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Hindustan Times
2 days ago
- Health
- Hindustan Times
The impact and driving force behind India's National Sickle Cell Anaemia Elimination mission
In just over a year since its launch, India's National Sickle Cell Elimination Mission (NSCEM) is already demonstrating a notable impact in the nation's fight against Sickle Cell Disease (SCD). This public health initiative, active in 278 districts across the country, has rapidly transformed the approach to both diagnosis and management of SCD. With a focus on tribal populations which are more susceptible to the disease and an ambitious target to eliminate SCD as a public health problem by 2047, the mission has achieved unprecedented reach, which is evident in its screening numbers. The initiative aims to eliminate Sickle Cell Disease by 2047. According to government statistics, more than 42 million people were screened for SCD in the first year. This figure, in comparison, is over 10 times the annual number of babies screened in the universal new born screening program in the United States (approximately 3.6 million) and 70 times more. This daily identification rate is roughly equivalent to the total number of new births affected over an entire year in the United Kingdom. Furthermore, approximately 2,500 carriers of the sickle cell trait are identified daily. While these individuals do not present immediate clinical concerns, their identification is critical for future prevention. These carriers are informed about the disease and offered premarital screening and genetic counselling to help prevent the transmission of SCD to future generations. All screened individuals are given a standardised, color-coded identity card that visually indicates their sickle cell status and reproductive risk in an accessible format. The mission's multi-pronged approach extends beyond screening to encompass comprehensive care and counselling and also future research. This includes: Prevention strategies Prevention of serious infections has played a key role in SCD management. Immunisations against Streptococcus pneumoniae and Haemophilus influenzae have improved survival rates and brought down deaths caused by the pneumococcal disease. The government is also carrying out mass screenings and those at high-risk are being counsel Prenatal screening For couples at risk, prenatal screening for SCD using advanced techniques like chorionic villus sampling and amniocentesis, is made available at Government of India's expense. This empowers families to make informed decisions. Efforts are being made to improve access to these services in geographically remote areas also. Social support and legal protection Recognising the challenges faced by individuals with SCD, the Rights of Persons with Disabilities (RPWD) Act of 2016 includes thalassemia, haemophilia, and SCD among the three haematological disorders covered. This act provides vital protections and entitlements for those with 40 per cent or more disability, including: · Accommodations at school and work, such as flexible timings and extra leave to allow for medical care · Relaxation in attendance requirements and additional time for timed examinations · Financial assistance for medical expenses · Consideration for employment opportunities in proximity to comprehensive care facilities The Act also mandates non-discrimination, upholds the right to equality and life with dignity, offers incentives for employers to hire individuals with disabilities, and provides preferences in admission to higher education courses. Advancements in disease-modifying therapies Hydroxyurea: A widely used disease-modifying therapy, Hydroxyurea (HU) has been used in patients with SCD in India since 2008. HU is dispensed free of charge through government health systems and is commercially available at low cost. It is manufactured domestically by several pharmaceutical companies, ensuring ready availability. An oral liquid formulation, stable at room temperature is also being manufactured in India, offering a significant advantage for treating children in remote, tropical regions. HU has proven effective in reducing painful episodes, blood transfusion needs, and hospitalisation rates. It is currently being given to all patients with sickle cell disease starting at two years of age. Research is ongoing to assess the efficacy of different dosages and dose escalation strategies. Advancements in curative therapies Hematopoietic Cell Transplantation: Hematopoietic Cell Transplantation (HCT), often referred to as bone marrow transplant, has been gaining popularity in India over the past four decades. The country now has 114 HCT centres, with 89 reporting results to a bone marrow transplant registry. Clinical research India is emerging as a hub for SCD clinical trials, with approximately 47 trials registered in the Clinical Trial Registry India for SCD. These trials encompass a range of interventions, including HU, haploidentical transplant conditioning regimens, and novel drug candidates pyruvate kinase activator, fetal haemoglobin (HbF) inducers. With large numbers of patients with SCD and medical services in private and academic hospitals, India has the potential to serve as a source for conducting interventional clinical trials. Looking into the future Announced by PM Narendra Modi in 2023, NSCEM is a comprehensive effort to improve the care of all SCD patients and lower disease prevalence. Some of its core pillars include: · Increasing awareness for SCD and pre-marital genetic counselling · Prevention via universal screening and early detection · Providing continuous care across primary, secondary, and tertiary healthcare levels · Strengthening tertiary and quaternary healthcare facilities · Encouraging community adoption and providing support systems The progress of the mission is meticulously tracked and updated in real-time on a public online portal, guiding resource allocation at district, state, and national levels. Furthermore, recognising the potential of transformative therapies, the Government of India has made significant investments in research to develop gene therapies for SCD domestically. While concerns about feasibility and cost in low and middle-income countries remain, India's proactive research support comes as a glimmer of hope for future curative solutions. Note to the Reader: This article has been produced on behalf of the brand by HT Brand Studio and does not have the journalistic/editorial involvement of Hindustan Times. The information provided does not constitute medical advice. Please consult a registered medical practitioner for health-related concerns.
Hindustan Times
3 days ago
- Health
- Hindustan Times
India's fight against Sickle Cell Disease
Every year, over 3,00,000 infants are born with Sickle Cell Disease (SCD) worldwide, a genetic blood disorder which brings serious health complications. The country holds the second-highest burden of the disorder globally. An estimated 20 million Indians are affected by SCD making it a public health concern that needs urgent attention. The condition gains seriousness because of the intensity of the disease – as many as 50-90 per cent of the young patients suffering from it do not even see their fifth birthday. Sickle Cell Disease affects millions in India, with a high mortality rate among young patients. The government mission Prioritising the health of tribal communities and recognising SCD as a serious public health challenge, the Government of India launched a National Sickle Cell Elimination Mission (NSCEM) in July 2023 with the goal to decimate the disease before the country celebrates Amrit Kaal in 2047. One of the main challenges in SCD is early detection, which is covered by one of the key objectives of the mission – universal screening. The mission also promotes community-based genetic counselling. This helps families understand the risks and prevent the transmission of SCD to future generations. In addition, the mission includes awareness and education campaigns for high-risk communities. A key part of this is a national media campaign titled 'India's Fight Against Sickle Cell: From Awareness to Action', led by and HealthShots in partnership with Novo Nordisk India. Flagged off on June 19, it will culminate in a conclave – National Sickle Cell Summit 2025 – at The Lalit, New Delhi on June 30, 2025. These initiatives are important for reducing stigma surrounding the disease, promoting better understanding, and encouraging timely medical intervention. The plan also involves strengthening health infrastructure, especially at the primary healthcare level, by improving diagnostic and treatment capabilities to improve access to care and free distribution of essential medicines like hydroxyurea and folic acid through public health centres. Finally, to support ongoing improvements, the government is committed to establishing a national SCD registry and investing in research to advance disease management and care practices. The inclusion of sickle cell screening under national health missions and the involvement of frontline health workers like ASHAs and ANMs in patient follow-ups demonstrate a growing commitment to early detection and continuous care. What is SCD? SCD is a chronic genetic disorder that alters the shape and function of red blood cells in the body, causing them to become sickle shaped, stiff, sticky. These abnormal cells can block blood flow, preventing oxygen from reaching tissues. This can lead to sudden and severe episodes known as 'pain crises' which can last for hours or even days in certain cases. Those with SCD also contend with ongoing health complications like chronic anaemia, joint pains, delayed growth, shortness of breath, and extreme fatigue. Over time, virtually every organ in the body can be affected, leading to issues such as stroke, kidney and liver dysfunction, vision problems and frequent infections. The disease is most common among tribal and other ethnic groups in specific regions, commonly known as the 'sickle cell belt', which include parts of Gujarat, Maharashtra, Rajasthan, Madhya Pradesh, Jharkhand, Chhattisgarh, West Bengal, Odisha, Tamil Nadu, Telangana, Andhra Pradesh, Karnataka, Assam, Uttar Pradesh, Kerala, Bihar and Uttarakhand. The way forward Since the launch of the campaign, about 5.85 crore individuals have already been screened for SCD. The figure reflects the momentum of the campaign, which is now operational in 17 states and 278 districts. Screening initiatives have been flagged off in schools and communities to identify those at risk and health workers are being trained to identify symptoms and counsel affected families. The government aims to cover about 7 crore individuals aged between 0 and 40 years across 278 districts in India. This screening is particularly focused on tribal districts, identified as high-risk for SCD, to ensure early and accurate identification of both individuals with the disease and carriers of the sickle cell trait and also improve the care and prospects of patients suffering from the disease. The program is being executed in a 'mission mode' as part of the National Health Mission (NHM) and its implementation partners include the Ministry of Health and Family Welfare (MoHFW), the Ministry of Tribal Affairs, Indian Council of Medical Research, State Governments and Tribal Health Departments. Note to reader: This article has been produced on behalf of the brand by HT Brand Studio and does not have the journalistic/editorial involvement of Hindustan Times. The information provided does not constitute medical advice. Please consult a registered medical practitioner for health-related concerns.
Hindustan Times
19-06-2025
- Health
- Hindustan Times
Mission to eliminate sickle cell anaemia by 2047
'Sickle Cell Disease is a disease that impacts tribal sections of societies significantly. The government is committed to eliminate the disease before India celebrates its Amrit Kaal in 2047.' This is what Prime Minister (PM) Narendra Modi said while launching the National Sickle Cell Anaemia Elimination Mission (NSCEM) in Shahdol, Madhya Pradesh, on 1 July 2023. Late one summer afternoon in a remote village in Jharkhand, 16-year-old Asha sat under a neem tree, her textbooks in her lap. The youngest of five siblings from a tribal family, Asha had spent much of her childhood battling crippling bouts of pain that would leave her bedridden for days. It wasn't until a government screening camp reached her village that she learned the cause — sickle cell anaemia, a genetic blood disorder that had quietly stalked her community for generations. Asha's story is far from unique. Across India's tribal heartlands — from Jharkhand and Chhattisgarh to Gujarat and Maharashtra — thousands of young boys and girls like her are born with sickle cell disease (SCD), their lives shaped by an inherited condition that warps red blood cells and restricts oxygen flow. The disease brings severe pain, frequent infections, organ damage, and — all too often — an early death. For decades, in these isolated communities with limited healthcare access and low awareness, the burden of SCD remained largely hidden. India, home to the world's second-largest tribal population, accounts for more than 42,000 newborns with SCD every year — a grim reminder of a long-neglected public health challenge. In many tribal belts, the prevalence of the sickle cell trait ranges from 1% to 40%. Generations of consanguineous marriages and the historic presence of malaria, which once gave the sickle cell trait a survival advantage, only deepened the crisis. But change is now underway. The Government of India launched the National Sickle Cell Anemia Elimination Mission in 2023 — a bold effort to break this cycle of suffering. For young girls like Asha, this mission offers not just treatment — but hope. Driven by the ministry of tribal affairs and the ministry of health and family welfare, the mission is anchored in an ambitious goal: To eradicate SCD as a public health threat by 2047, in step with India's vision for Amrit Kaal. The strategy rests on universal screening, early detection, and community-driven awareness — reaching even the most remote villages of India's 17 high-burden states. Progress is already visible. More than one crore people have been screened since the mission began — a staggering feat in a landscape where health services often struggle to reach. In Asha's village, a simple solubility test, followed by a confirmatory HPLC analysis, revealed her condition early enough to start hydroxyurea therapy — reducing her painful episodes and allowing her to return to school. Critically, the mission integrates sickle cell care into the vast network of Ayushman Bharat Health and Wellness Centres, created through PM Modi's flagship health care vision. These community hubs — familiar and trusted by locals — now provide screening, counselling, and ongoing treatment. Health care workers like ASHAs and ANMs are not only delivering medicines but educating families about the disease and genetic counseling, equipping them with knowledge that was once absent. For tribal girls and women, the mission's impact is life changing. Maternal health outcomes, previously marred by frequent complications, are improving. Pregnant women with SCD now receive specialised care, reducing the risks of premature births and infant mortality. In states like Gujarat, nearly one lakh tribal women screened have already benefited from targeted interventions. Technology is also playing a vital role. Through smart cards and digital health records — accessible in local languages — families can track their health status and make informed decisions about marriage and childbirth, breaking the generational transmission of the disease. Community figures like Theresa Naik, an SCD patient turned ANM in Jharkhand, are becoming powerful advocates, inspiring others to come forward. Economically, the mission eases a heavy burden. Previously, tribal families often faced financial ruin from repeated hospital visits. Now, with the rollout of over three crore Ayushman Bharat digital cards, covering treatment up to ₹5 lakh, families can access free care — a crucial support in regions of endemic poverty. For Asha and her peers, the transformation is tangible. Once confined by illness, she now attends school regularly, dreams of becoming a teacher, and educates younger children about SCD in her village. As India approaches its centenary in 2047, the National Sickle Cell Anemia Elimination Mission stands as more than a health care initiative. It is a testament to empathetic governance — one that listens to the voices of its most marginalised citizens and acts with urgency. For India's tribal communities, it offers dignity, inclusion, and the promise of a healthier future. For girls like Asha, it means no longer living in the shadow of a disease they never chose — but stepping into the light of possibility. This article is authored by Tuhin A Sinha, national spokesperson, BJP.
