New Delhi: As the year 2023 draws to an end, we take a look at one of the significant initiatives taken by the government this year, to strengthen the healthcare sector.one of the key initiatives undertaken this year was – addressing Sickle Cell Anaemia (SCA), also known as Sickle Cell Disease (SCD), a genetic illness prevalent among the tribal population of the country. There are approximately 15 lakh sickle cell-affected patients in the country, according to the National Health Mission (NHM) estimates. The report states that out of three lakh children born with SCA worldwide every year, 50,000 are in India. Nearly 20 per cent tribal children succumb to the disease before reaching two years of age and 30 per cent by 25 years. Approximately 50 per cent would succumb by 40 years, and average life expectancy is 30 years below normal.
During the unveiling of the Union Budget in February 2023, Finance Minister Nirmala Sitharaman had said that the government will launch a mission to eradicate Sickle Cell Anaemia (SCA) by 2047. Following this, in July 2023, Prime Minister Narendra Modi launched National Sickle Cell Anaemia Elimination Mission (NSCEM), with the target of eradicating the disease by 2047. This is the first-of-its-kind government initiative addressing SCA.
The Prime Minister also issued Sickle Cell Genetic Status Cards to the beneficiaries, for the purpose of premarital and pre-conceptional counselling by matching the cards of prospective matches.
Matching the cards will indicate the likely chances of the children born to those whose cards are being matched, to have Sickle Cell Anaemia. According to the guidelines issued by the Ministry of Health and Family Welfare and the Ministry of Tribal Affairs, every individual who is screened for the disease will be provided the card. The front side of the card contains the status of the individual viz, Normal, Carrier or Diseased, gender, and test report (Sickle cell disease/ Sickle cell carrier/ Normal). Based on the card’s status, the individual will receive treatment and counselling services. The rear side of the card has details on possible outcomes of conception if any person with either sickle cell disease or carrier marries.
Speaking to the NDTV-Dettol Banega Swasth India team, Union Health Minister Dr Mansukh Mandaviya, HAD said that combating a disease like SCA requires timely, systematic and a focused effort, which India is making. Talking about the mission, Dr Mandaviya said,
Italy and Japan are free of Sickle Cell disease. Why can’t India do it? With this thought in mind, we have established NSCEM. Under the mission, the government has decided to screen seven crore tribal populations residing in the 278 districts in 12 states in the next three years.
What is sickle cell disease and why is it prevalent among the tribal population? What are the interventions needed to achieve the 2047 goal of eradicating the disease? Banega Swasth India does a deep dive on one of the major initiatives of the government announced this year by speaking with Padma Shri Dr Dhananjay Diwakar Sagdeo, Hematologist and Chief Medical Officer Swami Vivekananda Medical Mission, Dr Sudam Kate, Founder-Director of Sudam Kate Research Foundation, Maharashtra, and Dr Anuradha Shrikhande, President, Sickle Cell Association, Nagpur.
What Is Sickle Cell Anaemia?
Sickle Cell Anaemia (SCA) is an inherited blood disorder marked by defective haemoglobin, Dr Sagdeo explained. It inhibits the ability of haemoglobin in Red Blood Cells (RBCs) to carry oxygen to all parts of the body, which further causes the red blood cells to become misshapen and break down. Explaining the disease further, the health expert said,
The disease is inherited from a defect in the gene. Scientifically explaining, it is caused by a genetic variant of human haemoglobin called the sickle haemoglobin (Hb S). Normally, the haemoglobin variant humans carry is called haemoglobin A (Hb A). Individuals who have sickle cell anaemia inherit two faulty haemoglobin genes, i.e., Hb S, from each parent.
Dr Sagdeo said that individuals who inherit just one defective gene (only one parent carrying Hb S and other with Hb A) are comparatively born healthier but still have a 25 per cent chance of developing the disease.
Why Is Sickle Cell Anaemia Prevalent Among The Tribal Population?
Dr Sudam Kate, who has been studying Sickle Cell Anaemia for the past 40 years in Maharashtra, explained why the disease is more prevalent among the tribal population,
Historically, the tribal populations have lived in heavily forested areas of India, where there was a higher risk of malaria infection. The tribals were endemic to malaria for years, leading to several deaths, thus, as an evolutionary trait, their red blood cells were becoming sickle-shaped than the normal round-shaped. That is how the Sickle Cell Anaemia gene was introduced into the population and led to their high susceptibility to the disease and it is being carried from generation to generation.
Treatment and Prevention For Sickle Cell Anaemia
There is no cure for Sickle Cell Anaemia that is within the reach of a common man, Dr Sagdeo said. Patients undergo bone marrow transplant, but that is effective only for patients under the age of 16 and not for those above that age group. Gene therapy is another plausible treatment, but as of now, it is only available in the US, Dr Sagdeo said.
However, Hydroxyurea is a medication that is being provided to patients experiencing repeated episodes of acute chest syndrome, the health expert said. The medication has also been suggested by the Union Health Ministry.
Interventions Required To Eliminate Sickle Cell Transmission And Work Towards Achieving The 2047 Mission
Dr Anuradha Shrikhande, President of the Sickle Cell Association Nagpur, talked about raising awareness about the disease and conducting pre-marriage counselling as the major interventions to prevent a person being born with Sickle Cell Anaemia.
Dr Sudam Kate laid emphasis on widespread screening (prenatal and screen of up to 40 years of age) and surveillance to contain the transmission of the disease to future generations. Community intervention is needed to educate the tribals about Sickle Cell Anaemia, the health expert added. Dr Kate said the premarital counselling must be made available at the primary healthcare centres, to reach to the last mile.
Dr Sagdeo, on the other hand, advised the government to make the Bone Marrow Transplant (BMT) available and affordable at the All India Institute of Medical Sciences (AIIMS).
The suggestions listed down by the experts are in line with the National Sickle Cell Anaemia Elimination Mission (NSCEM). Under NSCEM, the government has said that they will drive their focus towards educating tribals, increasing surveillance, early diagnosis, universal screening, and pre-marital counselling, to achieve the goal of elimination of Sickle Cell Anaemia by 2047.
The mission is being implemented in 17 high prevalence states of Gujarat, Maharashtra, Rajasthan, Madhya Pradesh, Jharkhand, Chhattisgarh, West Bengal, Odisha, Tamil Nadu, Telangana, Andhra Pradesh, Karnataka, Assam, Uttar Pradesh, Kerala, Bihar, and Uttarakhand.
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