India - Six-month-old with Spinal Muscular Atrophy dies in Kerala amid crowdfunding efforts

[jamahir]

Sorry buddy, but even the NHS, the epitome of free healthcare in the world, cannot afford these types of treatments.

Shouldn't the epitome of free healthcare be Cuba ?

There are dozens of cases where people have gone abroad to pay for expensive treatments because the NHS is unwilling to provide it.

Sure, lot of those Britishers come to India to avail of India's medical tourism industry but these cases are obviously payment-based.

In reality, when healthcare is provided free to everyone the govt has to be even more careful about how it allocates resources.

So being careful means sacrifice of some who could have been treated ?

That's the problem with socialist ideology - it's generous with no idea how it will pay for things.

I will reply to this after some more thought.

That boy did not die because they're making some new buildings for the government. That is an absurd statement.

My point is, didn't the government have 18 crore rupees to buy the medicine when it is spending lavishly for those other non-critical things ?

 

[EasyNow]

Shouldn't the epitome of free healthcare be Cuba ?



Sure, lot of those Britishers come to India to avail of India's medical tourism industry but these cases are obviously payment-based.



So being careful means sacrifice of some who could have been treated ?



I will reply to this after some more thought.



My point is, didn't the government have 18 crore rupees to buy the medicine when it is spending lavishly for those other non-critical things ?

Would Cuba have afforded this child this treatment? No.

And being careful doesn't mean sacrificing a child, it means you have to consider every expense carefully. As a health minister would you sanction treating 10 children with this medication or build a new hospital with the same money - treating thousands.

 

[jamahir]

Would Cuba have afforded this child this treatment? No.

Well, I don't know Cuba's experience with this disease.

And being careful doesn't mean sacrificing a child, it means you have to consider every expense carefully. As a health minister would you sanction treating 10 children with this medication or build a new hospital with the same money - treating thousands.

Sixteen crores for each dose so let's say it takes three doses for the cure so that makes it 48 crores per patient. And ten such patients will take the cost to 480 crores.

Now as the health minister I would advise my Prime Minister who is spending 13,000 crores on the unnecessary-at-the-moment Central Vista government buildings "redevelopment" project in Delhi, to immediately divert 480 crores from that project towards treating those 10 children with SMA.

Actually yes, just like former BJP member and now TMC member Yashwant Sinha said to PM Modi, and you too indicated it generally, the Central Vista project should be scrapped and the 13,000 crores minus 480 crores be rescheduled towards building a new free cancer and kidney hospital plus perhaps petitioning the WHO for it to prevail upon whoever makes SMA medicine to provide the formula to the Indian government at a reasonable cost.

 

[EasyNow]

Well, I don't know Cuba's experience with this disease.



Sixteen crores for each dose so let's say it takes three doses for the cure so that makes it 48 crores per patient. And ten such patients will take the cost to 480 crores.

Now as the health minister I would advise my Prime Minister who is spending 13,000 crores on the unnecessary-at-the-moment Central Vista government buildings "redevelopment" project in Delhi, to immediately divert 480 crores from that project towards treating those 10 children with SMA.

Actually yes, just like former BJP member and now TMC member Yashwant Sinha said to PM Modi, and you too indicated it generally, the Central Vista project should be scrapped and the 13,000 crores minus 480 crores be rescheduled towards building a new free cancer and kidney hospital plus perhaps petitioning the WHO for it to prevail upon whoever makes SMA medicine to provide the formula to the Indian government at a reasonable cost.

I agree, India should not be wasting money on vanity projects, particularly when there is still massive poverty.

Although, I don't think it's helpful to conflate the budget of one with the other. What will happen next? No independence Day celebrations, no fireworks, no decorations for Eid - everything has it's place. But yes the money for that statue is a scandal.

 

[Ali Tariq]

And just today YouTube recommended this video

 

[jamahir]

I agree, India should not be wasting money on vanity projects, particularly when there is still massive poverty.

Indeed. It's a criminal waste.

Although, I don't think it's helpful to conflate the budget of one with the other. What will happen next? No independence Day celebrations, no fireworks, no decorations for Eid - everything has it's place.

1. About Independence Day, I don't know of any ID speech from the Red Fort where the Prime Minister has spoken of socio-economic inadequacies in the country that are to be removed. For example, the astounding and tragic figure of 300,000+ Indian farmers having committed suicide between 1995 and 2017. Or the death by hunger of a migrant laborer woman in a railway station in Bihar state. Though I have never watched the ID speech by the PM I don't think the speech would be anything but a feel good one.

2. You should live in India to see and feel the utter chaos of the Diwali fireworks every year. Diwali, or its actual name "Deepawali", means the Festival of Light, the "Deepa" meaning clay lamp. Fireworks came from China and were never part of Diwali until maybe early this century. I don't know. But for that one week ( earlier it was 10 days ) of Diwali it is total chaos and pollution. People have been blinded by fireworks, hurt by wayward rockets, engulfed by the smoke and deafened by the three-minute noise of a 1000-cracker 'ladi'. You should see the panic of cats. Some days ago the Supreme Court told off a lawyer representing some fire crackers manufacturers who wanted even the ( minimal ) curbs on firecrackers in Delhi. The manufacturers found some unscientific study by IIT Kanpur which said that pollution by fireworks is not even in the top 15 sources of pollution. The SC asked whether it requires a special study by an IIT to decide if Diwali fireworks lead to pollution. And please read this from 2015 :

As the festival season arrives, fear of pollution reaching abysmal levels is on a rise.

In a first-of-its-kind case, parents of three toddlers, aged between six and 14 months have approached the Supreme Court seeking its intervention to stop the use of loud firecrackers during Dussehra and Diwali, asserting their children’s right to be brought up in a pollution-free environment.

According to news published by Hindustan Times, petitioners Arjun Goyal, Aarav Bhandari and Zoya Rao Bhasin – all between six to 14 months have sought the apex court’s intervention as authorities have failed to take adequate measures to curb air and noise pollution.

“They are foremost prone to lung disease, asthma, coughing, bronchitis, retarded nervous system development and cognitive impairment,” the petitioners submitted and urged the court to issue immediate orders restraining government agencies from issuing licences for sale of firecrackers in the Capital.

Vulnerable infants

The widespread use of firecrackers in Delhi – declared the most polluted city in the world by the World Health Organization – during the festive season exposes vulnerable infants to severe diseases such as asthma and worsens their lung conditions, the petition said.

Asserting their fundamental right to a clean and healthy environment under Article 21, the toddlers said, “The right to breathe clean air is essential for a conducive environment for growth and development.”

Though the Supreme Court has declared the state as the protector of natural resources, the latter has failed to perform its job effectively, the petition alleged.

Authorities haven’t laid down any guidelines to ensure that manufacturers or sellers conform to environmental norms while distributing these crackers. A look at the licences will “show that environmental and pollution concerns are furthest from the minds of the Government representatives,” the petition said.

Several reports from health journals and research papers were given to the court in support of the petition to show how pollutants released from fireworks worsen the lung conditions of children.

“The imminent advent of festivals that involve widespread fireworks are a clear and present danger to the health of the Applicants and the other children who are residents of Delhi,” the petition said.

It cited a study in Bangalore that shows how a widespread awareness campaign and enforcement mechanisms led to a sharp 32 per cent decrease in pollution levels there during Diwali time in 2013 compared to a year ago. The petition said the ruling brought some respite to Delhi residents but studies thereafter revealed that cases of wheezing, respiratory diseases, exacerbation of bronchial asthma and bronchitis increase by 40 per cent during Diwali.

Meanwhile, the National Green Tribunal on Monday sought response from the Union Government on a lawyer's plea seeking designated time and place for use of firecrackers during festivals like Diwali.

A bench headed by Justice U D Salvi issued notice to Union Ministry of Environment Forests and Climate Change (MoEFCC), Ministry of Commerce and Industry, Petroleum and Explosives Safety Organisation and others while seeking their reply by October 12.

According to Economic Times, the plea moved by advocate Piyush Singh says there is severe impact of firecrackers on the environment and causes air and noise pollution. Singh had contended in his plea that the chemicals released into the environment due to bursting of crackers caused negative effects on the health and "every individual especially children, pregnant women and old people are at an increased risk of suffering health complications due to it".

The petition has also referred to a Supreme Court judgement that said, "In no religious text book it is written that Diwali has to be celebrated by bursting crackers. Diwali is considered as a festival of lights, not of noise."

Earlier in 2005, the Supreme Court had issued directions to restrict the use of fireworks and fixed 10 pm deadline for their use. It also changed the basis for evaluating fireworks from the noise level to its chemical composition.

Fireworks should be banned. I think that has already been done in China.

But yes the money for that statue is a scandal.

Agreed.

 

[prashantazazel]

Six-month-old with Spinal Muscular Atrophy dies in Kerala amid crowdfunding efforts

Recently, Rs 18 crore was raised through crowdfunding for the treatment of one-and-a-half-year-old Muhammed in Kannur, who was also suffering from the same genetic disease.

IMAGE FOR REPRESENTATION
NEWS DEATH THURSDAY, JULY 22, 2021 - 10:47
PTI Follow @PTI_News

A six-month-old infant in Kerala, who was battling Spinal Muscular Atrophy (SMA) and undergoing treatment since birth, succumbed to the rare genetic disorder in northern Kozhikode district, despite a large amount raised for his treatment. Imran, son of Arif, an autorickshaw driver hailing from Perinthalmanna in Malappuram district, breathed his last on July 20, Tuesday night at the Kozhikode government medical college.

SMA affects the central nervous system and causes wasting of muscles used for movement. Imran had been under treatment since he was 17 days old, his family said. His death came days after a large amount of money had been raised through crowdfunding to purchase the Zolgensma Onasemnogene injection, one of the most expensive medicines in the world, for his treatment. One dose of the injection costs Rs 16 crore in India.

Imran's family was struggling to raise the rest of the amount to import the medicine from abroad but was hopeful that they could make it happen soon. The Kerala High Court also recently directed the state government to set up a five-member medical board to examine Imran’s case, based on a plea by his father. Arif had moved the High Court earlier this month seeking free treatment for his son as the medicine costs around Rs 16 crore and he had no means to raise that much money. He had approached the court claiming that he cannot ensure his son's treatment without the support of the state government.

The state government, in a statement filed in court, however, said that neither the Health Department nor the Kerala Social Security Mission (KSSM) was in a position to extend financial support and bear the huge cost of the treatment. Recently, Rs 18 crore had been raised through crowdfunding for the treatment of one-and-a-half-year-old Muhammed in Kannur, who was also suffering from the same genetic disease.

---

Jamahir's comment : So this infant - Imran - died not because there was no treatment but because the parents did not have money to pay for the expensive medicine.

It is nice that some people had arranged some money for Imran's treatment but unfortunately that didn't come in time. But healthcare is really the job of the government which should make it free for every citizen.

Imran died unfairly at six months without being given the chance to realize his potential.

The traditional money system should be abolished.

@Sharma Ji @padamchen

State can provide for healthcare of simple/basic diseases. Not for everything.
If you want to cover rare diseases, the state will go bankrupt.
There are some government run centres in India that cover rare/complicated diseases. For eg -AIIMS, JIPMER,,VMMC,PGI,etc.
In fact, these days, the government run tertiary health care centres do cover most treatments. But they will at times provide a lower quality of treatment due to lack of resources. They also suffer from capacity issues.

A poor country like ours can't cover for all diseases for everyone. We can and do adopt a primary care approach, which benefits a large number of people.
Also, I keep hearing that you want to eliminate money. Then what would provide a store of value for labor?
If I treat 20 people in a day, and they give me a 100 kg of rice in return, what am I supposed to do with that?

 

[jamahir]

State can provide for healthcare of simple/basic diseases. Not for everything.
If you want to cover rare diseases, the state will go bankrupt.

But the state found the time and money to spend on the items I mentioned in post #26.

And please also read post #33.

There are some government run centres in India that cover rare/complicated diseases. For eg -AIIMS, JIPMER,,VMMC,PGI,etc.

I see.

In fact, these days, the government run tertiary health care centres do cover most treatments. But they will at times provide a lower quality of treatment due to lack of resources. They also suffer from capacity issues.

Well, the Ayushman Bharat program is ineffective generally.

Also, I keep hearing that you want to eliminate money. Then what would provide a store of value for labor?
If I treat 20 people in a day, and they give me a 100 kg of rice in return, what am I supposed to do with that?

You are right. That 100 kg of rice would be through the barter system which becomes impractical many times at personal level and generally at societal level. So I have proposed a new economic system in this thread. Please read the OP and the subsequent discussion and leave your comment there.

 

[jamahir]