Latest news with #SpinalMuscularAtrophy
Deccan Herald
3 days ago
- Health
- Deccan Herald
Spinal Muscular Atrophy: Debilitating and costly
Fifteen years ago, Rashmi Sampath noticed that her seven-month-old daughter Deeksha couldn't independently sit and stand. After multiple specialist visits, tests and treatment options explored over one and a half years, Deeksha was diagnosed with Spinal Muscular Atrophy (SMA), a progressive neurodegenerative disease leading to gradual muscle wasting. 'We did a DNA test, and that is how we learnt about SMA. Had we known to recognise signs earlier, maybe the treatment could have been started earlier,' said Rashmi. In 2021, Deeksha, on a wheelchair since she was eight years old, started taking Risdiplam, an orally administered drug for SMA, which costs about Rs 6.2 lakh per bottle. Had her medication costs not been covered under a compassionate access program by Roche Pharma, it would have been difficult for her family to afford her treatment. .Generic drugs can bring hope for SMA patients'.Keerthana, another child with SMA, also had treatment delays, impacting her progress. Her parents, H Nagashree and Kishore, both government employees, have to spend Rs 50-75 lakh annually for the treatment of the two-year-old. 'We are getting three bottles free for the cost of two, but it is still quite expensive for us. She needs 4.4 mg of the oral solution every day. We need two bottles of 60 mg a month, since one bottle lasts about 18 days. We buy two at once and pay about Rs 12.4 lakh and get three more free with them', said Kishore. 'After a year, only two bottles will be given for free. These costs will increase when Keerthana's weight increases and the dosage will go up,' said Nagashree, who lamented that they had not yet received any government support so far. .The Delhi High Court's March 2025 order allowing Hyderabad-based Natco Pharma to develop a generic version of Risdiplam and rejecting the plea of patent holder Swiss pharma major F Hoffmann-La Roche Limited for an injunction has brought hope for over two lakh SMA patients. Roche has now appealed to the Supreme Court. If Natco is successful, it can offer Risdiplam for an estimated cost of Rs 15,900 per 60 mg bottle However, doctors, families of patients and activists argued that this might not be enough. They urged the government to step in and talk with the manufacturer and bulk buy the medicine to reduce the annual costs of the families of SMA patients. .'If a family has a strong background of SMA cases, we suggest parents undergo genetic testing and counselling to rule out the possibility of SMA. Even if nobody in the family has disease manifestations at all, but we suspect SMA in the baby, we do nerve conduction studies and electroneuromyography (ENMG) tests,' Dr Shiva Kumar HR, a consultant neurologist in Bengaluru, said. Dr Kumar noted that deaths occur due to complications arising out of the disorder, not the disorder itself. 'Over time, it weakens respiratory muscles, causing patients to die due to Type II respiratory failure. Life expectancy can be prolonged with gene therapy, but it cannot be called a cure because once a degeneration has begun, it cannot be reversed,' he said. .Prasanna Kumar Shirol, founder of the Organisation for Rare Diseases India (ORDI), said that although the government had the National Policy for Rare Diseases, 2021, its assistance was limited to the one-time payment of Rs 50 lakh per patient. 'Sustainable funding is the only way out. With an ICMR-rated 90% treatment effectiveness for SMA, government support, regardless of the cost, is essential,' he said, adding that not only the Centre but the state governments too needed to step in. 'The governments can develop a standard operating procedure for every rare condition like the SMA, identifying what is the inclusion and exclusion criteria for treatment, the criteria for extending treatment. They can then get into talks with the pharma companies, figure out drug supply for a fixed period and monitor drug effectiveness with timely reviews,' suggested Shirol.
Hindustan Times
26-05-2025
- Entertainment
- Hindustan Times
Partially blind IGL contestant on PIL against show for mocking disabled: 'Don't need others to decide what's offensive'
Among the many controversies surrounding India's Got Latent, hosted by Samay Raina, one involved allegations of mocking specially abled contestants—including Kushal Bhanushali, a visually impaired comedian who appeared on the show. Recently Kushal uploaded a reel on Instagram taking up the subject in his own way and in an exclusive interview, spoke to us about the intentions behind the post. A post shared by Kushal Bhanushali (@ 'People are judging on behalf of disabled people without asking us what we think. We don't need others to decide what's offensive. Sometimes, we want to be treated like everyone else—and that includes being the subject of jokes too,' he told us. The show came under scrutiny after the Cure SMA Foundation of India filed a petition in the Supreme Court, accusing the host and others of making insensitive remarks about disabled individuals. The NGO works to support children affected by Spinal Muscular Atrophy (SMA), a rare genetic disorder. The petition specifically cited instances from the show where Samay Raina asked a visually impaired contestant, 'Which of your eyes should I look into?' and in another episode had also made remarks regarding the treatment costs for a two-month-old child with SMA. The petitioners argued these comments were humiliating and trivialized the struggles of disabled people. The apex court stressed that freedom of speech is not absolute and does not justify speech that damages the dignity of vulnerable sections of society. Kushal, who has partial blindness, appeared on the show to showcase his comedy skills. He said that despite the controversy, his experience was positive and helped open new opportunities. 'Before this, I struggled to get stage slots. After appearing on the show, I started getting regular calls,' he explained. He also revealed that following his performance, many differently abled people reached out to him. 'They told me watching me gave them the confidence to try stand-up or put themselves out there in public,' Kushal said. Addressing the broader debate about comedy and sensitivity, Kushal emphasised the need for direct communication. 'If something is offensive, let the person it concerns say so. Before assuming anything, just ask,' he advised.
Edinburgh Live
22-05-2025
- Health
- Edinburgh Live
Special meaning behind Edinburgh man's decision to take on gruelling cycle challenge
Our community members are treated to special offers, promotions and adverts from us and our partners. You can check out at any time. More info An Edinburgh man is taking on a gruelling challenge as he cycles 435 miles to raise awareness for a disease close to his heart. Giles Lomax, 37, set off from Edinburgh Castle on May 20 to cycle to London. Each mile on the mission represents every baby that was born with Spinal Muscular Atrophy since the UK rejected the disease to be added to the bloodspot programme in 2018. The illness causes muscle weakness and a progressive loss of movement. It is a rare neuromuscular condition and while there is no cure, therapies and support can help manage the condition. Working as the CEO for SMA UK, Giles will be calling in at The Royal Hospital for Children & Young People and the Royal Manchester Children's Hospital to meet some clinicians. The route started at Edinburgh before moving onto the Scottish borders, Carlisle, Penrith, Manchester, Stratford-upon-Aven and concluding in London. Speaking to Edinburgh Live, ahead of the challenge, Giles said: "I did something similar to this last year in Ireland to raise awareness but since the number just keep going up, I decided to get back on the bike. "It's absolutely critical we keep spreading awareness because if babies are treated earlier, they can grow up to have normal lives. "If treatment is delayed, the damage can be unrepairable and children will grow up to have really complex needs like being in a wheelchair or having breathing problems or spinal braces. "It is a really big challenge for me because I am on my own. It's a long day in the saddle but I am nervous and excited. I also know I am doing it for the right reasons." A statement from SMA UK reads: "Over the four days, Giles will travel a total of 435 miles which represents the number of babies born with SMA in the UK since the UK rejected SMA to be added to the bloodspot programme in 2018. Join Edinburgh Live's Whatsapp Community here and get the latest news sent straight to your messages. "If that wasn't enough, then he will be joining cyclists taking part in the annual Ride Scorpion from Great Missenden on Saturday morning. There are plenty of spaces still available and you can find out more and sign up by clicking here. "We will be publishing details of the route, as well as the main stops, and there will be a live tracker available throughout the week. "Giles will be supported by our Community Engagement Coordinator, Gary and they would welcome anyone from the SMA Community to visit them at their pit stops or even join the ride for a few miles." You can find out more here.
Time of India
19-05-2025
- Health
- Time of India
Crowdfunding miracle: 9cr for baby with rare disease
1 2 Nadia: Crowdfunding through social media and donations from celebrities have raised Rs 9 crore for the treatment of 15-month-old Asmika Das from Ranaghat, who suffers from Spinal Muscular Atrophy Type 1 — a rare and debilitating genetic condition that progressively weakens muscles. It took more than a year for the family to raise the amount needed for the child whose limbs have been immobile since birth. Asmika's father Subhankar said her treatment will start at a private hospital in Kolkata by the end of May. Doctors in Kolkata, Chennai and Bengaluru all prescribed an intravenous injection — onasemnogene abeparvovec, sold under the brand name Zolgensma — that costs Rs 16 crore, as the only possible lifeline for her. A distributor agreed to lower the price to Rs 9 crore. "The injection is the most appropriate medicine and should be administered as soon as possible, before the child completes two years of age," said a senior clinical director of a Kolkata hospital. "We made a desperate effort to raise funds through social media. Many, including singers Subhamita Banerjee and Rupam Islam, and Rupsha Dasgupta, donated generously," said Subhankar. By Sunday, the family had collected Rs 8.4 crore. The remaining Rs 60 lakh was donated by Matua Matri Sena Charitable Trust. They handed over a cheque to Asmika's parents in the presence of Bangaon MP Shantanu Thakur on Monday.
Time of India
19-05-2025
- Business
- Time of India
Where are India's disabled leaders? A C-suite reckoning long overdue
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 Introduction For all the talk about diversity, equity, and inclusion in India Inc., one group remains almost entirely absent from the corridors of power: persons with disabilities. While companies boast of gender ratios and ESG commitments, the question of disability—especially at leadership levels—is barely whispered. This silence is not just an oversight. It is a glaring indicator of how inclusion efforts have sidelined over 26 million citizens. This two-part article examines why, despite visible activism, legal mandates, and global initiatives like the Valuable 500, disabled professionals remain on the margins of corporate leadership—and what must be done to change that. In over 25 years across five different organizations, countless corporate visits, and high-profile conferences, I have seldom encountered another person with a disability (PwD) at my side. Where are the PwD leaders of corporate India? A closer look at Forbes and other startup rankings over the past five years reveals a stark underrepresentation of disabled professionals. While exceptional individuals like Srikanth Bolla (Bollant Industries), Hunny Bhagchandani (Torchit), Alina Alam (MITTI Café), and Devika Malik (Wheeling Happiness) have featured in Forbes 30 Under 30 and social entrepreneurship circles, they remain outliers—not proof of systemic inclusion. Of these, Hunny and Alina do not identify as people with disabilities, although they have done tremendous work for the inclusion of the disabled. Why are disabled professionals so rarely seen in C-suites, leadership summits, or business awards? Why, even after graduating from premier institutions like IITs and IIMs, do they struggle for placements and recognition? Despite India's vibrant corporate landscape and participation in global initiatives, the disabled workforce remains invisible in lists like Best CEOs, promising founders, or startup success stories. Globally, fewer than 1% of senior executives identify as disabled (Disability Equality Index, 2023), and in India, the number is even lower. Is this scarcity a reflection of capability—or of systemic exclusion? Are there truly no qualified PwD leaders, or are our systems simply not built to see them? These are the urgent questions we must ask if we are to measure the real impact of initiatives like the Valuable 500. Because without intentional disruption, the silence around disabled leadership will persist—normalized by its invisibility. Why we need more initiatives like the valuable 500 Despite comprising nearly 15% of the world's population, people with disabilities (PwDs) occupy less than 1% of senior corporate roles globally—a stark disparity that reflects decades of systemic exclusion. In 2019, recognizing this urgent gap, Caroline Casey launched the Valuable 500 at the World Economic Forum in Davos. This global initiative set out with a bold goal: to get 500 of the world's most influential CEOs to commit to placing disability inclusion on their business leadership agendas. Before the launch of the Valuable 500, disability inclusion was largely invisible in corporate diversity narratives. While conversations around gender, race, and LGBTQ+ rights gained prominence, disability remained an afterthought. Valuable 500 broke through that silence by demanding that inclusion extend to all identities—not just the visible or the socially prioritized. The core aim was to move companies away from charity-based approaches to a rights-based, systemic strategy—where access, leadership, and opportunity for PwDs were seen as integral to business performance and innovation. Since then, companies like Microsoft, Accenture, SAP, EY, and Unilever—leaders among the Valuable 500—have introduced targeted hiring initiatives and begun to disclose disability representation data. For instance, Microsoft reports that 5.7% of its global workforce self-identifies as disabled, and has launched Autism Hiring and Supported Employment programs. EY's disability self-identification rates in the U.S. increased from 2.3% in 2020 to 3.9% in 2022, while Unilever has publicly committed to ensuring 5% of its workforce comprises persons with disabilities by 2025. SAP, through its Autism at Work program, has hired hundreds of neurodiverse individuals, and Accenture has embedded disability advocacy into leadership goals across its global offices. These numbers show progress—but also reveal the limitations. Most companies still report less than 1% disability representation in senior roles, and only a handful of top executives or board members publicly identify as disabled. Even at Microsoft and EY—among the more transparent firms—C-suite disclosure remains the exception, not the norm. This is why we need not just one—but many more initiatives like the Valuable 500. We need frameworks that are not just global, but tailored to local realities. We need Indian industry chambers, investor groups, and leadership academies to recognize that disability inclusion is not a CSR line item—it's a measure of integrity, innovation, and equity. Because true leadership is not about who climbs fastest. It's about who makes sure others can climb too. Evaluating global progress Since its inception, companies like Microsoft, Accenture, and SAP, part of the Valuable 500, have implemented inclusive recruitment strategies, developed accessible technologies, and created accountability frameworks for leaders. These actions have significantly enhanced the visibility and hiring of PwDs within their organizations. However, representation at the C-suite level remains extremely limited. According to the Disability Equality Index (2023), fewer than 1% of senior executives globally openly identify as disabled, underscoring the deep-rooted exclusion that persists. Indian scenario and challenges India, despite being home to over 26 million PwDs (Census of India, 2011), continues to face systemic and cultural challenges in mainstreaming disability inclusion within corporate structures. While companies like Tata Consultancy Services, Infosys, and Mahindra have signed the Valuable 500 pledge and initiated hiring programs for PwDs, most placements are confined to junior or entry-level roles. According to a 2022 report by the Disability Rights India Foundation, fewer than 0.5% of corporate leaders in India openly identify as disabled—indicating a glaring exclusion from decision-making echelons. One of the fundamental causes behind this leadership vacuum is the lack of inclusive and accessible education. As per the Ministry of Education (2022), only 5% of PwDs in India are able to access higher education. Many government and private educational institutions still lack basic physical and digital accessibility, and inclusive pedagogy remains sporadic. Moreover, mainstream skilling programs under the Skill India initiative report minimal enrolment of PwDs due to a lack of targeted outreach, accessible curriculum, and poor industry linkage. Even those who make it to elite institutions face significant hiring discrimination. Internal reports and student feedback from the Indian Institutes of Technology (IITs) and Indian Institutes of Management (IIMs) suggest that PwD graduates routinely receive fewer interview calls, face biased perceptions about productivity, and experience marginalisation during placements—despite having competitive academic records. Companies often avoid disclosing data on how many PwDs they hire, let alone how many progress through the ranks. Only a handful of Indian corporates include disability in their ESG or DEI reports, with even fewer offering disaggregated data on hiring or promotions of PwD employees. Furthermore, there is no national benchmarking equivalent to the Disability Equality Index in India. In the absence of a credible accountability mechanism, disability inclusion becomes more rhetoric than practice. Many corporates continue to treat accessibility as a compliance burden rather than a leadership imperative. The opportunity is immense India's expanding knowledge economy and growing digital workforce offer potential for inclusive hiring—if designed intentionally. But to unlock that potential, there must be urgent reforms in corporate reporting standards, inclusive recruitment, and workplace culture that welcomes and retains disabled professionals beyond tokenism. (Continued in Part II) Facebook Twitter Linkedin Email Disclaimer Views expressed above are the author's own.
