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Supreme Court to hear pleas over ₹50 lakh cap on Centre aid for rare diseases

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Supreme Court to hear pleas over ₹50 lakh cap on Centre aid for rare diseases


The Supreme Court of India will review the 50 lakh cap on government assistance for treating rare diseases like spinal muscular atrophy. File.
| Photo Credit: AMAN RAJ

The Supreme Court on Tuesday, April 8, 2025, decided to examine pleas challenging the 50 lakh cap on Centre’s assistance for treating patients suffering from rare diseases like spinal muscular atrophy (SMA).

A bench comprising Chief Justice Sanjiv Khanna and Justice Sanjay Kumar said the petitions on the cap of 50 lakh central assistance to treat diseases would be heard by a bench headed by Justice P. S. Narasimha in the week commencing May 13.

Treatment, cost and government funding cap

The bench said pharma firm M/s F Hoffmann-La Roche Ltd, which manufactures the SMA drug Risdiplam priced at ₹6.2 lakh a bottle, had agreed to supply the medicine for free for a year to 24-year-old Seba P.A., who hails from Kerala, and suffers from the disorder. She had previously moved the Kerala High Court, which directed the Centre to provide an additional ₹18 lakh worth of medicines to Seba beyond its ₹50 lakh cap.

The top court on February 24 stayed the High Court order after taking note of the Centre’s appeal that it couldn’t be compelled to breach the ₹50 lakh cap and issued notices to the parties.

The apex court then took note of the submissions that the treatment costs for a SMA patient could go up to ₹26 crore and Risdiplam was being sold at much cheaper rates in Pakistan and China.

It sought the views of the drug manufacturer whether it could reduce the price in India as well.

Negotiations with pharmaceutical companies and price disparity concerns

On Tuesday, the bench perused a sealed envelope of the drug manufacturer on pricing in India and said the price of Risdiplam was negotiated by the National Rare Diseases Committee with the company. “It stands now that the price in India is substantially lower. We cannot tell the government what to do. It has international repercussions,” the CJI said.

Senior advocate Anand Grover, appearing for Seba, reiterated the price of the medicine was much lower in the neighbouring countries. “It is 7,200 USD in India and in China it is 545 USD and in Pakistan too, it’s low. Why can’t it be brought down to this?” he asked.

The CJI said, “I am not saying that it cannot be done. I am saying there is a counter view point. We have not made our mind clear as of now.” SMA is a rare genetic disorder characterised by progressive muscle weakness and wasting, affecting the nerve cells responsible for controlling voluntary muscle movement.

Prolonged treatment regimens with high costs

Under the policy, Centre can provide ₹50 lakh for treatment to a needy patient.

The high court on February 6 said Risdiplam should be provided as a one-time measure to ensure continued treatment for 24-year-old Seba till the matter over its high pricing was addressed by a single-judge bench — a process expected to take at least a month.

Seba’s plea before the high court highlighted the exorbitant cost of Risdiplam.

Patients weighing up to 20 kilogram require one bottle a month whereas heavier patients may need up to three bottles, making long-term treatment financially unviable.

Centre’s concerns over financial burden

The Centre argued while the high court had clarified its ruling was not a binding precedent, granting individual exceptions could set one by default.

“There are more than 3,000 patients across India with varying facts and circumstances and if each case were considered unique, it could create an unsustainable financial burden,” it added.

The Centre’s counsel said the government policy set a firm cap at Rs 50 lakh for all patients, regardless of available resources. Grover said the government could have taken steps to reduce the cost of SMA treatment by either negotiating with the drug manufacturer or invoking provisions under the Patents Act, 1970.

The senior counsel said countries like China and Pakistan had successfully negotiated with the manufacturer to lower the price of the SMA drug while asking why India did not take similar steps.

The bench, however, suggested that the Indian government might be refraining from such measures due to “international ramifications”.

“Why would the Indian government not be interested? They will be very much interested. It’s easy to be critical of that. They would have tried their level best to get the prices down,” the bench said. The bench asked the Centre to explore the possibility of approving expenditures beyond Rs 50 lakh on a case-by-case basis.



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India’s air quality way off WHO markers, need to scale up LPG subsidy scheme: Director

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India’s air quality way off WHO markers, need to scale up LPG subsidy scheme: Director


WHO director of Environment, Climate Change and Health, Maria Neira, emphasises scaling up existing programs like providing access to LPG and subsidies to reduce household air pollution | Image used for representational purpose only
| Photo Credit: AFP

Transitioning to cleaner energy is crucial for India, considering 41% of households still rely on biomass fuel, resulting in increased mortality and morbidity

India’s air quality is far short of World Health Organization (WHO) standards and more than 40 per cent of its population still relies on biomass fuels, leading to deaths every year, an official from the United Nations body has said.

Transition to cleaner energy

In an exclusive interview with PTI Videos, Maria Neira, director of the Department of Environment, Climate Change and Health at WHO, urged the Indian authorities to scale up existing programmes, particularly those aimed at reducing household air pollution caused by the use of biomass fuels for cooking.

“We need to consider programmes like providing access to LPG and subsidies, but of course, the effort has to be not only maintained but probably scaled up,” Neira told PTI.

“As per a think tank report, 41 per cent of Indian households still rely on biomass fuel, resulting in more mortality and morbidity. We would like to call on the Indian government to accelerate and scale up the leadership that they have shown when they put programmes in place to combat household pollution, because it has shown good results when implemented,” she said.

The WHO official said it would be ideal to immediately transition to cleaner energy and renewable non-pollutants, but with fairness at the centre of the policy.

“We recognise that there has to be a fair transition, particularly for those most vulnerable who are currently using polluting sources. That transition through better sources of energy will include access to LPG, biogas, ethanol, they can ensure transition while protecting the health of the people,” she said.

Air pollution and non-communicable diseases (NCDs)

Neira said air pollution is a major contributor to noncommunicable diseases, or NCDs, which would be the subject of a resolution at the upcoming United Nations General Assembly in September.

“We need to make sure that the NCDs community understands that by tackling air pollution, we are contributing enormously to reducing the burden of NCDs,” she told PTI.

Asked about the gap between air quality standards, Neira referred to recent findings published in The Lancet Planetary Health, noting that poor air quality was not limited to Delhi but all regions across the country.

“There’s a study which shows that we always focus on New Delhi when it comes to pollution, but I’m afraid it’s almost all of India where WHO standards on AQI are not implemented,” she said. “One thing is to distance slightly from WHO standards, and another is to go really far beyond them. Air pollution is a public health issue in India, and it needs more political engagement to accelerate the actions already in place.”

Air quality standards and implementation

The official stressed that the country has the resources, innovation and technology to combat pollution. “We have a lot of hope that India can change the situation completely and even set an example for other countries.” Talking about WHO’s Green Page that helps paediatricians track environmental risks in children’s health, Neira highlighted their efforts to educate and train health professionals on recognising and addressing environmental health risks.

She said that a central part of the initiative is the use of the Green Page – a tool that helps paediatricians and other doctors track environmental exposures in children’s health records.

“We want medical professionals to understand what air pollution represents as a health risk and how to promote interventions. The Green Page allows pediatricians to go beyond prescribing medicine, it helps them investigate the environmental causes of respiratory and other conditions. This tool is part of a broader training package we are promoting globally,” the director said.

WHO initiatives and collaborations

Neira also termed as powerful the grassroots movements, like the mothers’ groups that advocate for better air quality. “Many of these movements started in remote areas. Through the Breathe Life campaign, we are trying to create a network, bringing all of them together and making sure that they increase their power.” Asked about the commitments made by around 50 countries and cities during the recent WHO conference, Neira said the WHO has established mechanisms to monitor the commitments.

“We want to work with UN agencies where needed, looking at how to monitor the commitments by sector, and then, of course, through Breathe Life, C40, and other mechanisms, we aim to monitor at the city level,” she said.

The Breathe Life campaign is a global initiative, led by the WHO and the Climate and Clean Air Coalition (CCAC), to raise awareness about the harmful effects of air pollution and mobilise communities to take action for cleaner air.



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How your immune system reacts through anaphylactic shocks to protect you from the “invaders”

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How your immune system reacts through anaphylactic shocks to protect you from the “invaders”


Imagine you are eating takeout, and suddenly you feel like you are getting breathless and it’s getting difficult for you to swallow the food. You also feel itchiness in several parts of your body. These might be symptoms of an allergic reaction or anaphylaxis. When you are allergic to a certain food item or object, and you accidentally consume the same, your immune system reacts to protect you from the “invader”. This immune response leads to the release of a flood of chemicals, which cause symptoms of an allergic reaction.

An anaphylactic shock is a more severe, life-threatening allergic reaction that occurs after exposure to an allergen. It is a rapidly progressing anaphylaxis resulting in a life-threatening drop in blood pressure. It is a medical emergency that requires immediate attention and can affect multiple organ systems in the body, including the respiratory, cardiovascular, gastrointestinal, and skin systems. Understanding its causes, symptoms, diagnosis, and treatment is essential in managing this critical condition effectively.

The most common allergens that can cause anaphylaxis include:

– Foods like peanuts, tree nuts, shellfish, milk, eggs, soy, and wheat are frequent culprits.

– Medications, including antibiotics like penicillin and some anaesthetics, can induce anaphylaxis.

– Bee, wasp, hornet, and ant stings or bites can also be triggers.

How does the shock occur?

Anaphylactic shock occurs when the immune system produces immunoglobulin E (IgE) antibodies (a type of antibody primarily involved in allergic reactions and parasitic infections, produced by the immune system to defend against allergens and other threats) in response to an allergen. Upon re-exposure, the allergen binds to these antibodies on the mast cells and basophils (both are white blood cells in the immune system), causing them to release large amounts of histamine and other inflammatory mediators (naturally occurring chemical compounds that play a crucial role in the body’s immune response).

This is what leads to the various symptoms of an allergic reaction, including vasodilation or widening of blood vessels, resulting in a dramatic drop in blood pressure and increased vascular permeability, causing fluid to leak from blood vessels into tissues, which contributes to swelling; bronchoconstriction or narrowing of airways, making it difficult to breathe; and gastrointestinal symptoms like vomiting, diarrhoea, and abdominal pain and skin reactions, including hives and itching. These physiological changes can rapidly compromise the function of vital organs, particularly the heart and lungs.

How do you identify anaphylaxis?

Anaphylaxis typically has a rapid onset, often occurring within minutes of exposure to an allergen. However, in some instances, symptoms may not manifest for up to an hour or more. Check for the symptoms mentioned earlier and contact a medical professional as soon as possible, apart from using epinephrine or an EpiPen on the individual. In severe cases, there may be a sudden drop in blood pressure, which can lead to loss of consciousness as well.

Diagnosing allergies!

Anaphylaxis is primarily diagnosed based on clinical presentation and patient history. There are no specific lab tests that can diagnose anaphylaxis during an acute event, but tests such as serum tryptase levels can help confirm the diagnosis afterward.

Identifying the allergen through allergy testing (such as skin prick or blood tests) may also be useful to prevent future episodes.

Healthcare providers use criteria from the World Allergy Organization (WAO) or National Institute of Allergy and Infectious Diseases (NIAID) to identify anaphylaxis. A diagnosis is typically made when there is a sudden onset of symptoms involving multiple organ systems after exposure to a known or likely allergen.

Important treatments

Immediate treatment is crucial to prevent death from anaphylaxis. The first-line treatment is the administration of epinephrine (adrenaline), as it helps in constricting blood vessels, which increases blood pressure, relaxes the muscles in the airways, makes it easier to breathe and reduces swelling and hives. Epinephrine is usually administered via an auto-injector (like an EpiPen). After administration, the person should seek emergency medical help, even if symptoms appear to improve, as a biphasic reaction (a second wave of symptoms) can occur hours later.

Preventing anaphylaxis involves identifying and avoiding known allergens. People at risk should remember to carry an epinephrine auto-injector at all times and know how to use it. One should also remember to inform healthcare providers regarding their allergy before receiving medications or undergoing procedures to avoid unwanted reactions. Also, take care to read food labels and ask about the ingredients used when eating out. Some may benefit from allergen immunotherapy (desensitisation) under the supervision of an allergist. This therapy gradually introduces small amounts of the allergen to reduce sensitivity over time.

With prompt treatment, most people recover completely from anaphylaxis. However, the condition can be fatal if not treated quickly. According to studies, the mortality rate for anaphylaxis is low but not negligible, highlighting the importance of awareness and preparedness. Children, individuals with asthma, and those with a history of previous anaphylactic reactions are at a higher risk of severe outcomes. Continuous education, awareness, and preparedness can significantly reduce the impact of this condition.



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Indian-origin doctor convicted in U.S. for health care fraud conspiracies

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Indian-origin doctor convicted in U.S. for health care fraud conspiracies


Dr. Neil K. Anand conspired to distribute oxycodone outside the usual course of professional practice and without a legitimate medical purpose. File
| Photo Credit: AP

An Indian-origin doctor has been convicted by a U.S. Federal Jury for his participation in conspiracies to commit health care fraud by giving medically unnecessary prescription medications to patients and unlawfully distributing controlled substances.

Neil K. Anand, 48, of Bensalem, Pennsylvania, conspired to submit false and fraudulent claims to Medicare, health plans provided by the U.S. Office of Personnel Management (OPM), Independence Blue Cross (IBC) and Anthem for “Goody Bags” of medically unnecessary prescription medications.

These medications were dispensed to patients by in-house pharmacies owned by Dr. Anand, the Department of Justice said in a statement.

As the evidence at trial showed, the conspirators required patients to take the Goody Bags, which they did not need or want, to receive prescriptions for controlled substances.

In total, Medicare, OPM, IBC, and Anthem paid over $2.3 million for the Goody Bags, the statement said.

Dr. Anand also conspired to distribute oxycodone outside the usual course of professional practice and without a legitimate medical purpose. In furtherance of the conspiracy, unlicensed medical interns wrote prescriptions for controlled substances using blank prescriptions that were pre-signed by Dr. Anand.

Dr. Anand prescribed 20,850 oxycodone tablets for nine different patients, as part of the scheme.

After learning that he was under investigation, Mr. Anand concealed the proceeds of the fraud by transferring approximately $1.2 million into an account in the name of his father and for the benefit of his minor daughter.

Mr. Anand was convicted of conspiracy to commit health care fraud and wire fraud; three counts of health care fraud; one count of money laundering; four counts of unlawful monetary transactions; and conspiracy to distribute controlled substances.

He is scheduled to be sentenced on August 19 and faces a statutory maximum penalty of 130 years in prison.

A Federal District Court Judge will determine any sentence after considering the U.S. Sentencing Guidelines and other statutory factors.



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