Latest news with #SpinalMuscularAtrophy
Time of India
15 hours ago
- General
- Time of India
Representation without power is not inclusion. It's illusion
If somebody writes an epitaph to Sangita, it should be headlined 'Happy Soul'. Nothing fazes her. No challenge is too big. A fan of James Bond's 'never say die' spirit, just like him she thrives on adrenalin rush as she fields every curveball life throws her way. Sangita is a person with multiple disabilities. A patient of Spinal Muscular Atrophy (SMA), Sangita is a wheelchair user and hearing aids user. For the past 10 years, she has been whizzing past life in a wheelchair, notching professional milestones. She believes nothing is insurmountable, certainly not limitations imposed by disabilities. Sangita has three decades of experience in the media, content and communications industry across verticals and industries. She has been associated with the development and disability sector and featured in the first Directory of Development Journalists in India published by the PII. She has also functioned as a media representative of the Rehabilitation Council of India and has conducted various S&A programmes for bureaucrats. Sangita is the founder of Ashtavakra Accessibility Solutions Private Limited, a social enterprise dedicated to the inclusion of the disabled. LESS ... MORE In the absence of real power and representation, tokenism can take insidious forms. A stakeholder consultation on a policy paper that becomes just an exercise in photo-op to check the box, awards that glorify and normalise exceptional few as templates for disabled achievement while erasing the systemic barriers faced by the many, accessibility measures that start with a ramp and end in a road that opens on a heavy traffic route with no zebra crossing, no tactile path, no thought for safety… These are not imaginary scenarios but the reality of disability inclusion. Tokenism doesn't just distort the goal of inclusion; it becomes a dangerous substitute for it. And until representation comes with real power, budget, and accountability, the system will continue to applaud itself while failing the very people it claims to uplift. A slogan without power: The illusion of representation So how do we ensure a course correction? 'Nothing about us without us' will remain a slogan unless persons with disabilities (PwDs) find real representation across the spectrum—starting with politics. Without seats at the table, policies designed for disabled people will continue to be made through the lens of charity, not clarity. And if you have your ear to the ground, you'd have heard the rising murmurs from the disabled community: 'We want our rights not charity'. Over 1.3 billion people worldwide live with some form of disability. That's roughly 15% of humanity. Yet, when it comes to elected office, where are the PwDs? The answer is obvious – invisible and ignored. Worse, they are considered unfit to hold office, while inaccessibility of the election process prevents them from even exercising their franchise. It is little wonder then that while many democracies have made gains in gender, racial, and caste inclusion, disability remains the last frontier, rarely prioritized, often ignored. This issue is not just about representation. It's about leadership. It's about missed voices, policy blind spots, and a crisis of democratic legitimacy. For real difference, inclusion must go beyond symbolism and must mean actual power. Representation lags behind: A global snapshot Despite comprising over 15% of the world's population, persons with disabilities (PwDs) have historically been excluded from political power. One of the largest minority groups in the world, PwDs are barely present in elected positions of power in the world. In United Kingdom, only five Members of Parliament (MPs) in 2021 identified as disabled—just 0.8% of the House of Commons. Meanwhile, 21% of the UK population reports having a disability. In the United States, a Rutgers University study found that 10.3% of elected officials at various levels reported a disability, compared to 15.7% of the U.S. population. At higher levels of government, that number drops even further. In the European Union, most EU nations show disability representation in parliament at well below 1%. Despite legal commitments to equality, the reality falls short. While in India, estimates place the number of PwDs in India between 26 and 70 million. Yet, in the 2024 Lok Sabha elections, not a single MP declared a disability. A snapshot of disability-inclusive political reforms While the right to vote has seen incremental progress, the right to represent, legislate, and lead has remained elusive. However, over the last three decades, a series of global and national reforms—ranging from legislative quotas and electoral access laws to grassroots political appointments—have begun to challenge this exclusion. These moments signal the slow but necessary evolution from symbolic participation to structural power. Some governments have moved beyond lip service and taken concrete steps to ensure PwDs are not just visible but powerful in politics. Uganda has five reserved parliamentary seats for PwDs and mandates their inclusion in every local council Kenya and Rwanda constitutionally guarantee representation for PwDs in both national and regional assemblies New Zealand enacted the Election Access Fund, reimbursing campaign expenses like interpreters and accessible transport Australia has proposed a federal Election Access Fund of $5 million, modelled on New Zealand's success Role models: Leading despite the odds Against the tide, a small but powerful group of leaders with disabilities have broken through, not just as symbols of resilience but as architects of policy. What sets these leaders apart isn't just that they live with a disability—it's that they bring lived experience to policymaking in ways that non-disabled counterparts often cannot. Tammy Duckworth (USA) is a U.S. Senator and Iraq War veteran who lost both legs in combat. Her legislative legacy is rooted in more than advocacy. She's driven institutional change. She co-authored the 'Access to Congressionally Mandated Reports Act' and has been a consistent voice for accessible healthcare and transportation. Mojo Mathers (New Zealand) became the first Deaf MP in New Zealand's history and instead of simply representing the community, she changed the system. Thanks to her efforts, New Zealand established the Election Access Fund, which reimburses disability-related campaign expenses. Jordon Steele-John (Australia), elected to the Senate at just 23, brought both youth and disability perspectives into Australia's political narrative. A wheelchair user with cerebral palsy, he consistently pushes for intersectional reforms. Crystal Asige (Kenya), who lost her sight as an adult, has transformed her personal experience into legislative action. As a nominated senator, she has driven legal reforms including caregiver tax relief, inclusive education funding, and digital accessibility. Systemic exclusion This underrepresentation is not coincidental—it's systemic. The barriers to political representation are structural, legal, and cultural. Let us find out how each of these barriers is a roadblock in political representation of the PwD. Physical and infrastructural inaccessibility: Politics is conducted in public spaces. Unfortunately, most offices, campaign trails, legislative halls are often inaccessible. In many countries, including India, basic features like ramps, accessible transport, and adaptive technology are still missing. Financial exclusion: Running for office is expensive. For PwD candidates, it's even more costly because they need assistive technology, personal aides, interpreters, and accessible communication methods, a financial burden few can bear in this game of dice. Few countries offer financial support to cover these disability-related campaign costs. Legal and institutional gaps: While many nations have quotas for gender or caste representation, legal frameworks mandating political inclusion of PwDs are rare. India has no national-level reservation or requirement to include PwDs in legislatures. Social and media bias: The framing of PwDs by media as either tragic figures or inspirational stories has ensured that they are not seen as serious political actors. Public perception still sees disability as a deficit, not a dimension of diversity. Together, these barriers create a cycle of exclusion that keeps political doors closed to a significant portion of the population. Source: Secondary research [To be continued in Part 2: 'From Symbol to Power: A New Chapter in Disability Representation'] In Part 2, we explore how India's disability rights movement evolved, highlight state-level breakthroughs in Chhattisgarh and Tamil Nadu, and present what real inclusion could look like—from the grassroots to Parliament. Facebook Twitter Linkedin Email Disclaimer Views expressed above are the author's own.
Hans India
3 days ago
- Health
- Hans India
Run held to raise awareness on rare genetic disorder
Hyderabad: Cure SMA Foundation of India, a parent-led non-profit organization, organized the 3rd edition of Run for SMA – 2025 at Gachibowli Stadium on Sunday. The run aims to raise awareness about Spinal Muscular Atrophy (SMA)—a severe and rare genetic disorder that affects children's muscle strength and movement, often leading to respiratory failure if left undiagnosed and untreated. The run was flagged off by Special Chief Secretary to Govt of Telangana Jayesh Ranjan, along with Guests of Honours included, Bhavani Sri, Secretary, National Turmeric Board, Archana Suresh, Director, Telangana Social Impact Group. Dr. Radha Rama Devi, Senior Consultant, Pediatrician & Geneticist, Rainbow Children's Hospital, Mayur Patnala, Founder & Global CEO, Nirmaan Organization. The Run featured both timed and non-timed running categories 21K, 10K, 5K (timed), and a 5K non-timed run. It witnessed enthusiastic participation from approximately 2,500 runners, including students, corporate employees, medical professionals, and SMA families, all uniting to support a noble cause.
The Hindu
4 days ago
- Health
- The Hindu
Hope cut short: rare disease patients in India struggle without sustainable drug access
For patients living with rare diseases in India, access to treatment often feels like a brief window of light in an otherwise dark tunnel. Lifesaving drugs exist, and for a while, they offer stability, dignity, and hope. But when public funding runs out, treatment abruptly stops, and hope disappears just as quickly. This is the everyday reality for rare disease patients like P.A. Abhinand, 37, an Assistant Professor of Bioinformatics at Sri Ramachandra Institute of Higher Education and Research in Chennai. He lives with Spinal Muscular Atrophy (SMA) — a rare, progressive neuromuscular condition that causes the deterioration of motor neurons in the spinal cord. These neurons are responsible for transmitting signals from the brain to the muscles. Without them, muscles weaken over time, leading to severe physical disability. Many SMA patients become wheelchair-bound and gradually lose the ability to breathe and swallow independently. Families struggle without continued support In 2020, India's drug regulator approved Risdiplam, the first and only treatment for SMA available in the country. Though not a cure, the oral medication helps stabilise the condition and slows down the muscle degeneration process. For four years, Abhinand accessed Risdiplam through crowdfunding efforts and family support. The drug helped him avoid life-threatening infections and allowed him to actively pursue his teaching and research work. 'It was the most productive phase of my career,' he says. 'That medication gave me a chance to breathe better, live better.' But that chance has now been taken away. 'One bottle costs around ₹6.66 lakh, and I need 30 bottles a year,' Abhinand explains. Although he qualifies under the National Policy for Rare Diseases (NPRD) launched by the Ministry of Health in 2021, with no renewal mechanism or continued support, he questions the point of the one-time fund. Abhinand, who has spent years fighting for access and awareness, points out the deeper problem. 'I still have some level of assistance and social capital. What about those who have nothing at all?' he asks. Gaps in the national policy The NPRD was introduced to offer financial support to patients with rare diseases at designated Centres of Excellence (CoEs). It classifies conditions into three categories: those treatable with one-time curative therapies; those requiring low-cost, long-term care; and those like SMA, Pompe disease, and Gaucher's disease, which demand lifelong, expensive therapies. Gaucher's disease, for instance, is a rare genetic condition caused by a deficiency of the enzyme glucocerebrosidase, which helps break down fatty substances in the body. Without it, these substances accumulate in organs like the liver, spleen, and bone marrow, leading to symptoms such as organ enlargement, bone pain, low platelet counts, and chronic fatigue. Abdul Rahman, a two-and-a-half-year-old from Uttar Pradesh, was diagnosed with Gaucher's Disease in 2021 after months of medical visits across Kanpur, Lucknow, and Delhi. His family spent over ₹50 lakh on enzyme replacement injections, which temporarily stabilised his condition. But when the funds dried up in 2022, the therapy stopped. He now experiences severe pain, neurological complications, and behavioural issues. Rahman's father, Abdul Kalam, said that despite seeking help from AIIMS, Delhi —one of the country's CoEs — they have not received additional support. In Chennai, four-year-old S. Harish was also diagnosed with Gaucher's. His father, Sathyaraj, recalls the first signs when the child's stomach became abnormally hard and swollen. After diagnosis, Harish began receiving imiglucerase, the primary enzyme used in Gaucher's treatment, through the Institute of Child Health in Egmore, one of the CoE. Administered twice a month, the drug improved his condition. However, funding under NPRD was exhausted last week. R. Karthik, a resident of Madurai, has a nine-year-old son with Pompe disease. It is caused by a deficiency of the enzyme acid alpha-glucosidase. This enzyme is essential for breaking down glycogen in cells. Without it, glycogen builds up in muscle tissues, causing progressive weakness in the heart, skeletal, and respiratory muscles. Karthik's family had to travel to Chennai twice a month for treatment. 'It was hard to manage both the travel and my job in the northern part of the state. And now the drug has stopped,' he says. Similarly, for Class 5 student Adrija Mudi and her parents, who live nearly 200 kilometres from Kolkata, travelling to AIIMS Delhi for treatment was an exhausting and costly ordeal. After exhausting government funding, the family managed to continue treatment briefly through donations and a discounted supply from the manufacturer. But now, even that support has ended. Adrija's condition has since worsened — she is now experiencing both hearing and vision problems. Call for urgent action Advocacy groups say these stories are not isolated. Across India, more than 55 patients have exhausted the ₹50 lakh cap provided by NPRD. Many now face rapidly deteriorating health conditions with no hope of continued care. In Tamil Nadu alone, at least six children are stranded without access to their life-saving medications. In Karnataka, over 24 patients face the same fate. Others from Delhi, West Bengal, Rajasthan, and Uttar Pradesh are similarly affected. 'We don't know what to do next,' D. Sathyaraj, father of Harish, says. 'We can't afford to buy it from the company directly.' In October 2024, the Delhi High Court ruled in favour of continuing treatment for eligible patients under NPRD. However, the union government challenged the verdict in the Supreme Court through a Special Leave Petition. The Supreme Court has since stayed the High Court's decision, except for certain exceptions, and the matter is now being heard. Meanwhile, Patient organisations have been actively petitioning the judiciary to expedite hearings. Some have even written directly to the Chief Justice of India, seeking urgent intervention. Without institutional support or a clear funding mechanism, they warn, patients are slipping into critical stages — or worse, dying. Raja Murugappan, a member of the Rare Diseases Support Society in Tamil Nadu and Puducherry, says they have written to the Prime Minister seeking urgent intervention. 'Very few understand the seriousness of rare diseases,' he says. 'Each time, it's a struggle to access medication. People don't realise that these treatments are lifelong. How can families be expected to afford such expensive drugs indefinitely?'
Hans India
4 days ago
- Health
- Hans India
3rd Edition of Run for SMA held to Raise Awareness on Rare Genetic Disorder
Hyderabad: Cure SMA Foundation of India, a parent-led non-profit organization, organized the 3rd edition of Run for SMA – 2025 on Sunday at Gachibowli Stadium, Hyderabad. The run aims to raise awareness about Spinal Muscular Atrophy (SMA)—a severe and rare genetic disorder that affects children's muscle strength and movement, often leading to respiratory failure if left undiagnosed and untreated. The run was flagged off by Special Chief Secretary to Govt of Telangana Jayesh Ranjan, along with Guests of Honours included, Bhavani Sri, Secretary, National Turmeric Board, Archana Suresh, Director, Telangana Social Impact Group. Dr. Radha Rama Devi, Senior Consultant, Pediatrician & Geneticist, Rainbow Children's Hospital, Mayur Patnala, Founder & Global CEO, Nirmaan Organization. The Run featured both timed and non-timed running categories 21K, 10K, 5K (timed), and a 5K non-timed run. It witnessed enthusiastic participation from approximately 2,500 runners, including students, corporate employees, medical professionals, and SMA families, all uniting to support a noble cause. For the first time, over 2000 Indian Coast Guard personnel all along the Indian Coast, Andaman and Nicobar and Lakshwadeep Islands from 42 CG Stations, 5 Air Stations and 4 Air Enclaves participated in the Run Virtually as a CG Veteran Initiative. Srilakshmi Nalam, Co-founder and Trustee of Cure SMA India, emphasized the importance of collaboration between medical professionals, research bodies, corporates, and the government to create a sustainable ecosystem for rare disease families in India. She noted that Run for SMA is part of the Global SMA Awareness Month, observed in August.
Mint
06-08-2025
- Entertainment
- Mint
Samay Raina, Apoorva Mukhija reunite post India's Got Latent row: ‘Mujhe jana pad gaya tha Assam, Delhi'; netizens react
Comedians Samay Raina and 'The Rebel Kid' Apoorva Mukhija reunited for a skincare ad, making fans go crazy over their reunion after India's Got Latent controversy involving Ranveer Allahbadia. Samay conveys subtly that he had to go to Assam and Delhi, apparently giving a reference to his appearances before Guwahati police and Supreme Court in different cases. 'Yaar humare last meeting ke baad mujhe toh STD hi ho gaya tha (I got an STD after our last meeting),' quips Samay. Apoorva instantly tells him, 'PTSD hota hai woh (That's PTSD),' to which he replies, 'Nahi nahi, mujhe STD hi hua tha – Sun Transmitted Disease." He added, 'Woh jana pad gaya tha na Assam, Gujarat, Delhi – skin damage ho gayi thi (Had to travel to Assam, Gujarat and Delhi, you see – my skin got damaged).' One of the users said, 'Samay ka sahi upyog koi samay se seekhe', another stated, 'mat kar lala mat kar'. 'Kaafi crazy hogya ye 😂😂😂', 'We need more of you both 😭☝🏻' 'This ad is more entertaining than most bollywood movies' 'OGs are back' were some other comments made. Samay has been accused of mocking individuals with disabilities, including those affected by Spinal Muscular Atrophy (SMA) and blindness. The Supreme Court raised concerns over the videos and termed them "disturbing". Around February 10, podcaster Ranveer Allahbadia posed a highly controversial question to a contestant, asking whether they would rather watch their parents have sex for life or join in once to end it. That remark, along with panelists including Apoorva Mukhija, Samay Raina, Ashish Chanchlani, and Jaspreet Singh, sparked outrage and led to police complaints and FIRs under obscenity charges. He announced his upcoming tour 'Samay Raina is Still Alive and Unfiltered'. Besides the poster, he posted a city-wise schedule of his tour. Samay Raina's India tour is set to commence on August 15 in Bengaluru and will conclude on October 5 in Delhi.
