NATIONAL POLICY FOR RARE DISEASES
Tax the billionaires, Congress isn't alone in its demand amid a 'rare political opportunity'
Congress has queried Prime Minister Narendra Modi's stance on "billionaire tax", particularly as it approaches discussion at the upcoming G20 meeting. Jairam Ramesh, Congress's general secretary for communications, highlighted Brazil's proposal, backed by France, Spain, South Africa, and Germany, for a 2% wealth tax on billionaires.
Why so much buzz over a budget exercise, Kola Veri Di?
The annual budget is a significant government announcement that impacts various sectors of society. Over the years, different budgets have introduced reforms and policies that have shaped the economy. While some budgets have been revolutionary, others have focused on incremental changes such as tax exemptions and policy updates. The budget speech outlines the government's financial goals and objectives for the year. Despite the hype surrounding the budget, its true impact is evaluated over time. Beyond personal tax calculations, the budget plays a crucial role in shaping the country's economic landscape and societal development.
Oil tanker held by Iran for over a year heads toward international waters, tracking data shows
The Advantage Sweet, an oil tanker seized by Iran in April 2023 amid tensions with the U.S., is now heading toward international waters, according to tracking data. The vessel, carrying $50 million worth of oil for Chevron, was held by Iran without acknowledgment of its release. This move coincides with an Iranian court ordering the U.S. to pay $6.7 billion over sanctions-related medical supply issues. The tanker's seizure was linked to ongoing legal and geopolitical conflicts between Iran and the U.S., involving economic sanctions and military tensions.
Transforming governance through AI
Artificial intelligence (AI) could streamline college admissions by collating student data, suggesting colleges, filling out common applications, and applying for scholarships. Universities would benefit from faster, more efficient seat allocation and scholarship awarding, simplifying the entire process. AI-enabled chatbots can provide very specific and contextualized responses in multiple languages to queries from citizens and even deliver a wide range of citizen-centric services.
As Iran faces a rare runoff presidential election, disenchanted voters are staying away
Iran will hold a runoff presidential election Friday, only its second since the 1979 Islamic Revolution, after only 39.9% of its voting public cast a ballot the previous week. Of over 24.5 million votes, more than 1 million ballots were later rejected - typically a sign of people feeling obligated to head to the polls but wanting to reject all the candidates.
Is your medical claim stuck? Find out why you face problems in health insurance claim settlement and how to avoid them
While health insurers can sometimes be blamed putting customers through unending hardship in clearing claims, many a times it’s the policyholder who is at fault. A significant portion of these health insurance claim rejections can be prevented by asking the right questions during policy selection, carefully reviewing policy documents, and conducting thorough research. This article explores common health insurance claim rejection scenarios and explains how to avoid them.
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High costs of orphan drugs: Patients pay the price for policy hurdles in India
India manufactures APIs for over 400 FDA-approved orphan drugs, but patients face high costs due to Indian pharmaceutical companies' reluctance to develop these drugs domestically.
ADB approves $170 million loan to strengthen health system in India
ADB approved a USD 170 million policy-based loan to enhance India's health system preparedness for pandemics, supporting the National Health Policy 2017.
Russia President Vladimir Putin makes a rare visit to North Korea, an old ally
Putin was met at Pyongyang's airport by North Korean leader Kim Jong Un. They shook hands and embraced, and Kim later joined Putin in his car to personally guide him to Pyongyang's Kumsusan State Guest House, North Korea's official Korean Central News Agency said.
Flesh-eating bacteria that can kill in two days spreads faster than ever in Japan
Flesh-eating bacteria in Japan: A deadly outbreak of Streptococcal toxic shock syndrome (STSS), caused by a "flesh-eating" bacteria, is rapidly spreading across Japan, with Tokyo experiencing a significant surge. STSS can lead to death within 48 hours of infection.
China ready to work with New Zealand to upgrade ties as Chinese Premier Li visits Wellington
New Zealand has in recent years taken a less assertive line with Beijing on security matters than its Western partners in the Five Eyes intelligence sharing partnership and has sought a consistent foreign policy approach to Beijing that spans political parties and administrations. But Luxon told reporters Monday that there were areas where, in talks with Li, Wellington would "call out our differences and discuss those openly, too."
Macro policy choices unclear, but work cut out on reforms agenda
In FY24, nominal GDP grew 9.6%, CPI inflation recorded 5.4%, and real GDP growth was estimated at 8.2%.
56% of India's disease burden due to unhealthy diet: ICMR report
The National Institute of Nutrition (NIN) under the apex health research body said that healthy diets and physical activity can reduce a substantial proportion of coronary heart disease (CHD) and hypertension (HTN) and prevent up to 80 per cent of type 2 diabetes.
How BJP reined in cow vigilantes and got industry back on track
BJP has changed its stance on buffalo meat exports, impacting the industry, especially in the context of vigilante attacks on cattle traders accused of transporting cows for slaughter.
Health insurance claim rejection: Widow fights, wins Rs 28 lakh damage; pre-existing disease can't be free pass for claim denial
The Delhi State Consumer Commission ruled that an insurer cannot reject a health insurance claim solely based on pre-existing diseases if they weren't the cause of death. The commission directed HDFC Life (previously known as HDFC Standard LIC Co. Ltd.) to pay Rs 19.4 lakh along with the interest to a woman whose husband's claim was rejected for not disclosing diabetes. The insurer also has to pay Rs 1,00,000 for mental harassment of the complainant along with the litigation cost. This is a relief for those with common lifestyle diseases like diabetes. Read the full case and verdict in details. What do you need to keep in mind while buying health insurance policy to avoid claim rejection later. Find out here.
Biden and Trump offer worlds-apart contrasts on issues in 2024's rare contest between two presidents
Joe Biden and Donald Trump are two presidents who have tasks left incomplete and a strong desire to complete them. Their histories and proposals regarding abortion, immigration, taxes, and foreign conflicts - and more - make it clear that the candidate elected in November will aim to influence the American society in unique ways.
China's new Moon mission is about to launch, and it's a rare example of countries working together
China's Chang'e 6 mission, with international collaboration and advanced research goals, signifies a significant leap in lunar exploration, emphasizing the importance of shared scientific endeavors in a geopolitically complex world.
Sugar, you shrunk the kids: Bouquet of diseases nestled within your child's nutritional drinks
Have you been a fan of "nutritional" drinks since childhood? Chances are, the milk you consumed was laden with about 50% sugar. This habit may have continued into adulthood, contributing to India's reputation as the "diabetes capital of the world." Recent controversies surrounding Nestle's Cerelac have exposed the issue of added sugar in products for infants. As concerns grow over high sugar content in supposedly nutritious drinks, it is crucial for consumers to be aware of their sugar consumption.
French deficit worsens to 'very rare' level
France's budget deficit exceeded expectations in 2023, reaching 5.5% of GDP, prompting concerns about President Macron's fiscal goals. The deficit surge was attributed to global economic challenges and the conflict in Ukraine. France plans spending cuts to meet the 4.4% deficit target for the year.
Delhi HC: No customs duties on rare disease medicines
Delhi High Court clarifies no custom duties on medicines for rare diseases, ensuring expedited clearance and access to necessary treatments. Justice Pratibha Singh's order emphasizes swift clearance by customs authorities, avoiding unnecessary delays. The ruling follows a Finance Ministry notification granting full exemption from basic customs duty on drugs and food for rare diseases. The decision benefits children with conditions like Duchenne Muscular Dystrophy, easing the financial burden of treatment.
Rare Disease Day 2024: All you need to know about the significance of the day
Rare diseases, often overlooked, affect millions worldwide. Rare Disease Day, observed on February 29th in 2024, highlights the challenges faced by those with rare diseases. The theme, "Share Your Colours," emphasizes collaboration and support. In India, rare diseases like Acanthocytosis Chorea and Achalasia Cardia impact individuals and families, highlighting the need for awareness and support.
Kazakhstan can meet India's demands for rare-earths
Kazakhstan, with its 15 rare earth deposits, aims to cooperate with international partners to harness the ample opportunities in these strategically important components of electronics and clean energy technology. India, seeking rare earth deposits closer to home, recently secured a deal with Argentina. Demand for rare earth metals is expected to grow significantly, with estimates suggesting three to seven times higher demand by 2040.
New survey reveals chronic fatigue syndrome is not rare, affects 3.3 mn adults
The report challenges the perception of CFS as a rare illness, emphasising its impact on a broader population.
Government plans to offer support for treatment of rare diseases
"Accordingly, as these patients have already commenced treatment, Sarepta Therapeutics has committed, as per the communication received by the NDRC (National Rare Diseases' Committee), to continue treating these patients with Duchenne muscular dystrophy for the next three months, and to supply the medication free of cost during this period," it said. The court directed doctor Madhulika Kabra from the All India Institute of Medical Science to place the order for the medicine with the company within one week and expedite the procurement for these 14 patients.
Govt set to file progress report on talks with makers of rare disease drugs
Activists have demanded that tax exemption be given for such drugs that are approved by India’s drug regulator and are available in the country. During the last hearing, the government counsel informed the court it has flagged the issue over customs duty and GST to the finance ministry and “is hopeful of informing the court about the outcome of the said issue on the next date”.
Government in talks with companies over pricing of rare diseases drugs
The court had in May set up a five-member National Rare Diseases' Committee (NRDC) to implement the Centre's rare diseases policy to ensure that its benefits reach patients. The panel held discussions with companies involved in research, manufacture and sale of therapies of rare diseases, including Sanofi, Sarepta and Roche, on July 17, the government informed the court earlier this month.
Haryana starts process to identify patients suffering from rare diseases for monthly pension
The Haryana health department in Gurgaon is compiling a roster of patients afflicted with rare diseases within the district, following the state government's decision to provide a monthly pension of ₹2,750 to individuals with a rare disease. Medical officers at primary healthcare centers have been instructed to identify patients suffering from one of 55 rare conditions, including Pompe Disease, Spinal Muscular Atrophy and Duchenne Muscular Dystrophy.
Fabry disease: Advocacy group seeks Health Ministry's intervention
Patients of Fabry disease in India are calling for equal recognition under the National Policy for Rare Diseases 2021. Advocacy group, Lysosomal Storage Disorders Society of India, have urged Union Health Minister Mansukh Mandaviya to provide guidelines for CoEs to treat all notified disease conditions, including Fabry disease. The rare disease is caused by enzyme deficiencies affecting the functionality of the heart and kidneys, with the diagnosis rate remaining low due to low awareness.
Govt exempts import duty on drugs, food needed for special medical purposes
"The Central Government has given full exemption from basic customs duty on all drugs and Food for Special Medical Purposes imported for personal use for treatment of all Rare Diseases listed under the National Policy for Rare Diseases 2021," a statement by finance ministry said.
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