Latest news with #SCD
The Hindu
12 hours ago
- Health
- The Hindu
Sickle Cell patients growing in tribal pockets of undivided Visakhapatnam district, says expert
Sickle Cell Disease is prevalent among the tribal people, particularly those living in the Agency areas of Alluri Sitharama Raju district, according to Paripandla Sridevi, an Associate Professor in the Central Tribal University, Vizianagaram. An estimated 1% of the total population has SCD, and 4% are carriers of the sickle cell trait, Prof. Sridevi said on the eve of World Sickle Cell Day, which is observed on June 19 every year. Prof. Sridevi has been conducting research in the tribal areas of the undivided Visakhapatnam district in the North Andhra region, for the past three years. The research is being conducted as part of the ICMR–National Task Force Project, which has been going on for the past seven years. The SCD is caused by sickle cell gene, a defective one which looks like a sickle. People affected with the disease are born with two sickle cell genes—one from each parent. Those born with one sickle cell gene, called sickle cell trait, are generally healthy, but they can pass on the defective gene to their children, she said. 'Initially, Prof. Sudhakar of the Department of Human Genetics, Andhra University, has worked on the project. Then I worked on the same project in Madhya Pradesh. I have been working on the project for the past three years at Gannela, Madagada and Paderu of ASR district,' Prof. Sridevi told The Hindu. 'I have noticed that SCD patients are unable to get blood transfusions and hydroxyurea on time due to poor amenities in the tribal areas. Stigma is attached to the disease as many tribal people think it is a curse. Some others dismiss it as common anaemia. We train ASHA workers to create awareness among the tribals on the need to opt for timely treatment for SCD and to dispel the myths,' she said. Prof. Sridevi said such research projects act as a bridge between the tribal people and the government as they bring the issues to the notice of the authorities concerned. 'We want the treatment facilities of SCD to be improved. We counsel tribal people about the dangers associated with marriages between close relations, a common practice in the Agency areas,' she said. Quoting from data provided by ASR district DM&HO Dr. Jamal Basha, Prof. Sridevi said that 4,10,380 have been screened for sickle cell anaemia in the undivided Visakhapatnam district as on June 18. Among them, 1,488 were identified as SCD positive, 12,599 carriers and 3,80,665 were negative. The government has made arrangements for the necessary medicines and nutrition for the patients with the goal completely eradicating SCD in Andhra Pradesh by 2047.
Time of India
15 hours ago
- Health
- Time of India
City AIIMS to get CoE status for research on sickle cell anaemia
1 2 Bhubaneswar: AIIMS Bhubaneswar is set to be accorded the status of Centre of Excellence (CoE) for management and research of sickle cell disease (SCD), announced Union tribal affairs minister Jual Oram during the World Sickle Cell Awareness Day celebration at AIIMS Bhubaneswar on Thursday. "The Centre of Excellence tag will further strengthen AIIMS Bhubaneswar's capabilities in advanced research and quality treatment in sickle cell disease," said Oram. He said the govt is committed to eradicating sickle cell anaemia by 2047. "So far, 5.79 crore people were screened across the country. Among them, 5.55 crore tested negative, 16.38 lakh were identified as carriers, and 2.1 lakh were diagnosed with the disease," he added. AIIMS Bhubaneswar currently treats more than 700 registered SCD patients, over 500 of whom are in the 0 to 19 age group. "The institute offers regular diagnostic services, treatment, and carrier screening, including for extended family members of affected persons," said AIIMS Bhubaneswar executive director Dr Ashutosh Biswas. He said the institute also provides pre-natal diagnostic services to detect conditions like Down syndrome, neural tube defects, thalassaemia, and sickle cell anaemia within the first 20 weeks of pregnancy. "If both parents are carriers, there is a 25 per cent chance that the child may be affected," he added. During this visit, Oram toured various facilities of the institute and interacted with SCD patients and their family members. He also participated in a review meeting and a scientific session focused on sickle cell disease. "Facilities at AIIMS Bhubaneswar also include exchange transfusion for patients experiencing stroke or undergoing major surgeries. Furthermore, newborn screening for genetic metabolic disorders such as congenital hypothyroidism and congenital adrenal hyperplasia is actively being carried out," said the national institute in an official statement. Bhubaneswar: AIIMS Bhubaneswar is set to be accorded the status of Centre of Excellence (CoE) for management and research of sickle cell disease (SCD), announced Union tribal affairs minister Jual Oram during the World Sickle Cell Awareness Day celebration at AIIMS Bhubaneswar on Thursday. "The Centre of Excellence tag will further strengthen AIIMS Bhubaneswar's capabilities in advanced research and quality treatment in sickle cell disease," said Oram. He said the govt is committed to eradicating sickle cell anaemia by 2047. "So far, 5.79 crore people were screened across the country. Among them, 5.55 crore tested negative, 16.38 lakh were identified as carriers, and 2.1 lakh were diagnosed with the disease," he added. AIIMS Bhubaneswar currently treats more than 700 registered SCD patients, over 500 of whom are in the 0 to 19 age group. "The institute offers regular diagnostic services, treatment, and carrier screening, including for extended family members of affected persons," said AIIMS Bhubaneswar executive director Dr Ashutosh Biswas. He said the institute also provides pre-natal diagnostic services to detect conditions like Down syndrome, neural tube defects, thalassaemia, and sickle cell anaemia within the first 20 weeks of pregnancy. "If both parents are carriers, there is a 25 per cent chance that the child may be affected," he added. During this visit, Oram toured various facilities of the institute and interacted with SCD patients and their family members. He also participated in a review meeting and a scientific session focused on sickle cell disease. "Facilities at AIIMS Bhubaneswar also include exchange transfusion for patients experiencing stroke or undergoing major surgeries. Furthermore, newborn screening for genetic metabolic disorders such as congenital hypothyroidism and congenital adrenal hyperplasia is actively being carried out," said the national institute in an official statement.
United News of India
a day ago
- Health
- 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
Hindustan Times
a day ago
- Health
- Hindustan Times
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.
The Hindu
a day ago
- Health
- The Hindu
Centre plans to set up National Tribal Health and Research Institute under AIIMS, New Delhi
The Union government is planning to set up a National Tribal Health and Research Institute (NTHRI) under the All India Institute of Medical Sciences (AIIMS) in New Delhi and there are also plans to hold a competition for the development of drugs to manage Sickle Cell Disease, especially prevalent among certain tribal populations in the country. These announcements were made by Minister of State for Tribal Affairs Durgadas Uikey on Thursday (June 19, 2025) at an event to mark the World Sickle Cell Disease (SCD) Day at the AIIMS campus here. Mr. Uikey said the competition would be for the Bhagwan Birsa Munda Prize and the winning drug development project would get up to ₹10 crore in funding for taking the drug forward. At the event meant to mark awareness of SCD, government officials said the Ministry had sanctioned Centre of Competence (CoC) in 15 tertiary care hospitals, including AIIMS, which were meant to provide 'state-of-the-art diagnostics for and management of SCD, including ante-natal diagnosis.' Course in 'tribal medicine' Mr. Uikey said there was also a proposal to offer a postgraduate course in 'tribal medicine', which 'aims to address the long-standing health inequities faced by tribal communities'. The government, in its statement, said the 'specialised course' would be designed to develop a cadre of medical professionals with contextual knowledge, clinical skills and public health competencies 'tailored to tribal settings'. Ministry officials told The Hindu that the government's efforts to develop a gene therapy for treating SCD were 'progressing on the right path' and was in the trials stage for the time being. In a statement issued on Thursday (June 18, 2025), the Union government said there was only a single drug available for the management of SCD. 'There is currently no option to select a drug from a spectrum of drugs options for management of a patient, depending on his/her body conditions and severity of the disease.' 'This problem gets augmented in special situations such as pregnancy, other serious medical conditions etc. Therefore, there is an urgent need for the development of a new drug/s for the management of the disease,' it said on the announcement for the Bhagwan Birsa Munda Prize, adding that the competition for this drug development would be held by the Ministry in collaboration with AIIMS Delhi. Guide in policymaking On the setting up of the NTHRI, the government said this institute was meant to be an 'advanced research centre for diseases particularly predominant among tribal people'. It would be expected to guide the government in policymaking in addition to its functions as an outpatient/inpatient facility for providing 'highest quality medical care to tribal people'. Currently, the Tribal Affairs Ministry's guidelines for managing SCD cases amongst tribal populations entailed a process involving screening, management and counselling. Under the government's programme run in collaboration with the Health Ministry, over 5.8 crore people had been screened for SCD across the 17 target States for SCD mission. Of these, about 16.38 lakh people or close to 2.82% were found positive for SCD traits and a total of about 2.1 lakh people were found to be having Sickle Cell Disease. The proportion of people identified with SCD comprise about 0.36% of total screenings.
