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

[Vapnope]

@Sharma Ji @jamahir The other day i was discussing with my friend (who is a doctor) that government should come up with income census of people in Pakistan and people should pay for the treatment as per their income class until the government can provide free health care for everyone.

 

[Sinnerman108]

It is a terrible disease i have seen first hand,

It takes a toll on the patient, and the family in ways one cannot imagine.

 

[waz]

Bless the child to heaven, bless all children.

 

[Sharma Ji]

I know there is a free treatment in India and also in Pakistan and trust me there are ways to improve the health care sector both in India and Pakistan. On a surface it looks that it is beyond the muscle of respective governments but there is a LOT that can be done without breaking your bank.

Bhai, I'm as saddned to learn of this as the next guy.. and it is an ongoing political debate in a lot of countries

But then, no matter how tragic.. one must common sense and deal with the harsh realities of life..

Our friend the communist seems to believe there is a magic pill or silver bullet to all that ails mankind.. well intentioned as it might be, it is still delusional thinking.

Job, house, food, car, clothes, education, money, medicine.... all free and equally given to every single person.. You think that would make people happy ?

 

[Drizzt]

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

I was looking at what makes this injection so expensive, it is actually a miraculous injection. It actually adds a strand of missing DNA to all Neuron cells.
https://www.factchecker.in/explaine...oved-by-nhs-costs-rs-18-crore-in-india-735002

Researchers at the Indian Institute of Technology (IIT) Bombay and Tata Memorial Centre (TMC) should try making a indigenous one. They are working on similar Gene Therapy treatment of Cancer patients. Maybe this can be made in less than 1 crore.
https://www.thehindubusinessline.co...herapy-developed-in-india/article34764130.ece

 

[jamahir]

Life isn't fair, got enough experience with that fact...

If you have been personally unfairly dealt with then it should be natural to expect you to be empathetic to the needless death of this boy.

It is chiseled in the sky by the tools of common sense.

1. Show me such a picture.

2. So "common sense" should mean that this boy die because of the stingy economic system of his country ?

It's not as simple as that... have you ever run a business of any sort ?

I was the technology co-founding partner of a computing company some years ago. And I hope to start a company in some months again in the computing sector. Also, I am much inspired by the Hindi film Rocket Singh : Salesman of the Year which is a must-watch to anyone who wants to start a company. But what's your point ?

What is artificial is some godlike government stepping in and deciding that you, for example, being a much smarter, much more productive person being stolen from by a retard leech like me who has no skills or much less smarts and is not as productive.

How do you know that this six-month-old boy would have gone on to become a leech ? You should read the "potential" comment I left in the OP.

@Sharma Ji @jamahir The other day i was discussing with my friend (who is a doctor) that government should come up with income census of people in Pakistan and people should pay for the treatment as per their income class until the government can provide free health care for everyone.

But why do not see the "until" part to be able to start right now ? What difficulties do you see for free healthcare to be not started now ? In India there have been quite a few middle class people whose families had multiple COVID patients and so went economically distressed.

 

[jamahir]

I was looking at what makes this injection so expensive, it is actually a miraculous injection. It actually adds a strand of missing DNA to all Neuron cells.

Ah, okay. Thanks for the explanation.

https://www.factchecker.in/explaine...oved-by-nhs-costs-rs-18-crore-in-india-735002

Later, the Indian government, on the request of her parents, waived off Rs 6 crore GST on the import of the drug from the US.

How kind of the government.

"Zolgensma is consistently priced worldwide under a value-based framework, however final pricing and reimbursement decisions are determined at the local level," the spokesperson added.

The "local level" part. If the Indian government wants it can pay for licensed local production the same way it does for foreign armaments.

Researchers at the Indian Institute of Technology (IIT) Bombay and Tata Memorial Centre (TMC) should try making a indigenous one. They are working on similar Gene Therapy treatment of Cancer patients. Maybe this can be made in less than 1 crore.

They should.

https://www.thehindubusinessline.co...herapy-developed-in-india/article34764130.ece

If the trials are successful, it may save millions of lives by making the treatment available in India at an affordable cost. It is a research of IIT-B that is expected to touch the lives of all,” Chaudhuri said.

Nice !

 

[Sharma Ji]

If you have been personally unfairly dealt with then it should be natural to expect you to be empathetic to the needless death of this boy.



1. Show me such a picture.

2. So "common sense" should mean that this boy die because of the stingy economic system of his country ?



I was the technology co-founding partner of a computing company some years ago. And I hope to start a company in some months again in the computing sector. Also, I am much inspired by the Hindi film Rocket Singh : Salesman of the Year which is a must-watch to anyone who wants to start a company. But what's your point ?



How do you know that this six-month-old boy would have gone on to become a leech ? You should read the "potential" comment I left in the OP.

Yaar, none of what I wrote was specifically about that boy. His passing was most tragic.

Was talking generally about the realities of life and finances etc and that I know better than to expect the govt to help everyone. Why did the kerala communist govt fail here anyway ?

I think you may be suffering from some kind of psychosis if you think a country like India... 1 billion plus and poor overall can afford free treatment of this kind.

How about the generosity of all the people who pooled their resources to raise so much money ? Tax breaks for those who contributed a significant amount.. now that is something the govt can and should do for those noble souls.

On a mobile and out and about atm, can't post a bigger reply, really annoying typing on a phone.

 

[Vapnope]

But why do not see the "until" part to be able to start right now ? What difficulties do you see for free healthcare to be not started now ? In India there have been quite a few middle class people whose families had multiple COVID patients and so went economically distressed

Financial constraint for a third world country. Like i said earlier, i would like free healthcare from today however what i am suggesting seems more practical in case governments have financial constraints.

 

[PakFactor]

@Sharma Ji @jamahir The other day i was discussing with my friend (who is a doctor) that government should come up with income census of people in Pakistan and people should pay for the treatment as per their income class until the government can provide free health care for everyone.

If I'm not mistake many countries in Europe have that set up based on income.

 

[jamahir]

Why did the kerala communist govt fail here anyway ?

Yes it failed. The reasons I don't know.

Like i said earlier, i would like free healthcare from today

Was talking generally about the realities of life and finances etc and that I know better than to expect the govt to help everyone.

Financial constraint for a third world country.

A small list of the costing of Indian government's spending on some of the unnecessary things :

​

1. Vallabhbhai Patel's statue : the world's tallest statue. Cost = 2063 crores.​

​

2. Two Air India One aircraft : For the use by the PM, President and Vice President. Cost = 8400 crores.​

​

3. The Central Vista "redevelopment" project in Delhi that will include a new PM house. Cost = 13,000 crores.​

​

The cost of the medicine was just 18 crores. Surely the central government, even if a third-world government, could have easily obtained the medicine in time to save the boy's life. Why did it not ?

 

[Sharma Ji]

A small list of the costing of Indian government's spending on some of the unnecessary things :
1. Vallabhbhai Patel's statue : the world's tallest statue. Cost = 2063 crores.2. Two Air India One aircraft : For the use by the PM, President and Vice President. Cost = 8400 crores.3. The Central Vista "redevelopment" project in Delhi that will include a new PM house. Cost = 13,000 crores.The cost of the medicine was just 18 crores. Surely the central government, even if a third-world government, could have easily obtained the medicine in time to save the boy's life. Why did it not ?

You're not going to like my reply but those "unnecessary things" are investments which will serve the nation and last a long long time.

The statue will earn revenue

THe PM house is not a vanity project of Modi, we're a democracy, next thing you know it could be Didi or some commie living there during their term if they are democratically elected as PM.

The planes may last 50 odd years (long past Modi's time on earth.. unless he is truly a master yogi lol) and imo as a major emerging nation of a billion plus, our heads of state, whoever they may be, deserve the best most secure transport.

You keep circling back to the poor kid though. Here's what it says about the condition the poor baby suffered from:

Spinal muscular atrophy affects 1 per 8,000 to 10,000 people worldwide.

There may be tens of thousands of such cases in India given our population, hardly anyone of those will be able to afford it but they don't make the news.

Yes, we can't afford it but expect prices to drop drastically in the decades ahead as tech advances. Tech poorer than in a kid's cheap toy today costed tens of thousands of in the 70s wrt personal computers, for example.

India's future = bright.

Jai Hind !

 

[jamahir]

THe PM house is not a vanity project of Modi, we're a democracy, next thing you know it could be Didi or some commie living there during their term if they are democratically elected as PM.

1. Help me understand. So for the lavish living of the PM, whether current or some future commie even, this boy had to die ?

2. About "democratically elected", the current party-based system in India with its many hierarchies and authority duplications, is not true democracy. It is an illusion of democracy. True democracy will be Direct Democracy like it was practiced in Libya in 2011 ( a party-less system and other simplifications ) and like it has been adapted in Venezuela. Elon Musk too speaks for Direct Democracy to be the governing system for near-future Mars settlements.

The statue will earn revenue

Then why Vallabhbhai Patel's statue ? Why not the real freedom fighter and revolutionary Bhagat Singh ? From my thread :

I will conclude with the last moments of Bhagat Singh’s life, as reported by his close associate Manmathnath Gupta, he writes:

“When called upon to mount the scaffold, Bhagat Singh was reading a book by Lenin or on Lenin. He continued his reading and said, ‘Wait a while. A revolutionary is talking to another revolutionary’. Bhagat Singh continued to read. After a few moments, he flung the book towards the ceiling and said, ‘Let us go’.” [Emphasis added]

This is the true legacy of Bhagat Singh which we need to commemorate.

The planes may last 50 odd years (long past Modi's time on earth.. unless he is truly a master yogi lol) and imo as a major emerging nation of a billion plus, our heads of state, whoever they may be, deserve the best most secure transport.

Then the two aircraft themselves could have been repurposed, existing Indian air force transport aircraft, with whatever security features newly acquired. Why the need for two new aircraft ?

There may be tens of thousands of such cases in India given our population, hardly anyone of those will be able to afford it but they don't make the news.

1. Then the best road taken immediately should have been acquiring the license for production in India. After all aren't foreign weapons so produced in India ?

2. For a general sense the Indian government should push for open source medicine formula for all such critical medicines.

 

[EasyNow]

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

Sorry buddy, but even the NHS, the epitome of free healthcare in the world, cannot afford these types of treatments. There are dozens of cases where people have gone abroad to pay for expensive treatments because the NHS is unwilling to provide it.

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


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

 

[Sharma Ji]

Help me understand. So for the lavish living of the PM, whether current or some future commie even, this boy had to die ?

2. About "democratically elected", the current party-based system in India with its many hierarchies and authority duplications, is not true democracy. It is an illusion of democracy. True democracy will be Direct Democracy like it was practiced in Libya in 2011 ( a party-less system and other simplifications ) and like it has been adapted in Venezuela. Elon Musk too speaks for Direct Democracy to be the governing system for near-future Mars settlements.

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

We have a functioning democracy, but a revolutionary like you wants to change everything and install some communist Direct Democracy.. whatever that means... don't work that way.

Then why Vallabhbhai Patel's statue ? Why not the real freedom fighter and revolutionary Bhagat Singh ?

Maybe they'll make another one of him too

Then the two aircraft themselves could have been repurposed, existing Indian air force transport aircraft, with whatever security features newly acquired. Why the need for two new aircraft ?

These are very specialized aircraft for vips. Two because if one is in maintainence etc there's one ready to go.

. Then the best road taken immediately should have been acquiring the license for production in India. After all aren't foreign weapons so produced in India ?

2. For a general sense the Indian government should push for open source medicine formula for all such critical medicines.

Treatment and cures like these cost in the 100s of millions, maybe more to develop. This is also a very uncommon condition.

The world can't make everything free for humanity's sake.