time data and provide relevant information related to Sickle Cell, the government has launched a new portal which will act as catalyst in creating awareness. “The portal will have real time data through a dashboard along with registration facility, information about the disease and various government initiatives undertaken.”

Highlighting the importance of Sickle Cell awareness, Mr Munda said, “Today, people in the rural areas are alert about COVID19 which happened due to increased awareness towards the disease. We now need to create more awareness about the Sickle Cell disease in the rural and tribal areas also. The Ministry has also initiated ‘Action Research’ project under which Yoga dependent lifestyle should be promoted and to reduce the complications in the patient suffering from this disease.”

Urging more participation from the state governments, Mr Munda said that the Ministry is looking at ways to control the disease and we will continue to take all necessary steps as required. “Sickle Cell disease not only impact the individual’s lifecycle but also impacts the economy as well,” he added.

Mr. Munda said that, states should adopt more efficient measures to create a database of the patients, increase screening along with ensuring proper medical facility. “We need to ensure that the next generation should be free from this disease. There is a social stigma today in the society, we not only need to reduce this, but also find better ways to manage the disease.”

He also urged the industry and other stakeholders to come forward to improve the overall system of managing the Sickle Cell program of the government.

Dr Sangita Reddy, President, FICCI said, “FICCI is committed to provide continued support in handling of this disease. The chamber has been undertaking various endeavours to accelerate the economic development of the country with a special focus on the marginalized section of the Indian society.”

The aim of the webinar is to increase awareness in the community, the global burden of the Sickle Cell Disease (SCD) disorder and its prevalence in India. Sickle cell disease (SCD) which is the most prevalent inherited blood disorder, is widespread amongst many tribal population groups in India, posing a considerable health burden in several states. While there are several cost-effective interventions which have dramatically reduced morbidity and mortality from SCD in developed countries, the access to care for SCD in the tribal regions of India is limited.

During the webinar The Economist Intelligence Unit (EIU) – Novartis report ‘Stepping out of the shadows – Combating Sickle Cell Disease in India’ was also released.