Latest news with #MaqsoodAlam
Time of India
01-06-2025
- Health
- Time of India
Rare disease patients continue to struggle despite govt policies
New Delhi: Despite the establishment of the National Policy for Rare Diseases (NPRD) in 2021 and a nationwide financial assistance programme, over 300 patients, predominantly children diagnosed with Lysosomal Storage Disorders (LSDs) such as Gaucher, Pompe, Fabry, MPS I, and II, are left without essential medical care. Tired of too many ads? go ad free now Among them, 70 are from Delhi. Since 2022, nearly 50 patients—including six from Delhi—have succumbed to these diseases. The Lysosomal Storage Disorders Support Society (LSDSS) reports that 50 patients across India exhausted their one-time funding under the policy. In Delhi, 7 patients are in critical condition due to financial constraints. Alishba Khan, a young girl battling Gaucher disease, illustrates the dire consequences of limited funding. Her father, Maqsood Alam, recounts the devastating decline in her health following the discontinuation of her medication in Aug 2024. "She suffers from severe abdominal pain, an enlarged spleen, bone pain, weakness, and decreased haemoglobin level. She is unable to attend school and requires constant supervision," Alam shared, his voice filled with anguish. Having already lost four children, he continually appeals to the High Court for continued treatment, fearing for Alishba's survival. While doctors at AIIMS offer significant support, they are constrained by limited funding, he said. Recognising the critical need, the Delhi High Court on Oct 4, 2024, directed the Ministry of Health and Family Welfare to extend funding beyond the Rs 50 lakh cap for patients with rare diseases. The court also mandated the establishment of a Rs 974 crore national fund for rare diseases for the fiscal years 2024-25 and 2025-26. Tired of too many ads? go ad free now However, the Ministry challenged this directive in the Supreme Court, where the matter remains pending. The Lysosomal Storage Disorders Support Society (LSDSS) has been vigorously campaigning for urgent action. In a recent appeal to Union Health Minister JP Nadda, the LSDSS highlighted that despite allocating over Rs 205 crore to 12 Centres of Excellence (CoEs)—including AIIMS Delhi and MAMC—more than 300 eligible patients remain untreated, and at least 50 patients have died while awaiting treatment. LSDSS National President Manjit Singh emphasised that many of these patients are children with conditions for which DCGI-approved therapies exist. " In the Budget Session of Parliament, the Ministry reaffirmed that no eligible patient should be denied life-saving therapy. However, the disconnect between funding and actual treatment on the ground continues to undermine this commitment," the letter stated. The society requested the ministry to direct CoEs to immediately accept eligible patients, ensure compliance with NPRD 2021 guidelines, prioritise patients with approved therapies, establish a rapid response task force for timely treatment initiation, and authorise continued treatment support beyond the Rs 50 lakh cap based on clinical merit. Singh acknowledged the govt's historic support for rare disease patients, requesting leadership to ensure this support translates into timely, life-saving access. Officials at MAMC explained that the crowdfunding portal has technical constraints preventing status updates from 'waiting for treatment' to 'under treatment' after therapy begins. Although the portal displays zero patients receiving treatment, in reality, 10 individuals out of 28 registered cases of LSDs are currently undergoing enzyme replacement therapy (ERT). The administration confirmed that treatment allocation strictly follows approved eligibility standards, considering ERT's expected clinical effectiveness and requires approval from the Centre of Excellence (CoE) committee, comprising various medical specialists. They noted that patients with significant neurological symptoms receive lower priority, as current evidence suggests ERT offers minimal benefits in such instances. The focus remains on treating patients with a higher likelihood of substantial clinical benefits. Regarding the national policy's one-time financial support limit of Rs 50 lakh per patient, the MAMC officials indicated their inability to provide treatment beyond this amount without specific instructions from senior authorities. When contacted, Dr Neerja Gupta from the genetic unit of paediatrics at AIIMS said she doesn't have the details on this matter offhand.
Hindustan Times
31-05-2025
- Hindustan Times
Alert loco pilot averts mishap, stops train sensing boulder on track
A bid to derail the train by placing a boulder on the railway track between Bhirpur and Meja railway stations of North Central Railway (NCR) was foiled by alert loco pilot of New Delhi-Rajendra Nagar Patna Tejas Rajdhani Express who stopped the train well in time late Thursday night. The train had to remain at the site for 10 minutes and was allowed to proceed after no suspect was found during the on-site investigation. RPF has registered a case against unknown miscreants in this connection, said NCR officials. As per reports, train number 12310 Tejas Rajdhani Express left for Patna from Delhi at 5.10 pm on Thursday evening. It reached Prayagraj Junction half an hour late at around midnight. The train then left the junction after a two-minute stop. As soon as it crossed Cheoki railway station, between Bhirpur and Meja Road railway station, the loco pilot Maqsood Alam heard an unusual sound of something rubbing against the railway track and stopped the train immediately. The control room was informed about this. As soon as the information was received, RPF and railway officials reached the spot. When the railway track was checked, a boulder was found there on the track. The train remained there for about 10 minutes before being allowed to proceed further. The railway team also investigated this matter on Friday, but it could not be known as to who had placed the boulder on the railway track. RPF is investigating this matter after registering a case, said officials. Confirming the incident, chief public relations officer (CPRO), NCR Shashikant Tripathi said that the loco pilot showed alertness and stopped the train. On the basis of his statement, RPF has registered a case against unknown miscreants. Photography of the incident site has been done. The railway team is now investigating the incident, he added. As per officials, as soon as the loco pilot heard the sound and informed the control room after stopping the train, assistant sub inspector of RPF Anil Kumar went to the spot for inspection. After this, a search operation was conducted from Meja to Bhirpur railway track. However, during this time, RPF did not see any suspicious person there. TThe train stood on the railway track from 12.37am to 12.47am. Finally, a case was registered against unidentified person under section 153 (endangering the safety of persons traveling on or upon a railway) and 147 (trespass and misuse of railway property) of the Railway Act.
NDTV
23-05-2025
- Politics
- NDTV
UP Man Arrested For Spying For Pak, Was Part Of "Anti-National" WhatsApp Groups
Varanasi (Uttar Pradesh): The Uttar Pradesh Anti-Terrorism Squad (ATS0) received intelligence that Tufail, son of Maqsood Alam, a resident of Varanasi, Uttar Pradesh, was associated with a WhatsApp group created by Pakistan-backed anti-national organizations aimed at harming India's sovereignty, unity, and integrity, said a an official statement. Tufail is a resident of Doshipura, Jaitpura, District in Varanasi. It was also reported that the individual was sharing important internal security-related information with Pakistani phone numbers. According to the release, upon developing this intelligence, the ATS field unit in Varanasi confirmed that the accused, Tufail, was in contact with multiple individuals in Pakistan. Tufail was sharing videos of Maulana Shad Rizvi, a leader of the terrorist organisation Tehreek-e-Labbaik in Pakistan, on WhatsApp groups. He was also sharing messages calling for "Ghazwa-e-Hind," avenging the Babri Masjid incident, and implementing Sharia law in India. Tufail had shared images and information related to several key Indian locations, including Rajghat, Namoghat, Gyanvapi, the railway station, Jama Masjid, Red Fort, and Nizamuddin Auliya, with Pakistani numbers. He also circulated the link to these Pakistan-run groups among many other people in Varanasi. Tufail was reportedly in contact with over 600 Pakistani numbers. He was also in contact via Facebook with a woman named Nafeesa, a resident of Faisalabad, Pakistan, whose husband is reportedly in the Pakistani army. On May 22, 2025, Tufail was arrested from Adampur, Varanasi under FIR No. 05/25, Sections 148/152 of the BNS (Bharatiya Nyaya Sanhita) at ATS Police Station, Lucknow. The accused will be presented before the Honourable Court as per legal procedure for further judicial action. His mobile phone and SIM cards were also seized.
