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Hindustan Times
3 days ago
- Health
- Hindustan Times
The impact and driving force behind India's National Sickle Cell Anaemia Elimination mission
In just over a year since its launch, India's National Sickle Cell Elimination Mission (NSCEM) is already demonstrating a notable impact in the nation's fight against Sickle Cell Disease (SCD). This public health initiative, active in 278 districts across the country, has rapidly transformed the approach to both diagnosis and management of SCD. With a focus on tribal populations which are more susceptible to the disease and an ambitious target to eliminate SCD as a public health problem by 2047, the mission has achieved unprecedented reach, which is evident in its screening numbers. The initiative aims to eliminate Sickle Cell Disease by 2047. According to government statistics, more than 42 million people were screened for SCD in the first year. This figure, in comparison, is over 10 times the annual number of babies screened in the universal new born screening program in the United States (approximately 3.6 million) and 70 times more. This daily identification rate is roughly equivalent to the total number of new births affected over an entire year in the United Kingdom. Furthermore, approximately 2,500 carriers of the sickle cell trait are identified daily. While these individuals do not present immediate clinical concerns, their identification is critical for future prevention. These carriers are informed about the disease and offered premarital screening and genetic counselling to help prevent the transmission of SCD to future generations. All screened individuals are given a standardised, color-coded identity card that visually indicates their sickle cell status and reproductive risk in an accessible format. The mission's multi-pronged approach extends beyond screening to encompass comprehensive care and counselling and also future research. This includes: Prevention strategies Prevention of serious infections has played a key role in SCD management. Immunisations against Streptococcus pneumoniae and Haemophilus influenzae have improved survival rates and brought down deaths caused by the pneumococcal disease. The government is also carrying out mass screenings and those at high-risk are being counsel Prenatal screening For couples at risk, prenatal screening for SCD using advanced techniques like chorionic villus sampling and amniocentesis, is made available at Government of India's expense. This empowers families to make informed decisions. Efforts are being made to improve access to these services in geographically remote areas also. Social support and legal protection Recognising the challenges faced by individuals with SCD, the Rights of Persons with Disabilities (RPWD) Act of 2016 includes thalassemia, haemophilia, and SCD among the three haematological disorders covered. This act provides vital protections and entitlements for those with 40 per cent or more disability, including: · Accommodations at school and work, such as flexible timings and extra leave to allow for medical care · Relaxation in attendance requirements and additional time for timed examinations · Financial assistance for medical expenses · Consideration for employment opportunities in proximity to comprehensive care facilities The Act also mandates non-discrimination, upholds the right to equality and life with dignity, offers incentives for employers to hire individuals with disabilities, and provides preferences in admission to higher education courses. Advancements in disease-modifying therapies Hydroxyurea: A widely used disease-modifying therapy, Hydroxyurea (HU) has been used in patients with SCD in India since 2008. HU is dispensed free of charge through government health systems and is commercially available at low cost. It is manufactured domestically by several pharmaceutical companies, ensuring ready availability. An oral liquid formulation, stable at room temperature is also being manufactured in India, offering a significant advantage for treating children in remote, tropical regions. HU has proven effective in reducing painful episodes, blood transfusion needs, and hospitalisation rates. It is currently being given to all patients with sickle cell disease starting at two years of age. Research is ongoing to assess the efficacy of different dosages and dose escalation strategies. Advancements in curative therapies Hematopoietic Cell Transplantation: Hematopoietic Cell Transplantation (HCT), often referred to as bone marrow transplant, has been gaining popularity in India over the past four decades. The country now has 114 HCT centres, with 89 reporting results to a bone marrow transplant registry. Clinical research India is emerging as a hub for SCD clinical trials, with approximately 47 trials registered in the Clinical Trial Registry India for SCD. These trials encompass a range of interventions, including HU, haploidentical transplant conditioning regimens, and novel drug candidates pyruvate kinase activator, fetal haemoglobin (HbF) inducers. With large numbers of patients with SCD and medical services in private and academic hospitals, India has the potential to serve as a source for conducting interventional clinical trials. Looking into the future Announced by PM Narendra Modi in 2023, NSCEM is a comprehensive effort to improve the care of all SCD patients and lower disease prevalence. Some of its core pillars include: · Increasing awareness for SCD and pre-marital genetic counselling · Prevention via universal screening and early detection · Providing continuous care across primary, secondary, and tertiary healthcare levels · Strengthening tertiary and quaternary healthcare facilities · Encouraging community adoption and providing support systems The progress of the mission is meticulously tracked and updated in real-time on a public online portal, guiding resource allocation at district, state, and national levels. Furthermore, recognising the potential of transformative therapies, the Government of India has made significant investments in research to develop gene therapies for SCD domestically. While concerns about feasibility and cost in low and middle-income countries remain, India's proactive research support comes as a glimmer of hope for future curative solutions. Note to the Reader: This article has been produced on behalf of the brand by HT Brand Studio and does not have the journalistic/editorial involvement of Hindustan Times. The information provided does not constitute medical advice. Please consult a registered medical practitioner for health-related concerns.
New Indian Express
26-06-2025
- Politics
- New Indian Express
TN to give four per cent reservation in promotions for staff with benchmark disabilities
CHENNAI: The state government has issued a Government Order (GO) providing 4% reservation in promotions for Persons with Benchmark Disabilities (PwBDs), along with instructions for its implementation. The move follows recommendations by a high-level committee that scrutinised a report submitted by a sub-committee formed to examine the matter. The committee was constituted in accordance with section 34 of the Rights of Persons with Disabilities (RPwD) Act, which states that the government can provide instructions on reservations in promotions from time to time. According to the GO, the reservation will apply only to posts identified by the government in establishments where the cadre strength exceeds five, and where the posts fall within pay level 25. It will also apply to recruitment by transfer from a lower pay scale to a higher pay scale. The 4% quota will be equally distributed among four categories of disabilities – persons with blindness and low vision, persons who are deaf and hard of hearing, persons with locomotor disabilities (including cerebral palsy, leprosy cured, dwarfism, acid attack victims and muscular dystrophy), and persons with autism, intellectual disability, specific learning disability, mental illness and multiple disabilities including deaf-blindness – with each group receiving 1% reservation. The Welfare of Differently Abled Persons Department, in consultation with other departments, will identify eligible posts for the reservation in line with the RPwD Act and notify them. The GO also allows for exemptions in certain cases. As per section 34 of the Act, if the head of a department considers that the nature of work in an establishment is not suitable for PwBDs, they may seek exemption by submitting a detailed representation to the government.
Hindustan Times
12-06-2025
- Politics
- Hindustan Times
Chandigarh: No ramp, lift in office meant to aid individuals with disabilities
Meant to provide justice to disabled persons, the office of the State Commission for Persons with Disabilities in Sector 18, which is situated on the first floor, has no facility of lift or ramp. The commission, which has the responsibility to ensure the effective implementation of Rights of Persons with Disabilities (RPwD) Act, 2016, itself is ignoring the Sections 40 and 44 which mandate the accessibility of physical infrastructure to the disabled persons, say visitors. The RPWD Act, 2016, specifies 21 types of disabilities. The Section 44 of the RPwD Act goes on to state that no establishment shall be granted permission to build any structure if the building plan does not adhere to the rules under Section 40 and no establishment shall be issued a certificate of completion or allowed to take occupation of a building unless it has adhered to such rules. In the already built infrastructure, the Act calls for provisions for making it accessible to disabled persons. After the Supreme Court directions to states to appoint commissioners for persons with disabilities, the State Commission for Persons with Disabilities was set up in Chandigarh in September 2024. The commissioner was appointed and given office in Sector 18, the same building that houses Chandigarh Right to Service Commission and other offices. As many as 50 cases were listed in the past nine months in the commission that has quasi-judicial powers with about 60% being settled, said commissioner Madhvi Kataria. 'I have written to the social welfare department numerous times to either have the office on the ground floor or make accessibility provisions. The matter has been taken up with the administrator as well. We are hopeful to have a positive outcome,' she said. As a temporary arrangement, the cases related to people with locomotor disability are heard on the ground floor who are unable to walk upstairs. National Association for the Blind's executive member Shiv Kumar, who suffers from visual disability, said, 'Not just locomotor disability, the office structure is not friendly for those with visual, hearing and speech disabilities as there are no tactile tiles on floor, no sign language and braille boards in place. Many people are not even aware of the commission's office because there is no board, website or any awareness about the commission.' Navpreet Ganga, LLB student from Panjan University, who uses crutch to walk, said, 'Nothing feels more demeaning than entering a building with no ramp, no lift, walking on tactile-less floors and having washrooms not made for specially abled.' Social welfare secretary Anuradha Chagti refused to comment on the issue. As per the RPwD Rules, 2017, Harmonised Guidelines for Universal Accessibility have been framed on measures to make physical environment, transportation, information and communications accessible to disabled persons. Among the measures missing in the commission's office are braille/tactile features along with appropriate wayfinding signages, tactile guiding surface indicators and colour contrast at site entrance. There is no floor demarcation in the parking area for people with disability, and also the designated parking is above normal height and only for two wheelers. No beepers are installed at the main entrance point to enable people with visual impairments to locate them. No tactile layout plan along with braille and audio system is there. The guidelines also mention the need to have handrails with braille plates indicating specific location on both sides of the corridors.
Time of India
10-06-2025
- Business
- Time of India
Chhattisgarh high court dismisses plea for visually impaired reservation in assistant professor recruitment
Chhattisgarh high court dismisses plea for visually impaired reservation in assistant professor recruitment RAIPUR: The Chhattisgarh High Court dismissed a writ petition filed by a 27-year-old visually impaired candidate, who sought a 2% reservation for blind and low vision persons in the recruitment of Assistant Professors (Commerce). The court upheld the state govt's decision to deny such reservation in this specific subject, citing the nature of teaching duties involved and the reservation already granted to other disability categories. Saroj Kshemanidhi, 27, appeared for the 2019 Assistant Professor (Commerce) recruitment conducted by the Chhattisgarh Public Service Commission (CGPSC). Though he cleared the written examination and was called for the interview, he did not make it to the final selection list. He then filed a writ petition under Article 226 of the Constitution, seeking a directive to the CGPSC to issue a corrigendum ensuring a 2% reservation for visually impaired candidates, covering both current and backlog vacancies. He also requested the court to stop the CGPSC from filling these vacancies until the matter was resolved. The CGPSC argued that it functioned solely as an examining body and not as a policymaker. by Taboola by Taboola Sponsored Links Sponsored Links Promoted Links Promoted Links You May Like Giao dịch vàng CFDs với mức chênh lệch giá thấp nhất IC Markets Đăng ký Undo It stated that the petitioner applied knowing there was no reservation for the visually impaired in the Commerce subject and could not challenge the process midway. The Commission also pointed out that identifying suitable posts for reservation falls under the domain of the state govt. The State of Chhattisgarh, the second respondent in the case, submitted that the reservation pattern followed in the 2019 recruitment advertisement was in accordance with a govt circular dated 29 August 2018. They further noted that the High Court earlier directed the authorities to reallocate reservation in compliance with the Rights of Persons with Disabilities (RPWD) Act, 2016, and subsequent Supreme Court rulings. As a result, corrigenda were issued in November 2019 and January 2021 adjusting reservation across various subjects, including Commerce. The state clarified that the Assistant Professor post is part of a larger cadre, and reservations are applied at the cadre level, not by individual subject. It further argued that Kshemanidhi's petition resembled a Public Interest Litigation and was not maintainable as he accepted the terms of recruitment without objection. Appearing for the petitioner, Advocate Vijay K Deshmukh contended that denying reservation to the visually impaired in the Commerce subject violated Article 16(1) of the Constitution. He cited previous recruitment rounds where such reservation was granted. Justice Narendra Kumar Vyas framed the core question: whether the state was obligated to provide a 2% reservation for blind and low vision candidates in Commerce, despite already allotting reservation to other disability categories under the same recruitment. Citing Sections 33 and 34 of the RPWD Act, the court observed that while 4% of total vacancies must be reserved for persons with benchmark disabilities, the identification of suitable posts is the prerogative of the appointing authority. Given the writing-intensive nature of Commerce teaching, the court found the state justified in limiting reservation to candidates with disabilities such as OA (one arm) and OL (one leg). The court ruled that the state's action was neither arbitrary nor illegal and declined to issue a writ directing the inclusion of visually impaired candidates in the reservation. The petition was dismissed, and the interim stay on appointment was vacated. The state has been directed to issue the pending appointment order within 60 days.
News18
10-06-2025
- Health
- News18
Courts Can Act In Best Interest Of Mentally Ill As MH Law Doesn't Define Their Wishes: Allahabad HC
Last Updated: High Court noted that MH Act has laid down certain standards and factors to be considered while determining the "best interest" of the mentally ill person but not on wills. Noting that no guidance exists under the Mental Healthcare Act, 2017 (MH Act) as to what would constitute the 'wills and preferences" of a mentally ill person, the Allahabad High Court has said courts can exercise their parens patriae jurisdiction. The High Court found that the MH Act had laid down certain standards and factors to be considered while determining the 'best interest" of the mentally ill person. 'However, no guidance exists as to what would constitute the 'wills and preferences' of the person. Even in the proviso to Section 14 (1), the factors to be considered for providing total support are conspicuously absent. The MH Act has no provision in respect of management of financial affairs, appointment of guardians or the manner in which the movable/immovable property of the mentally ill person is to be taken care of. Thus, there is a clear statutory vacuum," said a bench of Justices Om Prakash Shukla and Rajan Roy. The division bench of the High Court went on to observe that the solemn nature of the said jurisdiction having been repeatedly recognized by the Supreme Court, the question as to whether it is the Board or the Appellate Authority or as to which Court has to exercise it and in what manner is one of mere procedure, so long as the 'wills and preferences" of the mentally ill person and the other factors set out in the rules are borne in mind by the Board or this Court while exercising its parens patriae jurisdiction. Court made these observations while dealing with the case of a woman suffering from Moderate Intellectual Disability. Before the high Court, one Saurabh Mishra filed a petition challenging the decision of the -Mansik Swasthya Punarvilokan Board, Barabanki which rejected his appointment as a representative of the disabled woman rejected on the ground that he had a criminal history of two cases. Noting that the concerned woman had no other legal heir, except the petitioner, who is her relative and a family as being the son of her real brother, the bench went on to quash the Board's order and appoint the petitioner as the nominated representative of under the MH Act, 2017 and for providing support to her under the Rights of Persons with Disabilities (RPwD) Act, 2016. 'In case, any relative/family or friend of opposite party no.4 points out that the nominated representative/petitioner is not acting in her best interest, such person will also have the locus to approach either the Board or this Court for issuance of proper direction and for removal of the petitioner", the court further ordered. First Published: June 10, 2025, 13:01 IST
