@@gautamvarma1429 yes it is so sad it doent means that ki we dont have to save a child for 16 crores we have to but.... government has to assure that then no child will be dead because of not getting any money
@@kishankini3406 uska matlab hai yaha ek bacho ko bachna ke liya 16 crore istamal ho raha hai aur waha kuch bacha 1 lakh na hona ke karan choti bimari se mar jata hai aur ye bacha 16 crore mein bhi thik nahi hoga toh fhir rather than spending crore on this child we may give this to other poor childrens and save many lives rathee than one thats what he want to say
Absolutely ,,,, but the tax is on imported drug once you wave off everybody will take advantage it's very hard to give advantage to specific company!! Tomorrow others will ask cause there is cancer which is also.very fatal!!
@@thereporter9921 i like ur point but bro.. Even though we know that each amd every life is precious and all those fatal disease donot looking at ur bank account details.. It can hit anyone rich ir poor.. For sake of arguments if we consider that .. For country revenue we need tax money.. Then who is telling to remove all tge taxes just remove the tax from these types if medicines.. So that a poor family can afford it for their loved one once lose will never return to them even though he she can be saved. Justice should be done to each and everyone life..take care Assalamu alaikum friend.
@@mohdaamir8574 government should pay for rare diseases. Its not that hard just increase tax in luxurious items and create a fund for rare expensive medicines ,, cause not everytime crowdfunding is not feasible ,,,...
It's expensive not because of pharmaceuticals.. this is a research drug. That too research in usa .. so price of the drug is the amount spend on the research of this medicine . As they waived of the taxes it clearly shows thel pricing is completely the research cost ( infrastructure, techniques, material, chemicals, equipments, many more).. this drug just didn't come in a day. Might have taken months , years.. so all these are included in the price
@@MahimDashoraHackR then there is word called patent. Company who developed they got exclusive right to sell as well as can include all the cost in pricing till the expiry of patent. After expiry of patent then the price automatically got lower coz now any company can make and sell those medicine, this is what is called generic medicine. Example- paracetamol.
And here my Father has been adviced for a combine liver kidney transplant which costs around 45 lakh . We are trying our level best to arrange the amount but it's a huge amount for a middle class family.
The Most Developed and Educated State can't create these types of drugs... Why? Is isn't that irony??? Also a socialist state come together and make Westerners more rich shameful for great Karl Marx
@@debendubarman5253 First you should know about the drug and disease try to study about it ..Kerala is also a state of India .. why other state cannot it's all about our system What about the central government !?
There is a case in kerala as well, and thankfully some regional main stream medias have took the matter to the public.. But why is it so expensive? Even if it cost so much to the research and development of the medicine what is the purpose of having it if people can't afford it.
That was about reproductive fitness. Poor have more kids than rich. The reason behind every problem is OVER POPULATION. If the population of the world would be quarter of what it is now. Then most people will be happy and can afford every facilities. I FIRMLY BELIEVE THANOS IS RIGHT🙃
@@hydrazene367 If I had the power of Thanos, then in each species in the universe I would have made half of the population as well as the half of each coming generation sterlised till the end of time. Restricted reproduction, controlled population, enough resorces for everyone for ever.
@@aithi2694 "survival of the educated" is dumb. Look at the world. Many people who arent educated much are earning 100 times more than average people. Athletes, etc.
The Most Developed and Educated State can't create these types of drugs... Why? Is isn't that irony??? Also a socialist state come together and make Westerners more rich shameful for great Karl Marx
@@debendubarman5253 so you're just going around pasting same comment. lol. For the medicines lets say kerala is not good enough to make a cure, what abt your state? atleast we helped to save one life. dont want to brag abt it tho like this guy did +_+
@@Ambi999 Our state has great scientists and freedom fighters to name a few Netaji SUBASH who unite diverse indians to fight for our common glorious future , Satyendra Nath Bose who with einstein and others developed quantam physics !! a new branch of science
@@debendubarman5253 netaji is from cuttack and snb from klkta. so i don't really know where you are from. feel free to correct me. and now lets talk about the present. its true that there are guys who boast about kerala. I wont say you are jealous because you may feel offended :) . but its a fact that kerala has an upper hand on sustainability index, literacy etc. And the word best doesn't mean invincible but still better than trash. Tamilnadu can compete with kerala head to head but no other states. you can check PAI 2020. So just stop whining about it and nikal +_+
I dont understand why this drug is so costly when there would thousands of such children who needs it. Social donation is good but why can't we socially obligate the drug manufacturer to give it at humanly justifiable price.
Instead of blaming politicians, everyone loves to blame pharmaceutical companies/doctors/hospitals. Instead of voting for the right reasons, people vote for freebies, reservations, caste, and religion. BUT these same people expect world class healthcare and subsidised treatment for everyone. How is it possible?
You have no reason to drag reservation into this. Reservation is essential to make up for the centuries of caste related atrocities that were prevalent in India
@@bhuvaneshkrishna8474 If time bound, yes. If extended indefinitely until the entire system becomes a crutch that arbitrarily benefits certain sections beyond any logical timeframe, most definitely not. The rest of the world is marching forward while we are stagnating and regressing. Even so-called dominant communities are asking for reservations now. Things won't improve as long as government jobs are given out to pander to vote banks instead of being meritocratic.
@@beyondimagination1356 Bro, we should not generalize all the anthbhakts as one as they generalize us as anti-nationals or jihadis. There may be a lot of anthbhakts(maybe only a small percent) who have donated for this noble cause. So we shouldn't hurt them.💓
@@Maverick965 so talking against people who talk about disintegration of the nation is spewing hate now 🤣🤣 And then you lot have the gall to whine about not being allowed to excercise freedom of speech. The irony! 🤦♂️
I thought that the manufacturer will give expensive R&D and less demand as reason behind making it expensive but they just said 'we have made this drug expensive because patient's family have not other choice but to buy it from us to save their children' in a polite way.
Koi scam nahi hua. Sub ghaddaar congress aur AAP jhoota propaganda kar rahe he Pakistan ke kehne par. Pakistan nahi chahta Ram mandir bane aur Modi jee aur BJP dubara satta me aye
Don't comment if you haven't got a clue about the disease. It is one of the most rarest disease. People go on to blame pharmaceutical companies for the costs of such medicines but don't have a fucking clue how much money they spent for research and the employees they hire for these researches. The data acquired for this disease was very less and inorder to create this drug there was money spent on R&D by the company itself. Blame your government who neither helps these pharmacy companies in research by funding them nor they care about the lives of their citizens.
@@bourbon8705 exactly. People just assume if something's expensive, it's always because the seller or the manufacturer is greedy. Bro do you know how many billions and millions of dollars are spent world wide just to discover cures for such diseases? Atleast be thankful that a cure DOES EXIST instead of ruing on how much it costs.
I strongly condemn this....in india almost thousands of children can't get even food and die...we can save almost thousands of lives instead of one single life....the only difference is they are not mainstream...!!!
See the reason is very simple think about it the research team must have spent a lot of money and resources on this rare disease so they would obviously want the money back or there would be no profit and the company would not invest in such researches in the future
@@ananya1666 Most of the resources earned by these Pharma companies are used to buy back stocks of their companies. This R&D costs are overrated. Novartis still evergreens many drugs including the common insulin has earned billions in the last 2 years alone and this evergreening has been happening for decades now. Imagine the scale of profits.
@@ananya1666 That reasoning makes sense and ideally the cost that is incurred is spread over a period of time and that's fine. I'm a wedding photographer, I have equipment worth 25 lakhs and that does not meant that I charge 20 lakhs per wedding just because I didn't get any wedding customer in a year. A drug like this that has few takers, does not mean that you put the onus on the research and development cost onto such singular entities like this family. Imagine you having to go through for your loved one in your family. The best way of handling this is to have the govt intervene and take the tax payers money allocated for health of a country to fund this and not make the family beg around. Such intervention shouldn't happen when a need arises, this should have been thought through by the pharma company and the respective country's govt through a proper policy! So, even though a pharma company is not an NGO, they should get the ball rolling for such expensive (such an underrated word for this cost) so that when a situation arises like this, there is a plan to get the cost recovered.
With all the due compassion and love for the kid, I want to tell that the kid is privileged to be born in India, Had he taken birth in Bharat, the situation would have been entirely different( forget about 16 crores for treatment for a single kid, lakhs of children die for lack of mere two square meals a day).We are two different identities in one Nation, one for the rich and another for the poor. So much of social media campaign for crowd funding for a single kid, but millions of the same age left to fend for themselves. For them there is no social media campaign. They have right to live too. Am I right?? By saying so I am not against the kid getting the best healthcare possible.
your son is very lucky, i think you have also so much patience, because I have one he also suffered sma,type 1,unfortunately he expired his 5months age Good luck my boy
Happy for them but what about those who don't know what crowd funding is or how to start a crowd funding campaign? It's Government's responsibility to make it affordable and accessible to all.
Government don't even invest in education and health . They just do one two big things so their blind supporters get happy and vote them in next election.
This shows how the pharmaceutical industry is not here for serving the mankind... It's just plain business! Wow... Money.... money, money...we can already see the situation what is happening now !
You know the company has to spend a lot of money on R&D and then trials and also the demand is not high so the price is high.. But yes it shouldn't be costing this much.. Pharma industry is another drug mafia industry
We always fight for temple and mosque . Whereas research should be on developing substitute of zolesegma. So that no parents would have to beg for help.
Your son is soo luckey that he lives in India. ..😱👍💕❤💞 For the treatment of your cute son people are donating for the treatment. ..😍😘😙 It's call a power of love and humanity 😢😧 Love you beta ..😍😘 May god bless you.👐 with lots of happiness and blessings in your wonderful life 🙏🙋
Money is also something that buys you the thing you cherished more than anything in your life. Nowadays it can buy you love ,hate ,freedom etc etc list goes on Ironical and relativistic at the same time 😀
@@infamousviper1746 They used adenovirus. Covishield is also made from the same virus. Genetically modified virus. It is more like a vaccine than a drug. Clever idea, the virus will replicate so will the cells producing the required protein but still there are lot of risks involved. It would be interesting to know whether this so called drug really worked. This drug is for children below 2 years of age and child in the above video is three. Basically, his parents just went for it in order to save their child’s life. Just like any other parents will do for their children.
Those who are commenting saying that why it's too expensive... Only option is... You become scientist, do research... Come with cheaper price drug. It's as simple as that. Non science students can speak anything. Only science students understand the risk and time involved in such making.
They should factor in R&D, Raw materials, Transport and Taxes alongwith profit margin. But they shouldn't leech off money when some child could die. Profiteering shouldn't equate to Lack of empathy.
I appreciate the work of their parents and I would also request parents that in future just don't say it to the kid that we arranged u a 16 crore drug you should listen to us, don't make him feel that he is under any debt. And your efforts will be worth it❤️
16 crore......i hope the child always remember to be kind and gentle to others when he grows up..cause he got second life because of other people's kindness...
All the examples I have seen so far is of families of middle class or above. What happens when this is the case within families that are in or below the poverty line ?
Bro only middle class have problem below poverty people get free health care for free from sansthan made for poor people but middle class dont have that right to take money from a sansthan
@@spartangod6096 not in the case of such rare diseases. Basic medical care or maintenance -yes. This is even in the case of states where public medicine is in a better condition.
@@fornews9627 from even in rare genetic problems sansthan helps even ketto is like a sansthan like they help people below poverty line for like 1 crore ir something
Little off topic but if you plan to have kids after marriage, instead of matching kundlis; get a phylogenetic analysis done. These types of genetic diseases are common in people who marry someone they are related to (even if distantly related, such marriages should be avoided as the recessed genes get expressed.)
@Hollywood Movies Explained In Hindi then apne karma bhogo:/ thik se samjha rahi hai toh phaltu ki aakad kyun dikha raha hai. Invest your time doing something productive.
In kerala, i have recently heard about a child suffering from same conditions but 16cr is a Huge Barrier for them and many others... Taxes for this life saving drugs should not be charged and Zolgensma pharmacy should offer this for lesser and feasible price for common people. Indian government and everyone responsible for this huge nonsense of tax price should rectify this. Help these kids and their poor souls.... 🖤
I really want to know what crowdfunding they used ! Last year we were trying to raise funds for a patient with abdominal thrombosis . We could barely raise 2.5 lakh ! The man died !
Do you know what gene replacement therapy....do you know how long it will take to process , it's not a normal paracetamol......trust me have to put lot of effort to make this medicine reaerch...
Govt should fund for medication of such rare diseases ... Atleast 50% may be cuz not everyone would get such a massive help.... Also, if the company understands the "dramatical" transformation it brings to life of child, the company should also understand the "dramatical" psychological problem it would give to the family of that child because of such a huge cost....
And how do you expect the "company" to pay for the crores of rupees it has spent in RnD and paying salaries of its employed scientists? It's a business not a charity. We should appreciate the fact that people came together to help and things should end there!
@@anirbanraha8952 well it should lower the price.... May be this guy was lucky that he got help, not everyone would be.... 10-12 crores is tooo much.... Or government should set up a help page so that people can come forward and help such kids....
They'll see what they have to do. You weren't there in their hard times so now who are you to tell them what they should be doing now. Can't believe this guy is older than me but still so dumb as to make comments like this
this is a life changing drug, this should be made free. I hope India makes a similar drug and make it free/ affordable for humanity. And we are certain only India can do it
I wished if we could come forward for each and every one to those in need of 1 lakhs too. Not only for rare and viral video , but the mindset we seek must prevail over every people .
This One Boy Little Kid 💙is Lucky to get such a Huge Amount of Money. I suspect that the Ram Temple Land Scam is related to this. The Ram Trustees Board must have donated ₹ 16 Crores for this Drugs. OK, by the way the Boy is healed now. God bless the poor little boy.
@@mayankraghuvansh9596 thanks for your concern but there is no link for the payment.... But the family has approached kerala high court to adk the kerala government to pay for the treatment
The high price of a drug can not be explained by low demand alone or the miraculous experience post drug administration. Would have liked to learn if the cost of production, R&D cost related expenditure to produce it.
I hope this kid does not commit suicide in teenage due to love failure or any other issue. He is a 16 crore asset. If his father hit him and he dies what all investors gonna do to him.
Best thing about this is that the missing gene will be there with only one doss. And the patient gets fully functional normally after that. Thank you everyone who helped that child to live like rest of us❤❤❤
Why not go to America or Europe to get the injection, it save crores of rupees even after adding the cost of the trip. Am I missing something in giving this logic or is there a factor stopping the patient from making the trip.
@@mistermind8170 It's $ 2.125 Million in US. So it's around Rs.15.37 Crores without Adding Rs.6 Crore GST being Imposed in India. You can Check the Price on Novartis Official Website. 🧐 $ 2.125 Million Pakka
@@ratnamani8228 if the price was 15 cr and indian taxes are 6 cr then the price must be 21 cr not 18 cr I didn't get my info from internet which is giving conflicting information. I asked my friend who works for Novartis
Lucky parents and boy 👍, my 2 year old daughter is also facing west syndrome , she can't walk or talk like normal children, I don't know is this curable or not .. I don't know if she will live a normal life like us 🙏..
When he was saved by 16 crores
Many childrens died by just not getting 1 lakh
And nobody wanna talk about this, harsh but you spoke something important.
@@gautamvarma1429 yes it is so sad it doent means that ki we dont have to save a child for 16 crores we have to but.... government has to assure that then no child will be dead because of not getting any money
1 lakh? Context kya hain?
@@kishankini3406 uska matlab hai yaha ek bacho ko bachna ke liya 16 crore istamal ho raha hai aur waha kuch bacha 1 lakh na hona ke karan choti bimari se mar jata hai aur ye bacha 16 crore mein bhi thik nahi hoga toh fhir rather than spending crore on this child we may give this to other poor childrens and save many lives rathee than one thats what he want to say
Lucky one ! It's not his fault !!
Government should waive off all the GST and other taxes ATLEAST for such rare genetic disorders.
Absolutely ,,,, but the tax is on imported drug once you wave off everybody will take advantage it's very hard to give advantage to specific company!! Tomorrow others will ask cause there is cancer which is also.very fatal!!
@@thereporter9921 i like ur point but bro.. Even though we know that each amd every life is precious and all those fatal disease donot looking at ur bank account details..
It can hit anyone rich ir poor.. For sake of arguments if we consider that .. For country revenue we need tax money.. Then who is telling to remove all tge taxes just remove the tax from these types if medicines.. So that a poor family can afford it for their loved one once lose will never return to them even though he she can be saved. Justice should be done to each and everyone life..take care
Assalamu alaikum friend.
@@mohdaamir8574 government should pay for rare diseases. Its not that hard just increase tax in luxurious items and create a fund for rare expensive medicines ,, cause not everytime crowdfunding is not feasible ,,,...
Yes
Modi tax
It's expensive not because of pharmaceuticals.. this is a research drug. That too research in usa .. so price of the drug is the amount spend on the research of this medicine . As they waived of the taxes it clearly shows thel pricing is completely the research cost ( infrastructure, techniques, material, chemicals, equipments, many more).. this drug just didn't come in a day. Might have taken months , years.. so all these are included in the price
But now it's created and can be scaled from model .
@@MahimDashoraHackR yeah . That's what I'm also thinking 🤔
@@MahimDashoraHackR then there is word called patent.
Company who developed they got exclusive right to sell as well as can include all the cost in pricing till the expiry of patent.
After expiry of patent then the price automatically got lower coz now any company can make and sell those medicine, this is what is called generic medicine.
Example- paracetamol.
@@MahimDashoraHackR but if they lower the price they will get loss in money
@@datsrohan Why does the government Issues such Patent to a foreign country?
Government should rather replicate the drug and sell within the country
And here my Father has been adviced for a combine liver kidney transplant which costs around 45 lakh . We are trying our level best to arrange the amount but it's a huge amount for a middle class family.
God bless you and ur family 👪🙏 ❤
gov. hospital
Hope you're able to raise it.
Tweet and send message through insta to sonu sood
@J-TRAX 🙂 non alcoholic cirrhosis hai bhai.
Yes...We keralalites collected today this huge amount for one of our kids....May God help him...
Malayali poli allee😁 lets spread humanity.
Athe
The Most Developed and Educated State can't create these types of drugs... Why? Is isn't that irony??? Also a socialist state come together and make Westerners more rich shameful for great Karl Marx
@@debendubarman5253 First you should know about the drug and disease try to study about it ..Kerala is also a state of India .. why other state cannot it's all about our system
What about the central government !?
@@salihnh3498Isn't kerala 's system is strongest 🙃
Basically this means that there's no chance for the under privilege.
Be rich
This are the people who says after money will not give you happiness
Your statement is flawed. If everyone becomes privileged, will there be a reason to define the word "privilege"
@@LaxmikantKachhap Sahi hain sab gareeb agar ameer hi gae toh ye babu ke ghar pe jhadu kaun lagayega ?
@@mohammedbaigalt5494 Bilkul sai
Well the parents were educated enough to seek for help !! Think about the parents who were living in village 🥺😭 they won’t even knowing these 😭
Poor people die daily nobody Care's
There is a case in kerala as well, and thankfully some regional main stream medias have took the matter to the public.. But why is it so expensive? Even if it cost so much to the research and development of the medicine what is the purpose of having it if people can't afford it.
Poor people suffer like hell in this heaven life......
You are absolutely right bro
I live in village of Assam,my two nephews have the same disease but nobody help us
Earlier:- survival of the fittest
Now:- survival of the richest 😔
That was about reproductive fitness.
Poor have more kids than rich.
The reason behind every problem is OVER POPULATION.
If the population of the world would be quarter of what it is now. Then most people will be happy and can afford every facilities.
I FIRMLY BELIEVE THANOS IS RIGHT🙃
@@hydrazene367 If I had the power of Thanos, then in each species in the universe I would have made half of the population as well as the half of each coming generation sterlised till the end of time. Restricted reproduction, controlled population, enough resorces for everyone for ever.
I think its not survival of richest, but survival of educated. And uneducated villager won't even know to how to ask for help.
Well said
@@aithi2694 "survival of the educated" is dumb. Look at the world. Many people who arent educated much are earning 100 times more than average people. Athletes, etc.
18 crore were collected by kerala people... (Malayali poliyalle) in 7 days 💥 for a child of 2 year old who was diagnosed by SMA.. Hats off 💯❣️..
The Most Developed and Educated State can't create these types of drugs... Why? Is isn't that irony??? Also a socialist state come together and make Westerners more rich shameful for great Karl Marx
@Ameen Sha C athine njan theriyalla parange 🤣📌..
@@debendubarman5253 so you're just going around pasting same comment. lol. For the medicines lets say kerala is not good enough to make a cure, what abt your state? atleast we helped to save one life. dont want to brag abt it tho like this guy did +_+
@@Ambi999 Our state has great scientists and freedom fighters to name a few Netaji SUBASH who unite diverse indians to fight for our common glorious future , Satyendra Nath Bose who with einstein and others developed quantam physics !! a new branch of science
@@debendubarman5253 netaji is from cuttack and snb from klkta. so i don't really know where you are from. feel free to correct me. and now lets talk about the present. its true that there are guys who boast about kerala. I wont say you are jealous because you may feel offended :) . but its a fact that kerala has an upper hand on sustainability index, literacy etc. And the word best doesn't mean invincible but still better than trash. Tamilnadu can compete with kerala head to head but no other states. you can check PAI 2020. So just stop whining about it and nikal +_+
I dont understand why this drug is so costly when there would thousands of such children who needs it. Social donation is good but why can't we socially obligate the drug manufacturer to give it at humanly justifiable price.
Free market big business economic philosophy which have brought us to this absurd stage. Late capitalism is interesting
Wait till from rail to hospitals everything becomes private like in the USA.
Simply answer "Capitalism". I decide the price, and you decide whether you have money or not.
Effect of capitalism
Exactly
Gone are the days, now Wealth is Health
😎 👁️ correct
Stay away from refined oils and packaged food
@@Sujeesh_Bhosri true❤️👍👁️
@@Sujeesh_Bhosri what do you recommend to cook food with? Mustard oil?
@@kartikeyporwal3539Castrol 10w30 Engine Oil
So good to see humanity winning like this in the form of a kid happily running and playing around❤️
May the Almighty keep the child healthy and normal . God bless him and his parents.
Aamin
His parents are already blessed. They are well educated..Better keep your wishes for the needed ones
Thank Science.
Please think about rest of the patients and their survival.
Because the drug 'dramatically transforms' the patient's life they priced it so high. Let that sink in.
Capitalism !!!
@@gargitake9620 if there was communism then this medicine wouldn’t even exist
16 crore for one child while many children die due to lack of even 1 lakh rupees for treatment of their disease.
Your child die from this disease😢😢 I am also suffering from this disease😢
Instead of blaming politicians, everyone loves to blame pharmaceutical companies/doctors/hospitals. Instead of voting for the right reasons, people vote for freebies, reservations, caste, and religion. BUT these same people expect world class healthcare and subsidised treatment for everyone. How is it possible?
Why are you blaming politicians? Even with best healthcare or government, the drug will still cost the same anywhere in the world.
You have no reason to drag reservation into this. Reservation is essential to make up for the centuries of caste related atrocities that were prevalent in India
@@bhuvaneshkrishna8474 If time bound, yes. If extended indefinitely until the entire system becomes a crutch that arbitrarily benefits certain sections beyond any logical timeframe, most definitely not. The rest of the world is marching forward while we are stagnating and regressing. Even so-called dominant communities are asking for reservations now. Things won't improve as long as government jobs are given out to pander to vote banks instead of being meritocratic.
Very valid points
How is it possible in Europe and Canada...
Now this is great India
Proudly Indian
All those helping hands are real patriots
😂😂😂
@@indigobrain7450 ha tumhe to hasi aayegi modi bhakt
Andh bhakt just help in building lifeless mandirs instead of helping the innocent lifes
@@beyondimagination1356 Bro, we should not generalize all the anthbhakts as one as they generalize us as anti-nationals or jihadis.
There may be a lot of anthbhakts(maybe only a small percent) who have donated for this noble cause. So we shouldn't hurt them.💓
@@angeloj3139 👍👍
Imagine this guy becomes a genius when he grows up and changes the world.
Or just go into the rat race of JEE and NEET
Or worse, walks in the footsteps of sharjeel imam, umar khalid, the tukde tukde gang, etc. and the likes
Nature Dosent make all of us equal..
Some aren't meant to survive and pass on the thier genes
@@max9inmybday Or like you even, who know nothing except spewing hatred.
@@Maverick965 so talking against people who talk about disintegration of the nation is spewing hate now 🤣🤣
And then you lot have the gall to whine about not being allowed to excercise freedom of speech. The irony! 🤦♂️
I thought that the manufacturer will give expensive R&D and less demand as reason behind making it expensive but they just said 'we have made this drug expensive because patient's family have not other choice but to buy it from us to save their children' in a polite way.
no thats nt how it is
Lot of money is spent for R&D + rarity of this disease makes it 📈📈📈📈📈
@@murtkand3141 Yes it is.
@@Akarsh- They could have said the same thing instead of that crappy reason.
The Drug Costs the Same Amount as
the Land Scam by Temple Trust in
Ayodhya. 😁👍
is it a scam first place?
But much less than 2lakh crore scam by Italian mafia family of congress
@@austin426512 BJP IT cell भडवा spotted
Koi scam nahi hua. Sub ghaddaar congress aur AAP jhoota propaganda kar rahe he Pakistan ke kehne par. Pakistan nahi chahta Ram mandir bane aur Modi jee aur BJP dubara satta me aye
@G Modi jee bohat jald ghaddaar congress, AAP, TMC. AIMM etc parties ko desh se mukt kare ge. Modi he to mumkin he
Yesterday I have donated 4K one of the child who is suffering this disease. Baby is from Coimbatore her name is mithra.
God bless you
People of Kerala collect 18 cr in 7 days for the medicine.for help 1 and half year child Muhammad
Good for him but I didn't get your point how it's related 😑
@@mssuskar because that kid muhhamad also has the same spinal disease and he also need this 18cr medicine
@@beluga8427 Oh ok he just posted half the story but anyway good to know that both got their normal life back 👍
A Life saving drug shouldn’t be 16 crores!!!!
That's right
Don't comment if you haven't got a clue about the disease. It is one of the most rarest disease. People go on to blame pharmaceutical companies for the costs of such medicines but don't have a fucking clue how much money they spent for research and the employees they hire for these researches. The data acquired for this disease was very less and inorder to create this drug there was money spent on R&D by the company itself. Blame your government who neither helps these pharmacy companies in research by funding them nor they care about the lives of their citizens.
@@bourbon8705 these idiots don't understand the word RARE. These drugs are super expensive because we rarely have the diseases.
@@bourbon8705 exactly. People just assume if something's expensive, it's always because the seller or the manufacturer is greedy. Bro do you know how many billions and millions of dollars are spent world wide just to discover cures for such diseases? Atleast be thankful that a cure DOES EXIST instead of ruing on how much it costs.
I strongly condemn this....in india almost thousands of children can't get even food and die...we can save almost thousands of lives instead of one single life....the only difference is they are not mainstream...!!!
Yup .
1:00 Why is the drug priced so high?
Pharma Company: Because it dramatically transforms the quality of life.
What an excuse!!
Exactly it dsnt make any sense.. they r just doing plain business..
Well that's how all the greedy pharma companies are. I'm not even surprised
See the reason is very simple think about it the research team must have spent a lot of money and resources on this rare disease so they would obviously want the money back or there would be no profit and the company would not invest in such researches in the future
@@ananya1666 Most of the resources earned by these Pharma companies are used to buy back stocks of their companies. This R&D costs are overrated. Novartis still evergreens many drugs including the common insulin has earned billions in the last 2 years alone and this evergreening has been happening for decades now. Imagine the scale of profits.
@@ananya1666 That reasoning makes sense and ideally the cost that is incurred is spread over a period of time and that's fine.
I'm a wedding photographer, I have equipment worth 25 lakhs and that does not meant that I charge 20 lakhs per wedding just because I didn't get any wedding customer in a year.
A drug like this that has few takers, does not mean that you put the onus on the research and development cost onto such singular entities like this family. Imagine you having to go through for your loved one in your family.
The best way of handling this is to have the govt intervene and take the tax payers money allocated for health of a country to fund this and not make the family beg around. Such intervention shouldn't happen when a need arises, this should have been thought through by the pharma company and the respective country's govt through a proper policy! So, even though a pharma company is not an NGO, they should get the ball rolling for such expensive (such an underrated word for this cost) so that when a situation arises like this, there is a plan to get the cost recovered.
With all the due compassion and love for the kid, I want to tell that the kid is privileged to be born in India, Had he taken birth in Bharat, the situation would have been entirely different( forget about 16 crores for treatment for a single kid, lakhs of children die for lack of mere two square meals a day).We are two different identities in one Nation, one for the rich and another for the poor. So much of social media campaign for crowd funding for a single kid, but millions of the same age left to fend for themselves. For them there is no social media campaign. They have right to live too. Am I right?? By saying so I am not against the kid getting the best healthcare possible.
Absolutely correct..
💯 percent correct
I agree👍
Is India and bharat different????
your son is very lucky, i think you have also so much patience, because I have one he also suffered sma,type 1,unfortunately he expired his 5months age Good luck my boy
Happy for them but what about those who don't know what crowd funding is or how to start a crowd funding campaign? It's Government's responsibility to make it affordable and accessible to all.
Government don't even invest in education and health . They just do one two big things so their blind supporters get happy and vote them in next election.
@@abhayagarwal5097 gov is now spending 5.5% of budget on education
This shows how the pharmaceutical industry is not here for serving the mankind... It's just plain business! Wow... Money.... money, money...we can already see the situation what is happening now !
Exactly I was going to comment
You know the company has to spend a lot of money on R&D and then trials and also the demand is not high so the price is high.. But yes it shouldn't be costing this much.. Pharma industry is another drug mafia industry
Kya kare ye duniya paiso se hi chalti hai, kitne actors ne donations ke liye reqiest kiya, jab ki 16crore un sab ke liye kuch badi amount nhi thi
I cannot support this statement. Nobody in this world is here for charity. Not even the roadside vegetable seller not even Ambani.
Reaserch require lot of trial and errors , maintenance and so on
In Kerala 2kids in a poor family has this disease
We always fight for temple and mosque . Whereas research should be on developing substitute of zolesegma. So that no parents would have to beg for help.
You fought and did jehad for temple and mosque. Now that we have won, ur trying to justify ur nonsense which u did for decades
UK just negotiated low price of 10 cr per treatment with company and giving free to their public.
Wrong, price of this medecine in UK is £1.79 million equal to 14 crore
Healthcare shouldnt depend on my bank balance!
Your son is soo luckey that he lives in India. ..😱👍💕❤💞
For the treatment of your cute son people are donating for the treatment. ..😍😘😙
It's call a power of love and humanity 😢😧
Love you beta ..😍😘
May god bless you.👐 with lots of happiness and blessings in your wonderful life 🙏🙋
Money is something that robs the poor from the gift of life.
Was just about to type that.
Money is also something that buys you the thing you cherished more than anything in your life.
Nowadays it can buy you love ,hate ,freedom etc etc list goes on
Ironical and relativistic at the same time 😀
We want to know the progress in ayan through ur chanell time by time to know whether drug cure the disease or just waste of heavy amount
Thank you
Gene therapy is permanent illaj..
I would like to make your son the best in blood..
@J-TRAX 🙂 not necessarily , it can also be done after birth
@J-TRAX 🙂 you can put it into almost all cell using retrovirus as vector , even in this case they did same.
@@infamousviper1746 They used adenovirus. Covishield is also made from the same virus. Genetically modified virus. It is more like a vaccine than a drug. Clever idea, the virus will replicate so will the cells producing the required protein but still there are lot of risks involved. It would be interesting to know whether this so called drug really worked. This drug is for children below 2 years of age and child in the above video is three. Basically, his parents just went for it in order to save their child’s life. Just like any other parents will do for their children.
So happy to have donated for him, wishing him a great life ahead♥️
Those who are commenting saying that why it's too expensive... Only option is... You become scientist, do research... Come with cheaper price drug.
It's as simple as that. Non science students can speak anything. Only science students understand the risk and time involved in such making.
It’s just like pasting a DLL file which is missing from the setup folder (Pirated setup)
Not so easy like this my child
DAMN!!!😂😂
They should factor in R&D, Raw materials, Transport and Taxes alongwith profit margin.
But they shouldn't leech off money when some child could die.
Profiteering shouldn't equate to Lack of empathy.
I appreciate the work of their parents and I would also request parents that in future just don't say it to the kid that we arranged u a 16 crore drug you should listen to us, don't make him feel that he is under any debt. And your efforts will be worth it❤️
It all related to publicity
16 crore......i hope the child always remember to be kind and gentle to others when he grows up..cause he got second life because of other people's kindness...
Many cases doesn't get this type of attention and aren't so lucky. Gst should be waived off from this type of life savings medicine.
All the examples I have seen so far is of families of middle class or above. What happens when this is the case within families that are in or below the poverty line ?
Bro only middle class have problem below poverty people get free health care for free from sansthan made for poor people but middle class dont have that right to take money from a sansthan
@@spartangod6096 not in the case of such rare diseases. Basic medical care or maintenance -yes. This is even in the case of states where public medicine is in a better condition.
@@fornews9627 from even in rare genetic problems sansthan helps even ketto is like a sansthan like they help people below poverty line for like 1 crore ir something
Isse kam mein toh Sanjeevani Booti aa jati🙄
On a serious note, we need some serious regulations on the maximum profit margins on drugs in India !!
In india this type of pricing is not present. This drug is only available from a USA company.
A pondh paka bangali spotted 😂
The same case active in kerala a small boy called Mohammed and 6 days the donated 18 crores to that boy account & he will be safe today
There is no reason to put taxes on such drugs
BTW the research cost of this drug amounts to 2 billion dollar and took more than a few decades
Little off topic but if you plan to have kids after marriage, instead of matching kundlis; get a phylogenetic analysis done. These types of genetic diseases are common in people who marry someone they are related to (even if distantly related, such marriages should be avoided as the recessed genes get expressed.)
@Hollywood Movies Explained In Hindi then apne karma bhogo:/ thik se samjha rahi hai toh phaltu ki aakad kyun dikha raha hai. Invest your time doing something productive.
@@h3rwrl oh gyan pel rahi ho
In kerala, i have recently heard about a child suffering from same conditions but 16cr is a Huge Barrier for them and many others...
Taxes for this life saving drugs should not be charged and Zolgensma pharmacy should offer this for lesser and feasible price for common people. Indian government and everyone responsible for this huge nonsense of tax price should rectify this.
Help these kids and their poor souls.... 🖤
I think its 18 cr
I am happy to be one of those 65000 donors😀😀
Is our govt is mad why he put taxes on that 😢
If Drugs cost billions even less useful for some patients they Don't complain
But when doctors tell them their fees for surgery then they complain..
They should reduce the fees to compensate the taxes made out of all needed equipment and medical aid
I really want to know what crowdfunding they used ! Last year we were trying to raise funds for a patient with abdominal thrombosis . We could barely raise 2.5 lakh ! The man died !
Sorry to hear that. Fundraising in India depends on how strong your PR game is. Sad but true.... ☹️
The family has taken the help from Impactguru crowdfunding platform. They have been successful in raising this huge amount for other kids as well.
Life saving drugs such as this should be made generic
Do you know what gene replacement therapy....do you know how long it will take to process , it's not a normal paracetamol......trust me have to put lot of effort to make this medicine reaerch...
65000 goosebumps ❤️good hearts are still there
Govt should fund for medication of such rare diseases ... Atleast 50% may be cuz not everyone would get such a massive help.... Also, if the company understands the "dramatical" transformation it brings to life of child, the company should also understand the "dramatical" psychological problem it would give to the family of that child because of such a huge cost....
I think 16 crores could potentially save thousands of lives !!
Why to save that one ?
( Logical explanation welcomed)
And how do you expect the "company" to pay for the crores of rupees it has spent in RnD and paying salaries of its employed scientists? It's a business not a charity. We should appreciate the fact that people came together to help and things should end there!
@Dead_clasher i am not an idiot , think logically
@@dikshant7549 logically u r ryt... Though emotionally it sounds incorrect but practically I agree
@@anirbanraha8952 well it should lower the price.... May be this guy was lucky that he got help, not everyone would be.... 10-12 crores is tooo much.... Or government should set up a help page so that people can come forward and help such kids....
How is the child now ?
These parents and child must dedicate their lives for the welfare of soceity.
No.
They'll see what they have to do. You weren't there in their hard times so now who are you to tell them what they should be doing now.
Can't believe this guy is older than me but still so dumb as to make comments like this
Thats upto them...
He will live his life....
No, it's our duty to help them and everyone in need.
this is a life changing drug, this should be made free. I hope India makes a similar drug and make it free/ affordable for humanity. And we are certain only India can do it
6 crore gst wah nirmla amma
Onion ki tarha wo drug use nahi karti na isliye....
I wished if we could come forward for each and every one to those in need of 1 lakhs too. Not only for rare and viral video , but the mindset we seek must prevail over every people .
This One Boy Little Kid 💙is Lucky to get such a Huge Amount of Money. I suspect that the Ram Temple Land Scam is related to this. The Ram Trustees Board must have donated ₹ 16 Crores for this Drugs.
OK, by the way the Boy is healed now. God bless the poor little boy.
But that is not government's money, that is our money..whereas hajj houses and muslim waqf board has government's money, ask them dumbo
Such an emotional moment, God bless all those who have contributed in any forms - be it monitory or through healing prayers
Hope he is doing well
May god bless ur family those who have donated
Plzz there us a family in kerala who us in need of it......medicine
Can u plz help themmm.......
We did it❤
This company CEO is tamil atleast for india he can give in less price , 16 crores is too much
16 crore bahut zyada hai.Government must take action.
This is the magic of allopathy. Can baba ramdev do this with anulom vilom?
Abey yaar... tum log ek dusre ka ser phod do bss...
@@ishaankapil4982 haan, ser phodne ke baad stiches and blood loss ke liye blood lagaana ho toh sab hospital mein hoga, yoga shivir mein nahi
Babaji bolenge maa baap anilom vilom karte to bacche ko ye disease hi nahi aati 😅
@Bantai Rapper koi ayurveda ko bura nahi bol raha..... But baba doctors ka mazaaq udaata hai
@Bantai Rapper nityanandamshree 😂😂
Great, Abhi bhi Itne aache Log hai" to all 65000 People ❤🙏
@@ankitsinghrajput4668 Thanks for Correction ❤
Now the same disease is for a child in kerala.... Plz pray for him
can you share the link lets help the boy
@@mayankraghuvansh9596 thanks for your concern but there is no link for the payment.... But the family has approached kerala high court to adk the kerala government to pay for the treatment
There is one child in TN too
@@RajeshKumar-uq7yz OmG....... May that child recover soon
@@RajeshKumar-uq7yz bro whether the 16 cr is arranged?
God bless all those who have donated n saved this boy's life.
May God bless him 🙏🙏
Thank u people who helped him🥰🥰🥰.
We pray that your son will get healed soon and can live a healthy life...👍👍👍
I was one of them who donated in noble cause
Government should remove taxes on all medicines and drugs
God keep him safe.
Hello sir, how is he doing after taking this medicine??
The respective state should take the responsibility to treat such patients.For state it's not such a big issue.
And they say that money can't buy happiness
Those were olden days not now.......
May god bless him.
The high price of a drug can not be explained by low demand alone or the miraculous experience post drug administration. Would have liked to learn if the cost of production, R&D cost related expenditure to produce it.
So the gov needs 6cr on medicine too.........nice government system, god bless
good to see such videos gaining traction
Its expensive because someone's got to make money
No, it's because they have paid money to develop it.
No
I hope this kid does not commit suicide in teenage due to love failure or any other issue. He is a 16 crore asset. If his father hit him and he dies what all investors gonna do to him.
Allah bless the child and the supporters who contributed in his health
There is a fact 160 Million INR can save thousands lives instead of one
Thats 1,60,00,000
Best thing about this is that the missing gene will be there with only one doss. And the patient gets fully functional normally after that. Thank you everyone who helped that child to live like rest of us❤❤❤
A medicine shouldn't be that expensive, he was lucky that people donated but that won't happen in every case.
Why not go to America or Europe to get the injection, it save crores of rupees even after adding the cost of the trip.
Am I missing something in giving this logic or is there a factor stopping the patient from making the trip.
Prices in US are Unregulated.
It Costs even more in US even
with Low Taxes. 🤷♀️
@@ratnamani8228 I checked even if one goes to us and gets the injection it will be cheaper
I guess the boy can't travel so long in this condition!
@@mistermind8170 It's $ 2.125 Million
in US. So it's around Rs.15.37 Crores
without Adding Rs.6 Crore GST being
Imposed in India. You can Check the
Price on Novartis Official Website. 🧐
$ 2.125 Million Pakka
@@ratnamani8228 if the price was 15 cr and indian taxes are 6 cr then the price must be 21 cr not 18 cr
I didn't get my info from internet which is giving conflicting information. I asked my friend who works for Novartis
Why are there heavy import taxes on this drug??
I still don’t get why this is so expensive
hanuman ji aane jane ka kharcha hai
Just for business
they are researching since many years.
Low demand
May he have very happy life ahead
Best wishes 💝
If he's not going to be fine then what's the use of spending crores ? Could have helped other kids
Lucky parents and boy 👍, my 2 year old daughter is also facing west syndrome , she can't walk or talk like normal children, I don't know is this curable or not .. I don't know if she will live a normal life like us 🙏..
Where is our feku chacha?😂😂😂
thank you 65k peoples