Latest news with #Haemophilia
Hans India
20-05-2025
- Health
- Hans India
Call for urgent need for genetic blood disorders awareness
Vijayawada: Minister for Health, Medical, and Family Welfare Y Satya Kumar Yadav on Monday stressed the critical need for increased public awareness regarding genetic blood disorders like Thalassemia, Sickle Cell Anaemia and Haemophilia. He was speaking at the inauguration of a two-day 'Orientation Training on Advanced Modalities in Diagnosis and Treatment of Blood Diseases' programme here on Monday, jointly organised by National Health Mission and Haemophilia Society, aims at equipping healthcare professionals with the latest knowledge in diagnosing and treating these conditions. The Minister highlighted the prevalence of these genetic disorders in the State, stating Andhra Pradesh has approximately 1,900 individuals suffering from Haemophilia, and roughly 2,100 people are battling Thalassemia, with a similar number affected by Sickle Cell Anaemia.' 'The State government is committed to identifying affected individuals and providing them with regular, free blood transfusions,' the Minister affirmed. He noted that five Integrated Centers for Hemoglobinopathy and Haemophilia (ICHH) across the State are already conducting preliminary diagnostic tests. Once a diagnosis is confirmed, the government provides free treatment and medicines. Beyond medical treatment, the State government is also providing a monthly pension of Rs 10,000 to those afflicted with Thalassemia, Sickle Cell Anaemia, and Haemophilia. Satya Kumar Yadav also provided an update on the ongoing Sickle Cell Anaemia screening programme in tribal areas, targeting individuals under 40 years old. 'Out of 1.9 million people requiring screening in these areas, we have screened 1.05 million so far, and the process is continuing,' he stated. He revealed that over 19,000 carriers have been identified, and 2,100 individuals have been diagnosed with the disease. Following genetic screening for Sickle Cell Anaemia, identification cards are being issued to those diagnosed. Minister Yadav also shared that Bhuvaneswari, wife of Chief Minister N Chandrababu Naidu, has undertaken a fundraising initiative in Vijayawada for Thalassemia patients. He mentioned the emergence of new technologies like gene editing, expressing confidence in the expertise of professors in government hospitals to provide high-quality services to economically disadvantaged patients. Dr Kameswara Prasad (APSACS APD in-charge), Dr Prasanna (Joint Director), Dr Devi (State Immunisation Officer), Dr NBSV Prasad (Secretary, Haemophilia Society Vijayawada Chapter), nodal officers for Sickle Cell Anaemia, nodal officers from the five ICHH centers, Dr Ramachandra Raju, Dr YD Ramarao, and other medical professionals also participated.
Hans India
19-05-2025
- Health
- Hans India
Rare and life-threatening pregnancy combated with surgery
Mangaluru: In a remarkable medical achievement, Lady Goschen Hospital successfully performed a surgical delivery on a pregnant woman suffering from a rare and potentially fatal blood disorder. The procedure not only saved the mother's life but also ensured the safe birth of her child, setting a record in maternal healthcare, according to hospital superintendent Durgaprasad M.R. The woman was born with Haemophilia (Von Willebrand's disease), a hereditary bleeding disorder. She had been receiving treatment at private hospitals since childhood. Haemophilia, characterised by a deficiency of Factor 8, plays a critical role in blood clotting. Without proper management, bleeding episodes can be severe and life-threatening. The specific Factor 8 replacement therapy must be administered continuously through injections, which are costly and not easily accessible. Unfortunately, such rare conditions pose significant challenges, especially when treatment options are expensive and limited. The plasma-derived Factor 8 injections are expensive, and many families find it difficult to afford ongoing treatment. During her pregnancy, the woman's family was unable to bear the high costs of the required medication, which put her at risk of severe bleeding or even maternal this critical scenario, the medical team provided confidential counselling, explaining the gravity of her condition. Despite various family constraints, the woman was determined to deliver her baby and become a mother. The doctors accepted the challenge and successfully performed the delivery, saving her life. Dr. Durgaprasad explained that he maintained continuous contact with the blood bank at Venlak Hospital and, with the support and approval of senior health department officials, arranged for the woman to receive the necessary injections weekly. This treatment was continued throughout her pregnancy. Twenty days before her delivery date, the woman was admitted to the hospital. The hospital ensured the availability of Factor VIII (8) injections—totalling 25,000 units—sourced and supplied by the government. The surgical team, comprising expert obstetricians and gynaecologists including Dr. Anupama Rao, Dr. Siriganesh, Dr. Namita, Dr. Sumeesh Rao, and Dr. Ranjan, along with anesthesia specialists, performed the Caesarean section successfully. Postoperative care was provided for ten days, after which the woman was discharged in good health and has since returned home.
India Today
02-05-2025
- Health
- India Today
How to give Haemophilia patients a fuller life
Haemophilia, a rare genetic bleeding disorder in which the blood doesn't clot properly, affects over 100,000 people in India. But shockingly, fewer than 19,000 of them are registered with the support group Haemophilia Federation of India. This means 80 per cent of Haemophilia patients suffer without proper bleeding episode robs patients of about 15 days of their lives. This clearly isn't just a medical issue. Dr S.P. Verma, head of haematology department, King George's Medical University, Lucknow, explains how Haemophilia robs people in India of their childhood, career, finances and hidden toll: Most bleeding disorders go undetected until severe damage occurs. Families face impossible choices when a bleed strikes: rush to a hospital or watch their loved one suffer. Emergency care alone costs significantly. On top of that, child patients miss weeks of school, falling behind their peers. Adults risk losing their jobs because they can't work consistently. Mothers often quit their careers to become full-time caregivers. The ripple effects can devastate entire paths: Most Haemophilia patients in India rely on 'on-demand therapy'—getting treatment only after bleeding starts. This reactive approach means more than 20 painful bleeds a year; about 12 of these bleeds happen in the joints, such as knees and elbows, each episode requiring hospitalisation and recovery time. The consequences are brutal: permanent joint damage by adulthood, chronic pain and limited Prophylaxis, the alternative treatment, can transform the situation. This preventive treatment involves regular infusions to stop bleeds before they occur. Globally, it's the gold standard that reduces bleeds by more than half and allows people to live near-normal lives. Children can play and study; adults can keep jobs. But in India, less than 4 per cent of patients can access prophylaxis due to the costs and lack of governmental don't lie: The difference between the two treatments is stark. On-demand patients could average 20-30 bleeds yearly, miss half their work or school days and face certain joint damage. Those on prophylaxis have an average of up to two bleeds yearly, attend 90 per cent of work/school, and maintain healthy joints. While prophylaxis costs more upfront, it's actually cheaper in the long term when you factor in emergency care costs and lost productivity.A smart future choice: Continuing with crisis care makes no economic sense. Every year of prophylaxis saves over 15 productive days per bleed. Early treatment prevents disabilities, which can cost the nation far more in welfare and lost productivity. India needs three urgent changes. First, include prophylaxis in all state health schemes. Second, negotiate bulk discounts to halve clotting factor costs. Third, train doctors and health workers to spot early signs, such as excessive bruising in isn't just stealing health but also India's human potential. We can keep paying the endless costs of disability and lost productivity or invest in solutions that give thousands of Indians their futures back. The choice is clear and the time to act is to India Today Magazine
Hans India
24-04-2025
- Health
- Hans India
India achieves breakthrough in gene therapy for haemophilia: Minister
New Delhi: Union Minister Dr Jitendra Singh on Thursday inspected various facilities at the BRIC-inStem facility and reviewed ongoing clinical trials in collaboration with premier medical institutes and hospitals, including the landmark first-in-human gene therapy trial for Haemophilia conducted with CMC Vellore. Calling it a 'milestone in India's scientific journey,' the minister hailed the institute's contributions to preventive and regenerative healthcare. During his visit, Dr Singh underscored the strategic importance of biotechnology in shaping India's future economy and public health infrastructure. 'This is not just about science—it's about nation-building,' he said, commending the Department of Biotechnology's (DBT) recent successes and its emergence from relative obscurity into national relevance. India's biotechnology sector has seen an extraordinary leap, growing 16-fold in the past decade to reach $165.7 billion in 2024, with a vision to touch $300 billion by 2030. The minister credited this growth to enabling policy reforms, including the recently approved BIO-E3 Policy that aims to boost economy, employment, and environment through biotechnology. 'We now have over 10,000 biotech startups compared to just 50 a decade ago,' he pointed out. He praised the creation of the Biotechnology Research and Innovation Council (BRIC) that unified 14 autonomous institutions under one umbrella. 'BRIC-inStem is at the cutting edge of fundamental and translational science,' he said, highlighting innovations like the germicidal anti-viral mask during the pandemic and the 'Kisan Kavach' that protects farmers from neurotoxic pesticides. 'The recent pandemic taught us that we must always be prepared. Facilities like this will help us stay a step ahead,' Dr Singh stated. The minister also praised the newly launched Centre for Research Application and Training in Embryology (CReATE), which addresses birth defects and infertility by advancing developmental biology research. 'With about 3 to 4 percent of babies born with some form of defect, this centre is vital for improving maternal and neonatal health outcomes,' he said. Calling for greater collaboration between scientific and medical institutions, he suggested that BRIC-inStem explore MD-PhD programmes, integrate more with clinical research, and enhance visibility through coordinated communication strategies.
