Over 90 children with SMA receiving free drug in Kerala
Five types of the disease are commonly identified based on the age of onset and the severity of symptoms. According to official sources, children below the age of five are being given the free drug since 2022. Those below the age of 12 were included in the scheme in 2024.
A total of 107 children have been given the free medicine since July 2022. Of them, 19 are in Malappuram, 15 in Kannur, 14 in Ernakulam, 10 each in Thrissur and Kozhikode, eight in Palakkad, seven each in Kottayam and Thiruvananthapuram, six each in Kasaragod and Alappuzha, three in Kollam, and two in Pathanamthitta. Fourteen of them passed away in the course of the treatment.
An official, who is part of Kerala Against Rare Diseases, the government's comprehensive project to prevent and manage rare diseases, told The Hindu on Thursday (July 17) that the technical committee formed for the implementation of the scheme had been getting at least 15 to 20 fresh applications a year. Those with Type 1 SMA, the most severe and common form of the disease, whose symptoms appear from the age of six months, are given direct approval. These children die within a year of their birth if they don't get the medicine. As many as 67 of those who got the free drug were in this category.
The sources said that the first SMA clinic in Kerala was set up at the SAT Hospital, Thiruvananthapuram, and free surgery to correct scoliosis of the spine in SMA patients was also initiated at the Government Medical College Hospital in the State capital. So far, the free surgery scheme has covered 10 children. The government also launched a crowdfunding scheme recently to help SMA patients.
Try Our AI Features
Explore what Daily8 AI can do for you:
Comments
No comments yet...
Related Articles
The Hindu
8 hours ago
- The Hindu
Webinar on ‘Understanding IVF and Fertility' to be held on July 24
Kauvery Hospital, in collaboration with The Hindu, is organising a wellness webinar on 'Understanding IVF and Fertility' at 11.30 a.m. on July 24, to mark World IVF (In-Vitro Fertilisation) Day (July 25). Infertility is a growing concern among couples today, and advancements in reproductive medicine offer renewed hope. The session aims to raise awareness and provide guidance on fertility treatments and procedures. During the webinar, Gopinath, Director, Reproductive Medicine, Kauvery Hospital, Vadapalani, will speak on 'The Evolution of Infertility Treatment', while K. Shanmugavadivu Venkatesan, Senior Obstetrician, Gynaec Endoscopic Surgeon, and Reproductive Medicine Consultant, Kauvery Hospital, Salem, will discuss 'Subfertility in Women'. Ramya Praveen Chander, Consultant, Reproductive Medicine, and IVF Specialist, Kauvery Hospital, Radial Road, will provide insights into 'Intrauterine Insemination', and S. Divya, Consultant, Fertility Specialist, Obstetrician and Gynaecologist, Maa Kauvery, Tiruchi, will speak on 'IVF and Related Procedures'. Soma Basu, Senior Deputy Editor, The Hindu, will moderate the webinar. To register, visit: or scan the QR code.
The Hindu
9 hours ago
- The Hindu
History of air crash probes shows investigators disagree on pilot complicity
In two out of four fatal aircrash probes studied by academic researchers, the investigators from the national agencies disagreed with the United States National Safety Transport Board (NTSB) on whether the pilots intentionally crashed their planes. In three of the four cases, the length of investigations averaged two-three years and in two cases the deceased pilots were proven to have a history of clinically-diagnosed depression. Three of these cases involved one of the pilots having control of the aircraft and alone in the cockpit and the co-pilots for brief periods being unable to access controls. 'Psychological autopsy' – a form of forensic investigation into the deceased's mental state – was a key factor in determining pilot intentionality and even then 'there could rarely be certainty about suicidal intent being the sole cause of an accident,' Alpo Vuorio, psychologist and an academic researcher of aviation disasters, told The Hindu in an email. Questions on the mental health of the pilot have surfaced around the ongoing investigation into the AI-171 flight from Ahmedabad to Gatwick on June 12 where 241 passengers, including crew, died and another 19 were killed on the ground. Though only a preliminary report is out, speculation is rife that the captain may have sabotaged the plane's fuel intake during take-off. Pilot associations in India have vociferously objected to such a characterisation with Ministers advocating restraint until the investigation has concluded. Since 1994, there have been only six confirmed instances globally involving commercial planes where investigating agencies attributed the accident to actions by the pilot. Within these, only four have published reports and analyses in academic literature. Overall, such crashes are a rarity. Based on flying-accident reports in the United States from 1993–2021, 24 out of 7,244 – or 0.33% — fatal accident cases in general aviation were formally attributed to be 'aircraft-assisted suicides' (0.33%). The vast majority of these accidents involved pilots flying their own planes or those of very small operators where planes usually didn't carry FDR (Flight Data Recorder) and CVR (Cockpit Voice Recorder), said a 2023 study led by Dr. Vuorio in the journal Aviation Space Environment. The first of these was Silk Air Flight 185 (Jakarta- Singapore) in December 1999, which killed 97 passengers and seven crew members. A Boeing 737, it crashed into the Musi River, Sumatra, after nose-diving from an altitude of nearly 35,000 feet. Its CVR and FDR stopped recording following which the plane rapidly descended and crashed within a minute. Following a nearly three-year investigation, the National Transportation Safety Corporation (NTSC) – the Indonesian equivalent of India's Aircraft Accident Investigation Bureau that is investigating the Ahmedabad crash – concluded that the 'technical investigation has yielded no evidence to explain the cause of the accident.' The U.S. agency NTSB dissented. 'There was no evidence of a mechanical failure of any of the flight control systems or related components that would have been causal or contributing to the accident and the accident can be explained by intentional pilot action,' said the 140-page report. Along with a technical analysis, this report also placed on record that the captain, who had commandeered the plane, was reportedly battling a financial crisis, though it was also stated that he displayed no aberrant behaviour prior to the flight. The second accident occurred on October 31, 1999, when Egypt Air flight 990, a Boeing 767, crashed into the Atlantic Ocean, south of Massachusetts. About 29 minutes after take-off, the FDR showed that the First Officer disconnected the autopilot. He was alone in the cockpit with the Captain having left for a bathroom break. The FDR recorded an abrupt nose-down elevator movement — the instrument meant to control the plane's pitch (up and down movement) — and the aircraft began a precipitous descent. The CVR recorded that the First Officer, a native Arabic speaker, said several times, 'I rely on God'. After that, the FDR recorded additional unexpected movement of the aileron – a device on the tail to control a plane's rolling movements. A master warning alarm began to sound, and the Captain, who was returning from the toilet, was wondering aloud what was happening. The aircraft crashed about two minutes later. The NTSB determined that the 'probable cause was... as a result of the First Officer's flight control inputs. The reason for the First Officer's actions was not determined'. However media coverage speculated on a wide variety of causes ranging from the first officer's 'religious extremism' to alleged disputes with colleagues. The Egyptian Civil Aviation Authority (ECAA), while first collaborating with the NTSB on the investigation, concluded that 'the officer did not deliberately dive the air-plane into the ocean' and that mechanical failure was 'a plausible and likely cause of the accident'. The third accident, on November 2013, involved the Mozambique Airlines Flight 470 from Maputo, Mozambique to Luanda, Angola. The Embraer E190 twinjet crashed into the Bwabwata National Park, Namibia, killing all 27 passengers and six crew members. About an hour and 50 minutes into the flight, the First Officer stated that he had to go to the toilet. The Captain handled the auto flight system leading to a 'sustained descent and collision with the terrain', says the investigation report. While here the investigation agencies of the Mozambique and Namibia attributed the plane's 'unnatural' descent to the pilot, the Mozambique Association of Air Operators disputed the finding. The investigation lasted three years. The fourth analysed accident — the only one where there was rapid, unanimous consensus that a pilot, with a history of psychiatric problems, intentionally crashed the plane — occurred on March 24, 2015 with Germanwings flight 4U9525 from Barcelona, Spain to Dusseldorf, Germany. There were 150 casualties following the crash of the Airbus A-320. According to the investigation report, in the cruise phase of the flight, the First Officer waited until he was alone in the cockpit. Then he modified the autopilot settings causing the aeroplane to descend and, kept the cockpit door locked. The First Officer did not respond to the calls from air traffic controllers, and the aircraft fell into the French Alps. One of the quickest investigations, which officially concluded within a year, the French Bureau of Enquiry and Analysis for Civil Aviation Safety (BEA) and its German counterpart, the Federal Bureau of Aircraft Accident Investigation (BFU) concluded that the pilot had deliberately crashed the plane as a 'murder-suicide'. German investigators found a doctor's note in the pilot's apartment, three days following the crash, indicating that he was 'unfit to fly'. They also reported that he suffered from 'psychiatric illnesses' and a post-mortem analysis of his body found the presence of a combination of antidepressants, escitalopram and mirtazapine and a sleep medication, zopiclone. The investigation report mentioned that he had researched online ways to 'commit suicide' before commandeering the flight. 'The links between pilot suicides and social change, such as unemployment threats and financial recession, have not been studied, given the low numbers of pilot suicide cases as well as the unpredictability and infrequency of recession, coupled with methodological challenges such as suitable comparison groups and the absence of baseline measures,' said Dr. Vuorio. 'However, it has been found that significant sudden changes in society may increase the number of pilot suicides. For example, after the 9/11 terrorist attacks in New York, the risk of suicide by aircraft in the year following the attack was almost four times the average risk in the five years prior to the terrorist attack. Significant, sudden and adverse changes in society can have an impact on pilot mental health,' he added.
The Hindu
2 days ago
- The Hindu
World Brain Health Day: Stroke management and head injury care to be provided on a ‘hub-and- spoke' model in Karnataka
Soon timely stroke management and head injury care will be available for people in government medical colleges closer to their residing districts. NIMHANS in coordination with the State government has developed 'hub-and-spoke' model for stroke and head injury care across Karnataka. Under this model, an advanced stroke and head injury centre (hub) at NIMHANS will coordinate for establishment of spoke centres in six medical colleges and provide guidance and support across the State. July 22 is observed as World Brain Day and the theme for 2025 is 'Brain Health for All Ages.' A stroke occurs when the blood supply to part of the brain is disrupted, either by a blockage or a bleed, causing brain cells to die due to lack of oxygen and nutrients. This can lead to a range of disabilities, from mild weakness to severe paralysis, and in some cases, permanent disability and even death. Golden hour Recognising the symptoms and seeking immediate medical attention within the 'golden hour' - four to six hours after symptoms begin - is crucial for minimising damage and maximising recovery. Immediate treatment can significantly improve outcomes by restoring blood flow to the brain and preventing further cell death, doctors said. The stroke management and head injury care project will be on the lines of Karnataka's heart attack (ST-Elevation Myocardial Infarction - STEMI) management project currently running in 86 taluks. The hub-and-spoke model will avoid delay in providing stroke diagnosis and treatment apart from head injury care to needy patients. Accessibility to timely care closer to their place of stay will avoid patients rushing to NIMHANS, thereby ensuring there is no congestion at the premier mental health institution. At NIMHANS six to 12 stroke patients and 15 to 16 head injury cases are seen daily. NIMHANS apex centre Girish B. Kulkarni, Professor of Neurology and head of the stroke unit at NIMHANS, told The Hindu on Monday that the hub-and-spoke model for stroke management, involves a network of healthcare facilities where NIMHANS - the apex stroke centre (hub) will provide advanced care and support to surrounding smaller facilities (spokes). 'This model aims to improve stroke outcomes by streamlining access to timely and appropriate care, especially in the crucial 'golden hour' after a stroke,' Dr. Girish said. While the apex centre at NIMHANS started three months ago, a spoke centre at the Karnataka Medical College and Research Institute (KMCRI) in Hubballi has started tracing stroke patients and has been providing routine stroke management recently. With funding from the State government, KMCRI is all set to get a Digital Subtraction Angiography (DSA) machine shortly. This equipment is used in stroke management to visualise blood vessels in the brain and identify blockages or abnormalities that may be causing a stroke, the doctor said. Apart from KMCRI, spoke centres will be established in government medical colleges in Bengaluru (Bangalore Medical College and Research Institute), Mysuru Medical, Raichur and Ballari. 'We have identified the colleges and the centres will be established soon at a total cost of ₹56 crore,' Dr. Girish said. Brain health Karnataka's Brain Health Initiative (KaBHI) being run in collaboration with NIMHANS has helped improve early detection and management of neurological disorders at the grassroots level. The initiative has trained primary healthcare providers — including doctors and nurses — to identify and treat common neurological conditions such as stroke, epilepsy, and headache in district and taluk hospitals. This has already brought neurological care closer to the people, especially in rural and semi-urban areas, and reduced delays in diagnosis and treatment.
