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What is sickle cell disease? All you need to know

What is sickle cell disease? All you need to know

India Today5 hours ago

On June 19, we recognise World Sickle Cell Day each year to raise awareness of sickle cell disease (SCD), a serious genetic blood disorder that impacts millions of people worldwide. This day provides an opportunity to educate local communities about the challenges patients face, the health care they need, early screening, and more.In 2025, the theme of the day is "Early Detection and Equitable Care for All", with a specific attention to early detection of sickle cell disease and having access to treatment no matter the geographical location where a person lives. There is hope on the horizon with medical research providing new avenues for the management of the disease, particularly for children and underserved populations.advertisementWHAT IS SICKLE CELL DISEASE?Sickle cell disease is a hereditary disorder of the body that changes the shape of a person's red blood cells (normally round and flexible) to a shape of a sickle or a crescent moon. The sickle-shaped red blood cells can bind together, restricting blood flow and resulting in pain and other complications. Sickle cell disease is a genetic disease, meaning a child would inherit the disease if both parents carried the faulty gene.
CAUSES OF SICKLE CELL DISEASE:Sickle cell disease is caused by a mutation in the gene that tells the body how to make haemoglobin—the protein in red blood cells that carries oxygen.It is inherited, not contagious.If both parents carry the sickle cell trait, there is a 25% chance their child will be born with the disease.advertisementCOMMON SYMPTOMS:Symptoms can vary, but common signs include:Episodes of severe pain, called sickle cell crisesFatigue and weakness due to anaemiaSwelling in hands and feetFrequent infectionsDelayed growth in childrenVision problems due to blocked blood vessels in the eyesSymptoms often begin in early childhood, and regular medical care is essential for managing the condition.WHY EARLY DETECTION IS IMPORTANT:A simple blood test for early diagnosis will enable doctors to start treatment and prevent the consequences of ill health. In India, the government has set up several programs for universal testing and screening, especially in tribal and rural areas where the disease is more prevalent.ADVANCES IN TREATMENT:Although there is no universal cure yet, treatment options continue to improve:Hydroxyurea is a drug that decreases both pain episodes and the incidence of blood transfusions.Blood transfusion is required to treat severe anaemia and to prevent stroke in children.Bone marrow and stem cell transplants are a potential cure, although limited availability and cost significantly restrict their use.Gene therapy, yet to be proven as an effective treatment option, is underway and is producing remarkable outcomes. Hopefully, gene therapy will provide long-term relief.World Sickle Cell Day 2025 reminds us all that awareness, testing and equal opportunity to care can make a difference. More knowledge about sickle cell disease and advances in care means that people can manage the disease more effectively, improving the length and quality of life for those affected. Governments, doctors and communities must engage and work collaboratively to ensure that no one is left behind in the fight against this lifelong condition.

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Tribal Affairs Min partners with AIIMS for sickle cell treatment
Tribal Affairs Min partners with AIIMS for sickle cell treatment

United News of India

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  • United News of India

Tribal Affairs Min partners with AIIMS for sickle cell treatment

New Delhi, June 19 (UNI) In a major initiative to eradicate Sickle Cell Disease (SCD) by 2047, the Union Ministry of Tribal Affairs has plans to establish excellence centres across 15 leading hospitals and also collaborate with AIIMS, Delhi to launch a national competition aimed at developing new treatment options for this debilitating genetic blood disorder. With only one drug currently available for SCD management, this collaboration seeks to address the critical need for more effective therapies to combat the disease, which causes chronic anaemia, severe pain, organ damage, and a significantly reduced life expectancy, particularly among India's tribal populations. "The proposals selected in the competition will receive funding of up to Rs 10 crore for drug development. In parallel, the Ministry is establishing Centers of Competence (CoC) across 15 leading hospitals, including AIIMS, to enhance diagnostic and care facilities for the affected tribal communities," said Union Minister of State for Tribal Affairs, Durgadas Uikey, during the World Sickle Cell Day event at AIIMS here on Thursday. Following the Prime Minister's announcement on July 1, 2023 to eliminate Sickle Cell Anemia from India by 2047, the Ministry has already initiated nationwide screening and testing programs aimed at combating the disease. Vibhu Nayar, Secretary of the Ministry of Tribal Affairs, emphasised that the CoCs aims to offer state-of-the-art diagnostic and management services for SCD, including ante-natal care. These centers, which will be operational by November 2023, will also facilitate referrals and provide specialized care to patients across the country. Nayar further stated that one of the proposed centers may serve as a national reference point for tribal health at AIIMS, Delhi which could aid hospitals in tribal-dominated regions and explore the causes of malnutrition and its potential links to genetic factors. 'One national specialize reference center on tribal health could be set up in AIIMS New Delhi which could provide assistance to the hospitals located in tribal dominated areas in different states and districts, it could provide clues why malnutrition is occurring despite several measures, it has to examine whether it's the genetic or any other reason,' the secretary added. At the event, Minister Durgadas Uikey also interacted with patients of sickle cell anaemia and their families. As people from different parts of the country are currently residing and receiving treatment in Delhi, the Minister assured them of all support of Central and state governments. He also assured them about the free availability of all medicines associated with the management of SCD. UNI AJ RKM

Govt announces Rs 10-cr prize for new drug to treat sickle cell disease
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Govt announces Rs 10-cr prize for new drug to treat sickle cell disease

The government on Thursday announced an award of Rs 10 crore to develop a drug for the treatment of sickle cell disease, which disproportionately affects India's tribal populations. Sickle cell disease is a group of inherited blood disorders that affect haemoglobin, causing red blood cells to become sickle-shaped and block the blood flow, which can lead to serious complications such as stroke, eye problems and infections. Prime Minister Narendra Modi launched the National Sickle Cell Anaemia Eradication Mission on July 1, 2023, with the aim of eradicating the disease by 2047. The government aims to screen seven crore people up to 40 years of age as part of the mission. At an event to mark World Sickle Cell Day here, Union Minister of State for Tribal Affairs Durgadas Uikey announced the institution of the Bhagwan Birsa Munda Prize for the development of a drug to treat the disease. The minister said there is only one drug available as of now for the management of the disease. There is currently no option to select a drug from a range of alternatives based on the patient's body conditions and severity of the disease. He said this problem is worsened in special situations like pregnancy or the presence of other serious medical conditions. Therefore, there is an urgent need to develop a new drug. The tribal affairs ministry, in collaboration with the AIIMS-Delhi, will undertake a competition for the development of the drug. The selected proposal will be funded up to Rs 10 crore, Uikey said. He also said the ministry will establish a Centre for Tribal Health and Research Institute under the AIIMS-Delhi. This centre will also have outpatient and inpatient facilities for providing the highest-quality medical care to tribal people. Provisions for seamless referrals from peripheral hospitals in tribal-dominated areas will be explored, he said. The centre will also guide the government in policy formulation. The minister said a postgraduate course in tribal medicine will also be designed. This will help address the long-standing health inequities faced by tribal communities, who often remain underserved due to geographical, socio-cultural and systemic barriers, he said. This specialised course will be designed to develop a cadre of medical professionals with contextual knowledge, clinical skills and public health competencies tailored to tribal settings.

Decode, Detect, Defeat: National Campaign Puts Spotlight on Sickle Cell Disease
Decode, Detect, Defeat: National Campaign Puts Spotlight on Sickle Cell Disease

Hindustan Times

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Decode, Detect, Defeat: National Campaign Puts Spotlight on Sickle Cell Disease

India's ambitious drive to eliminate Sickle Cell Disease (SCD) by 2047 is gaining momentum this month with the launch of a national media campaign titled 'India's Fight Against Sickle Cell: From Awareness to Action.' The campaign, led by and HealthShots in partnership with Novo Nordisk and .. The campaign begins in June to mark the significance of World Sickle Cell Day, observed globally on June 19th. To honour this milestone and deepen the national conversation, the initiative will culminate in a high-level conclave on June 30th, 2025, at The Lalit, New Delhi. One of India's less widely recognised public health priorities Sickle Cell Disease remains one of India's most urgent yet under-recognised public health burdens. According to the Ministry of Health and Family Welfare (MoHFW), more than 20 million people in India carry the sickle cell gene, with an estimated 1.5 lakh children born annually with the disease. Source: Sickle Cell Disease (SCD) is an inherited blood condition that changes the shape of red blood cells, which can sometimes affect how oxygen flows through the body. While it may lead to episodes of discomfort and certain health challenges over time, many people with SCD live full and active lives, especially with early diagnosis, regular care, and the right support systems in place. In India, the condition is more commonly found in specific geographic belts, including parts of Gujarat, Maharashtra, Rajasthan, Madhya Pradesh, Jharkhand, Chhattisgarh, West Bengal, Odisha, Tamil Nadu, Telangana, Andhra Pradesh, Karnataka, Assam, Uttar Pradesh, Kerala, Bihar, Uttarakhand Increasing access to screening and care in these regions is helping to bridge longstanding gaps and offer better outcomes for individuals and families alike. Source: According to data from the Indian Council of Medical Research (ICMR) and National Health Mission (NHM), carrier prevalence in tribal districts ranges from 10% to 40%, with disease prevalence among newborns at 1–2% in high-burden NHM — National Sickle Cell Anaemia Elimination Mission Guidelines (2023) The Government of India launched the National Sickle Cell Anaemia Elimination Mission (NSCAEM) in July 2023, targeting 7 crore screenings by 2027 and aiming for disease elimination by 2047, in line with India's 100 years of independence goals. Putting Patient Voices at the Heart A core goal of 'India's Fight Against Sickle Cell: From Awareness to Action' is to centre patient voices and reduce social stigma through storytelling and journalism. The campaign will bring forward the lived experiences of those affected by SCD—patients, families, caregivers and frontline health workers—highlighting both the challenges and the hope that early diagnosis and proper care can provide. Throughout the campaign, audiences—including healthcare professionals, public health officials, policymakers, researchers, civil society organisations, entrepreneurs, start-ups in health innovation, educators, and the wider public—will hear from individuals across different regions of India who have navigated the realities of this lifelong condition. 'India must see Sickle Cell Disease not as an isolated tribal issue, but as a broader national priority. Given limited awareness around SCD among patients and the public, several challenges remain, including a lack of trained healthcare professionals in rural areas and insufficient coordination among various stakeholders. We are happy to collaborate with Hindustan Times and Novo Nordisk on this national campaign as it fosters better collaboration among the healthcare community, state governments, and non-governmental organisations to achieve the goal of eradicating SCD as a public health issue by 2047,' Prime Minister's Vision. says Gautam Dongre – National Secretary, National Alliance of Sickle Cell Organisations (NASCO). Driving cross-sector collaboration Novo Nordisk India, the campaign sponsor, is supporting this effort to propel the government's national mission by promoting active engagement among stakeholders, including central & state governments, public officials & policymakers, government medical institutions, healthcare professionals, patient groups & NGOs, start-ups & entrepreneurs and broader cross-sector collaboration. "In India, 1.4 million adults and children live with sickle cell disease. Among them, the tribal communities are the worst affected due to poorer health conditions, greater burden of morbidity and mortality and limited access to healthcare services in comparison to the rest of the population. We, at Novo Nordisk, are committed towards strengthening the Indian healthcare infrastructure for early detection and diagnosis of this life-threatening disease. Eliminating SCD will require sustained partnerships between government, healthcare, civil society, and industry. As a first step, Novo Nordisk Education Foundation, in collaboration with We are proud to support this campaign that brings national attention to SCD and helps advance health equity," said Vikrant Shrotriya, Managing Director, Novo Nordisk India. About the campaign Over June, 'India's Fight Against Sickle Cell: From Awareness to Action' will deliver: The World SCD Day event on June 21st, 2025, at The Lalit, New Delhi, will bring together policy leaders, healthcare professionals, patients, and public health advocates to chart the way forward. As India marks nearly 16 years since the United Nations first recognised World Sickle Cell Day in December 2008, with the first global observance held on June 19, 2009, this campaign seeks to accelerate national progress. Under India's National Sickle Cell Anaemia Elimination Mission, the country has set a target to screen approximately 7 crore individuals by 2026 as a milestone toward broader elimination goals for 2047. To date, more than 42 million individuals have already been screened, underscoring the momentum of this public health effort. With a unified national effort — and empowered patient voices leading the conversation — the path to defeating SCD in India is clearer than ever. Sources 1. National Sickle Cell Anaemia Elimination Mission GuidelinesPublished by: Ministry of Health and Family Welfare (MoHFW), Government of IndiaAccess via: National Health Mission Portal 2. UN General Assembly Resolution Recognising World Sickle Cell DayDocument Title: A/RES/63/237: Recognition of World Sickle Cell DayAdopted: December 22, 2008Link: 3. Press Information Bureau — Launch of India's National Sickle Cell Anaemia Elimination MissionDate: July 2023Summary: Official announcement of the mission by Hon'ble PM Shri Narendra Modi in Shahdol, Madhya PradeshLink: 4. Press Information Bureau — Screening Progress UpdateDate: March 2024Summary: Over 4.2 crore individuals screened under the missionLink: 5. Indian Council of Medical Research (ICMR) – Annual Reports on Sickle Cell BurdenAgency: ICMRSummary: Includes region-wise prevalence data, screening challenges, and diagnostic researchAccess via: to relevant year-specific annual reports on tribal health or hemoglobinopathies) IN25BRO00002This is a disease awareness article by Novo Nordisk India Private Limited. This does not replace medical advice. For more information, please reach out to your medical registered medical practitioner. Note to the Reader: This article has been produced on behalf of the brand by HT Brand Studio and does not have journalistic/editorial involvement of Hindustan Times. The information does not constitute medical/health advice. Readers are strongly advised to consult a registered medical practitioner.

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