Latest news with #AlishbaKhan
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.
Express Tribune
02-04-2025
- Health
- Express Tribune
Air pollution and the elites
Daud Khan is a retired UN staff based in Rome. He has degrees in economics from LSE and Oxford, where he was a Rhodes Scholar; Alishba Khan is a qualified Chartered Certified Accountant (UK) and is based in Islamabad Listen to article Lahore is among the cities with the worst air pollution in the world; Islamabad is catching up; and even Karachi, despite its proximity to the sea and to the sea breeze, is impacted. The consequences of air pollution are well known. Breathing the cocktail of toxic chemicals affects the membranes in the nose and lungs, restricts the absorption of oxygen and also enters into the blood and other organs. It is associated with strokes, cardiovascular diseases, lung cancer and arthritis. Babies and young children are particularly vulnerable, and there is strong evidence linking air pollution and permanent damage on the development of their brains. The causes of the poor air quality in our cities are also well known. It includes transport and traffic; power plants, industrial units and factories, including brick kilns; and burning of crop stubble, other agriculture residues and solid municipal waste. The actions needed to address the problem include reducing emission from traffic; from industrial sources; and from the burning of crop residues and municipal waste. These are well understood and have been set out in the scientific literature, in the popular press and even in Government policy documents. If impacts, causes and solutions are known and understood, then why is no action being taken? The issue is particularly puzzling as there is adequate regulation and legislation to reduce air pollution substantially. Why are these laws and rules not enforced? One reason could be due to a phenomenon referred to as "elite capture". Reforms that are good for the country as a whole are not undertaken because they negatively affect the wellbeing of a small and powerful minority (the elite) who control decision-making institution and the implementing agencies. Could elite capture be the reason why the problem of air pollution is not addressed? Let us keep in mind that many of the richest and most powerful people in Pakistan live in Lahore, Islamabad, Rawalpindi and Karachi. They are obviously aware of the health impacts on themselves and their families; and their daily lives are affected by periodic closure of schools, public offices and other facilities due to air pollution. There are possibly two interlinked reasons for the inaction. The first is that Government and other public institutions lack the capacity to implement action. Many Government employees at local level, where actions have to be taken, are averse to doing anything. A large proportion of these employees are political appointees, or have paid hefty bribes for a job. Many are ghost workers who only turn up once a month to collect their salaries. These employees may have little inclination to implement difficult and unpopular directives. In fact, it would simply be unreasonable to expect that a low level officer of the agriculture department would try and stop a farmer burning crop residues, or an employee of the industries department would try to shut down or impose a fine on a polluting brick factory. A second reason could be that the educated urban elites, who understand the problems associated with air pollution and think that action is needed, are not really as powerful as they may appear. Yes, they may work in big companies and offices, hold important positions in the civil service or other Government institutions, or even be members of parliament. But when it comes to decision-making, others carry more weight. This could be the big landlords, factory owners, transport providers and those who formally or informally control services such as disposal of municipal waste. So, what needs to be done so that effective steps will be taken in time to prevent yet another winter of discontent? Clearly we need to bring in other actors into play – actors that would help address the issue of implementation capacity, as well as the issue of political will. One such actor could be the private sector. In a previous article, we had argued for exploring the use of carbon offsets to pay farmers, industrial units or other polluters to reduce emissions. However, going down this path would require substantial work and time, as these instruments are relatively new in Pakistan. Another option could be to involve civil society organisations, in particular those that cut across the urban-rural divide and the rich-poor divide. One such institution could be the religious leadership. It has often been argued that religious scholars, mullahs and other opinion-makers need to play a greater role in matters related to health, hygiene and drug abuse. In the same vein, it might be useful to enlist their help to explain to people the impacts of their behavior on air pollution. Yet another option, one that would have a quicker impact, could be to set up a joint special taskforce with members from different institutions, and give them the mandate of reducing air pollution to levels that are in line with international guidelines. Such institutional arrangements have been successfully put in place at other times, such as after the 2005 earthquake and during the Covid pandemic.
