Why Is Zolgensma, Drug Worth Rs 16 Crore, This Expensive?

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  • Опубліковано 27 сер 2024
  • Recently a three year old kid, Ayaansh, got world's most expensive medicine Zolgensma administered in Hyderabad. We look at the reasons behind its high price.
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КОМЕНТАРІ • 1 тис.

  • @daddygamer3978
    @daddygamer3978 3 роки тому +1661

    Ur son is lucky .. people donated for him
    Not everybody gets donations to live...
    Edit: everybody should have rights from god to live till old age .. so he/she could see this beautifull 🌎. Jisi madad ki jaye kro ,jitna ho sake kro .

    • @aartichoudhary22
      @aartichoudhary22 3 роки тому +10

      True

    • @rex_schd
      @rex_schd 3 роки тому +61

      True I was thinking the same In a country where you don't evrn get hospital bed .getting 18 crore medicine for free is super blessing

    • @jeevanand88
      @jeevanand88 3 роки тому +22

      Exactly, my colleague son has the same disease, he's 6months old! Same medicine is suggested for him... 16cr is simply not reachable. So we are doing fund raisers. Government shud waive off their taxes on these rare medicines

    • @daddygamer3978
      @daddygamer3978 3 роки тому +5

      The main thing that make mind berzerk .that in india 🇮🇳 they do advertisement for donations thru public and public is the one who donates but what about big giants politicians , ambanis ? And more rich giants .
      They only donate to some small charity and still dont knw where that money goes.

    • @literallynoone3751
      @literallynoone3751 3 роки тому +4

      I knew a person who needed about 18 crore for his son's treatment but could only get donation of two crore. This boy is lucky

  • @aryanchoudhary8824
    @aryanchoudhary8824 3 роки тому +887

    When he was saved by 16 crores
    Many childrens died by just not getting 1 lakh

    • @gautamvarma1429
      @gautamvarma1429 3 роки тому +169

      And nobody wanna talk about this, harsh but you spoke something important.

    • @aryanchoudhary8824
      @aryanchoudhary8824 3 роки тому +49

      @@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
      @kishankini3406 3 роки тому +3

      1 lakh? Context kya hain?

    • @spartangod6096
      @spartangod6096 3 роки тому +36

      @@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

    • @doctorstrange5299
      @doctorstrange5299 3 роки тому +10

      Lucky one ! It's not his fault !!

  • @Akarsh-
    @Akarsh- 3 роки тому +1216

    Government should waive off all the GST and other taxes ATLEAST for such rare genetic disorders.

    • @thereporter9921
      @thereporter9921 3 роки тому +35

      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!!

    • @mohdaamir8574
      @mohdaamir8574 3 роки тому +22

      @@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.

    • @thereporter9921
      @thereporter9921 3 роки тому +21

      @@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 ,,,...

    • @digitalindia6581
      @digitalindia6581 3 роки тому +1

      Yes

    • @MoneyWayschannel
      @MoneyWayschannel 3 роки тому +5

      Modi tax

  • @Navya-Tasa
    @Navya-Tasa 3 роки тому +118

    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
      @MahimDashoraHackR 3 роки тому +12

      But now it's created and can be scaled from model .

    • @swayam584
      @swayam584 3 роки тому

      @@MahimDashoraHackR yeah . That's what I'm also thinking 🤔

    • @datsrohan
      @datsrohan 3 роки тому +28

      @@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.

    • @kailashbazala2800
      @kailashbazala2800 3 роки тому +3

      @@MahimDashoraHackR but if they lower the price they will get loss in money

    • @kartikrana1080
      @kartikrana1080 3 роки тому +3

      @@datsrohan Why does the government Issues such Patent to a foreign country?
      Government should rather replicate the drug and sell within the country

  • @sri2978
    @sri2978 3 роки тому +253

    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 😭

    • @nagaarjun619
      @nagaarjun619 3 роки тому +21

      Poor people die daily nobody Care's

    • @bakedbash
      @bakedbash 3 роки тому +3

      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.

    • @Unknownguy060
      @Unknownguy060 3 роки тому +3

      Poor people suffer like hell in this heaven life......

    • @sanidulislam1769
      @sanidulislam1769 3 роки тому +1

      You are absolutely right bro

    • @sanidulislam1769
      @sanidulislam1769 3 роки тому +1

      I live in village of Assam,my two nephews have the same disease but nobody help us

  • @myselfnajas1081
    @myselfnajas1081 3 роки тому +114

    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 💯❣️..

    • @debendubarman5253
      @debendubarman5253 3 роки тому +5

      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

    • @myselfnajas1081
      @myselfnajas1081 3 роки тому +4

      @Ameen Sha C athine njan theriyalla parange 🤣📌..

    • @Ambi999
      @Ambi999 3 роки тому +12

      @@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 +_+

    • @debendubarman5253
      @debendubarman5253 3 роки тому +1

      @@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

    • @Ambi999
      @Ambi999 3 роки тому +9

      @@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 +_+

  • @pynkhrawmarwein3109
    @pynkhrawmarwein3109 3 роки тому +322

    Basically this means that there's no chance for the under privilege.

    • @dibya8319
      @dibya8319 3 роки тому +16

      Be rich

    • @JayPatel-ll3bd
      @JayPatel-ll3bd 3 роки тому +8

      This are the people who says after money will not give you happiness

    • @LaxmikantKachhap
      @LaxmikantKachhap 3 роки тому +3

      Your statement is flawed. If everyone becomes privileged, will there be a reason to define the word "privilege"

    • @mohammedbaigalt5494
      @mohammedbaigalt5494 3 роки тому +3

      @@LaxmikantKachhap Sahi hain sab gareeb agar ameer hi gae toh ye babu ke ghar pe jhadu kaun lagayega ?

    • @LaxmikantKachhap
      @LaxmikantKachhap 3 роки тому

      @@mohammedbaigalt5494 Bilkul sai

  • @yashdwivedi8579
    @yashdwivedi8579 3 роки тому +92

    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.

    • @swayam584
      @swayam584 3 роки тому +6

      God bless you and ur family 👪🙏 ❤

    • @MemesthanYoutube
      @MemesthanYoutube 3 роки тому +3

      gov. hospital

    • @forrestgump5711
      @forrestgump5711 3 роки тому +2

      Hope you're able to raise it.

    • @gamni3592
      @gamni3592 3 роки тому +3

      Tweet and send message through insta to sonu sood

    • @yashdwivedi8579
      @yashdwivedi8579 3 роки тому +16

      @J-TRAX 🙂 non alcoholic cirrhosis hai bhai.

  • @14vkumar
    @14vkumar 3 роки тому +336

    Earlier:- survival of the fittest
    Now:- survival of the richest 😔

    • @hydrazene367
      @hydrazene367 3 роки тому +29

      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🙃

    • @aithi2694
      @aithi2694 3 роки тому +4

      @@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
      @aithi2694 3 роки тому +5

      I think its not survival of richest, but survival of educated. And uneducated villager won't even know to how to ask for help.

    • @rohitgogoi2712
      @rohitgogoi2712 3 роки тому

      Well said

    • @volteprime1748
      @volteprime1748 3 роки тому +7

      @@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.

  • @reshmaaaaaassss4789
    @reshmaaaaaassss4789 3 роки тому +206

    Yes...We keralalites collected today this huge amount for one of our kids....May God help him...

    • @noufalfazal666
      @noufalfazal666 3 роки тому +22

      Malayali poli allee😁 lets spread humanity.

    • @salihnh3498
      @salihnh3498 3 роки тому +1

      Athe

    • @debendubarman5253
      @debendubarman5253 3 роки тому +2

      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

    • @salihnh3498
      @salihnh3498 3 роки тому +19

      @@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 !?

    • @debendubarman5253
      @debendubarman5253 3 роки тому +4

      @@salihnh3498Isn't kerala 's system is strongest 🙃

  • @__xoxo__
    @__xoxo__ 3 роки тому +44

    In Kerala we raised 18CR in just hai days. Hope this kid also get cured

    • @pranayr9284
      @pranayr9284 3 роки тому +1

      I believe the kid passed away even before all the medical process began.

    • @pain00077
      @pain00077 5 місяців тому

      ​@@pranayr9284where the money gone...agar polio ka injection hi lagana tha to 😂😂

  • @parag263
    @parag263 3 роки тому +147

    Gone are the days, now Wealth is Health

    • @rosykhan8639
      @rosykhan8639 3 роки тому +1

      😎 👁️ correct

    • @Sujeesh_Bhosri
      @Sujeesh_Bhosri 3 роки тому +12

      Stay away from refined oils and packaged food

    • @rosykhan8639
      @rosykhan8639 3 роки тому

      @@Sujeesh_Bhosri true❤️👍👁️

    • @kartikeyporwal3539
      @kartikeyporwal3539 3 роки тому

      @@Sujeesh_Bhosri what do you recommend to cook food with? Mustard oil?

    • @manishsen8432
      @manishsen8432 3 роки тому +20

      @@kartikeyporwal3539Castrol 10w30 Engine Oil

  • @shabbirmerchant7678
    @shabbirmerchant7678 3 роки тому +410

    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.

    • @kaushik1604
      @kaushik1604 3 роки тому +68

      Free market big business economic philosophy which have brought us to this absurd stage. Late capitalism is interesting

    • @KMon1111IND
      @KMon1111IND 3 роки тому +50

      Wait till from rail to hospitals everything becomes private like in the USA.

    • @sadas8154
      @sadas8154 3 роки тому +54

      Simply answer "Capitalism". I decide the price, and you decide whether you have money or not.

    • @stillanonymous.8770
      @stillanonymous.8770 3 роки тому +13

      Effect of capitalism

    • @muddassir518
      @muddassir518 3 роки тому +3

      Exactly

  • @quixoticfiend9274
    @quixoticfiend9274 3 роки тому +231

    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?

    • @shrvani
      @shrvani 3 роки тому +21

      Why are you blaming politicians? Even with best healthcare or government, the drug will still cost the same anywhere in the world.

    • @bhuvaneshkrishna8474
      @bhuvaneshkrishna8474 3 роки тому +13

      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

    • @quixoticfiend9274
      @quixoticfiend9274 3 роки тому +26

      @@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.

    • @ananya1666
      @ananya1666 3 роки тому +7

      Very valid points

    • @ramkrishan_sahu
      @ramkrishan_sahu 3 роки тому

      How is it possible in Europe and Canada...

  • @srilatha99
    @srilatha99 3 роки тому +70

    Please think about rest of the patients and their survival.

  • @smish2931
    @smish2931 3 роки тому +31

    So good to see humanity winning like this in the form of a kid happily running and playing around❤️

  • @sanaramohajir
    @sanaramohajir 3 роки тому +126

    May the Almighty keep the child healthy and normal . God bless him and his parents.

    • @saiyedf
      @saiyedf 3 роки тому +1

      Aamin

    • @mylizardprotectsmefrombugs2568
      @mylizardprotectsmefrombugs2568 3 роки тому +1

      His parents are already blessed. They are well educated..Better keep your wishes for the needed ones

    • @AchuCSE
      @AchuCSE 3 роки тому

      Thank Science.

  • @ratnamani8228
    @ratnamani8228 3 роки тому +54

    The Drug Costs the Same Amount as
    the Land Scam by Temple Trust in
    Ayodhya. 😁👍

    • @flowersflower110
      @flowersflower110 3 роки тому +2

      is it a scam first place?

    • @austin426512
      @austin426512 3 роки тому +4

      But much less than 2lakh crore scam by Italian mafia family of congress

    • @maneomkar18
      @maneomkar18 3 роки тому +11

      @@austin426512 BJP IT cell भडवा spotted

    • @SatishKumar-uz7bz
      @SatishKumar-uz7bz 3 роки тому +3

      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

    • @SatishKumar-uz7bz
      @SatishKumar-uz7bz 3 роки тому

      @G Modi jee bohat jald ghaddaar congress, AAP, TMC. AIMM etc parties ko desh se mukt kare ge. Modi he to mumkin he

  • @nidhinkumarg2894
    @nidhinkumarg2894 3 роки тому +9

    People of Kerala collect 18 cr in 7 days for the medicine.for help 1 and half year child Muhammad

    • @mssuskar
      @mssuskar 3 роки тому

      Good for him but I didn't get your point how it's related 😑

    • @beluga8427
      @beluga8427 3 роки тому +1

      @@mssuskar because that kid muhhamad also has the same spinal disease and he also need this 18cr medicine

    • @mssuskar
      @mssuskar 3 роки тому +1

      @@beluga8427 Oh ok he just posted half the story but anyway good to know that both got their normal life back 👍

  • @whitetiger9974
    @whitetiger9974 3 роки тому +7

    16 crore for one child while many children die due to lack of even 1 lakh rupees for treatment of their disease.

    • @Chaudhary_aadarsh....
      @Chaudhary_aadarsh.... 5 місяців тому

      Your child die from this disease😢😢 I am also suffering from this disease😢

  • @Roots108
    @Roots108 3 роки тому +30

    Because the drug 'dramatically transforms' the patient's life they priced it so high. Let that sink in.

    • @gargitake9620
      @gargitake9620 3 роки тому +1

      Capitalism !!!

    • @vedantsingh_
      @vedantsingh_ 3 роки тому +1

      @mohit kaushik Novartis ceo clearly said that it “dramatically transforms” they are only profiteering off it

    • @giornogiovanna4117
      @giornogiovanna4117 3 роки тому

      @@gargitake9620 if there was communism then this medicine wouldn’t even exist

  • @consciousliving8922
    @consciousliving8922 3 роки тому +65

    1:00 Why is the drug priced so high?
    Pharma Company: Because it dramatically transforms the quality of life.
    What an excuse!!

    • @Youtub60662592
      @Youtub60662592 3 роки тому +6

      Exactly it dsnt make any sense.. they r just doing plain business..

    • @akShhtrazz
      @akShhtrazz 3 роки тому +5

      Well that's how all the greedy pharma companies are. I'm not even surprised

    • @ananya1666
      @ananya1666 3 роки тому +17

      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

    • @ashwinnair9862
      @ashwinnair9862 3 роки тому +6

      @@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.

    • @consciousliving8922
      @consciousliving8922 3 роки тому +4

      ​@@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.

  • @dravikrish7323
    @dravikrish7323 3 роки тому +7

    Yesterday I have donated 4K one of the child who is suffering this disease. Baby is from Coimbatore her name is mithra.

  • @KMon1111IND
    @KMon1111IND 3 роки тому +68

    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.

    • @murtkand3141
      @murtkand3141 3 роки тому +1

      no thats nt how it is

    • @Akarsh-
      @Akarsh- 3 роки тому +2

      Lot of money is spent for R&D + rarity of this disease makes it 📈📈📈📈📈

    • @KMon1111IND
      @KMon1111IND 3 роки тому +1

      @@murtkand3141 Yes it is.

    • @KMon1111IND
      @KMon1111IND 3 роки тому +1

      @@Akarsh- They could have said the same thing instead of that crappy reason.

  • @khazikhadir1939
    @khazikhadir1939 3 роки тому +56

    Now this is great India
    Proudly Indian
    All those helping hands are real patriots

    • @indigobrain7450
      @indigobrain7450 3 роки тому +4

      😂😂😂

    • @altamashkhan100
      @altamashkhan100 3 роки тому +7

      @@indigobrain7450 ha tumhe to hasi aayegi modi bhakt

    • @beyondimagination1356
      @beyondimagination1356 3 роки тому +14

      Andh bhakt just help in building lifeless mandirs instead of helping the innocent lifes

    • @angeloj3139
      @angeloj3139 3 роки тому +6

      @@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.💓

    • @beyondimagination1356
      @beyondimagination1356 3 роки тому +1

      @@angeloj3139 👍👍

  • @twilightofthegods3797
    @twilightofthegods3797 3 роки тому +40

    A Life saving drug shouldn’t be 16 crores!!!!

    • @amarnathma4213
      @amarnathma4213 3 роки тому +1

      That's right

    • @bourbon8705
      @bourbon8705 3 роки тому +28

      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.

    • @Shome2049
      @Shome2049 3 роки тому +10

      @@bourbon8705 these idiots don't understand the word RARE. These drugs are super expensive because we rarely have the diseases.

    • @MehNameIsJeff
      @MehNameIsJeff 3 роки тому +4

      @@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.

  • @Shome2049
    @Shome2049 3 роки тому +112

    Imagine this guy becomes a genius when he grows up and changes the world.

    • @granny2677
      @granny2677 3 роки тому +39

      Or just go into the rat race of JEE and NEET

    • @max9inmybday
      @max9inmybday 3 роки тому +10

      Or worse, walks in the footsteps of sharjeel imam, umar khalid, the tukde tukde gang, etc. and the likes

    • @I-47-I
      @I-47-I 3 роки тому +1

      Nature Dosent make all of us equal..
      Some aren't meant to survive and pass on the thier genes

    • @Maverick965
      @Maverick965 3 роки тому +10

      @@max9inmybday Or like you even, who know nothing except spewing hatred.

    • @max9inmybday
      @max9inmybday 3 роки тому +7

      @@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! 🤦‍♂️

  • @roshanantony64
    @roshanantony64 3 роки тому +16

    Healthcare shouldnt depend on my bank balance!

  • @gouthamkrishna5034
    @gouthamkrishna5034 3 роки тому +5

    In Kerala 2kids in a poor family has this disease

  • @doctorsubhan915
    @doctorsubhan915 3 роки тому +43

    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

    • @abcabc-ee4bh
      @abcabc-ee4bh 3 роки тому

      Gene therapy is permanent illaj..
      I would like to make your son the best in blood..

    • @infamousviper1746
      @infamousviper1746 3 роки тому

      @J-TRAX 🙂 not necessarily , it can also be done after birth

    • @infamousviper1746
      @infamousviper1746 3 роки тому

      @J-TRAX 🙂 you can put it into almost all cell using retrovirus as vector , even in this case they did same.

    • @nids008
      @nids008 3 роки тому

      @@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.

  • @sreenivasagupta1225
    @sreenivasagupta1225 3 роки тому +6

    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.

  • @alfredmaben2007
    @alfredmaben2007 3 роки тому +155

    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 !

    • @kubrab2617
      @kubrab2617 3 роки тому +2

      Exactly I was going to comment

    • @inderpalsingh422
      @inderpalsingh422 3 роки тому +37

      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

    • @vishal.choudhury
      @vishal.choudhury 3 роки тому +4

      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

    • @26herbs47
      @26herbs47 3 роки тому +31

      I cannot support this statement. Nobody in this world is here for charity. Not even the roadside vegetable seller not even Ambani.

    • @tejua7767
      @tejua7767 3 роки тому +2

      Reaserch require lot of trial and errors , maintenance and so on

  • @venkatakrishna2036
    @venkatakrishna2036 3 роки тому +3

    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

  • @altamashkhan100
    @altamashkhan100 3 роки тому +15

    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.

    • @giornogiovanna4117
      @giornogiovanna4117 3 роки тому

      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

  • @mdzaid5925
    @mdzaid5925 3 роки тому +14

    There is no reason to put taxes on such drugs

  • @backtovillage4913
    @backtovillage4913 3 роки тому +18

    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.

  • @AbhiNair_9
    @AbhiNair_9 3 роки тому +3

    So happy to have donated for him, wishing him a great life ahead♥️

  • @adithp1051
    @adithp1051 3 роки тому +16

    It’s just like pasting a DLL file which is missing from the setup folder (Pirated setup)

  • @angelamomin522
    @angelamomin522 3 роки тому +8

    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.

    • @abhayagarwal5097
      @abhayagarwal5097 3 роки тому +1

      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.

    • @MemesthanYoutube
      @MemesthanYoutube 3 роки тому

      @@abhayagarwal5097 gov is now spending 5.5% of budget on education

  • @gokumallaaruna985
    @gokumallaaruna985 3 роки тому +11

    Hope he is doing well
    May god bless ur family those who have donated

  • @saikatmandal2236
    @saikatmandal2236 3 роки тому +26

    I am happy to be one of those 65000 donors😀😀

  • @YashRaj-qu7gu
    @YashRaj-qu7gu 3 роки тому +24

    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.

  • @beautifulvideod825
    @beautifulvideod825 3 роки тому +1

    Such an emotional moment, God bless all those who have contributed in any forms - be it monitory or through healing prayers

  • @fornews9627
    @fornews9627 3 роки тому +19

    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 ?

    • @spartangod6096
      @spartangod6096 3 роки тому +1

      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

    • @fornews9627
      @fornews9627 3 роки тому

      @@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.

    • @spartangod6096
      @spartangod6096 3 роки тому

      @@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

  • @TapanThakur1964
    @TapanThakur1964 3 роки тому +10

    Money is something that robs the poor from the gift of life.

    • @allforone8311
      @allforone8311 3 роки тому

      Was just about to type that.

    • @utkarshsingh3030
      @utkarshsingh3030 3 роки тому

      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 😀

  • @namansinghbali
    @namansinghbali 3 роки тому +26

    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.

  • @subhashraskar810
    @subhashraskar810 3 роки тому +2

    UK just negotiated low price of 10 cr per treatment with company and giving free to their public.

    • @nixenvines007
      @nixenvines007 3 роки тому

      Wrong, price of this medecine in UK is £1.79 million equal to 14 crore

  • @sanjibnandi8607
    @sanjibnandi8607 3 роки тому +5

    May God bless him 🙏🙏

  • @shreyasupadhye3102
    @shreyasupadhye3102 3 роки тому +10

    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❤️

    • @Keniz99
      @Keniz99 3 роки тому

      It all related to publicity

  • @runwinter..0202
    @runwinter..0202 3 роки тому +9

    Plzz there us a family in kerala who us in need of it......medicine
    Can u plz help themmm.......

    • @mr.l2993
      @mr.l2993 3 роки тому +6

      We did it❤

  • @Bhakto_ke_Jijaji
    @Bhakto_ke_Jijaji 3 роки тому +6

    May god bless him.

  • @alienshumans9052
    @alienshumans9052 3 роки тому +2

    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

  • @ZenPB
    @ZenPB 3 роки тому +5

    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.)

    • @h3rwrl
      @h3rwrl 3 роки тому +1

      @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.

    • @Amin10XD
      @Amin10XD 3 роки тому

      @@h3rwrl oh gyan pel rahi ho

  • @SuvankarChakraborty2012
    @SuvankarChakraborty2012 3 роки тому +21

    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 !!

    • @DEEPANJANBISWAS
      @DEEPANJANBISWAS 3 роки тому +6

      In india this type of pricing is not present. This drug is only available from a USA company.

    • @anupam560
      @anupam560 3 роки тому +1

      A pondh paka bangali spotted 😂

  • @kartikeyaayar2049
    @kartikeyaayar2049 3 роки тому +2

    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...!!!

  • @aljox5566
    @aljox5566 3 роки тому +1

    BTW the research cost of this drug amounts to 2 billion dollar and took more than a few decades

  • @karanmutti
    @karanmutti 3 роки тому +18

    6 crore gst wah nirmla amma

    • @kubrab2617
      @kubrab2617 3 роки тому +2

      Onion ki tarha wo drug use nahi karti na isliye....

  • @Focused76
    @Focused76 3 роки тому +4

    God keep him safe.

  • @shabonidas7923
    @shabonidas7923 3 роки тому +1

    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 🙏🙋

  • @whitetiger9974
    @whitetiger9974 3 роки тому +2

    16 crore bahut zyada hai.Government must take action.

  • @kj9308
    @kj9308 3 роки тому +19

    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....

    • @dikshant7549
      @dikshant7549 3 роки тому +7

      I think 16 crores could potentially save thousands of lives !!
      Why to save that one ?
      ( Logical explanation welcomed)

    • @anirbanraha8952
      @anirbanraha8952 3 роки тому +4

      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!

    • @dikshant7549
      @dikshant7549 3 роки тому +4

      @Dead_clasher i am not an idiot , think logically

    • @kj9308
      @kj9308 3 роки тому +3

      @@dikshant7549 logically u r ryt... Though emotionally it sounds incorrect but practically I agree

    • @kj9308
      @kj9308 3 роки тому +4

      @@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....

  • @leslinnnn
    @leslinnnn 3 роки тому +3

    This company CEO is tamil atleast for india he can give in less price , 16 crores is too much

  • @venthusefc4826
    @venthusefc4826 3 роки тому +2

    65000 goosebumps ❤️good hearts are still there

  • @anubhavdas9044
    @anubhavdas9044 3 роки тому +1

    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...

  • @vikashanumante404
    @vikashanumante404 3 роки тому +3

    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..

    • @notsochillyash499
      @notsochillyash499 3 роки тому

      They should reduce the fees to compensate the taxes made out of all needed equipment and medical aid

  • @aniljkattukaran2415
    @aniljkattukaran2415 3 роки тому +3

    So the gov needs 6cr on medicine too.........nice government system, god bless

  • @cosmic2096
    @cosmic2096 3 роки тому +2

    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 .

  • @rawstick4307
    @rawstick4307 3 роки тому +1

    May he have very happy life ahead
    Best wishes 💝

  • @altamashkhan100
    @altamashkhan100 3 роки тому +10

    I was one of them who donated in noble cause

  • @arun0921
    @arun0921 3 роки тому +18

    Life saving drugs such as this should be made generic

    • @jeevanandamramesh48
      @jeevanandamramesh48 3 роки тому

      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...

  • @intuitivecontrolsystem4436
    @intuitivecontrolsystem4436 2 роки тому

    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

  • @njan_ragavn1248
    @njan_ragavn1248 3 роки тому +2

    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.... 🖤

    • @mr.l2993
      @mr.l2993 3 роки тому

      I think its 18 cr

  • @aniketyadav7998
    @aniketyadav7998 3 роки тому +24

    This is the magic of allopathy. Can baba ramdev do this with anulom vilom?

    • @ishaankapil4982
      @ishaankapil4982 3 роки тому

      Abey yaar... tum log ek dusre ka ser phod do bss...

    • @aniketyadav7998
      @aniketyadav7998 3 роки тому +5

      @@ishaankapil4982 haan, ser phodne ke baad stiches and blood loss ke liye blood lagaana ho toh sab hospital mein hoga, yoga shivir mein nahi

    • @mohammedbaigalt5494
      @mohammedbaigalt5494 3 роки тому +5

      Babaji bolenge maa baap anilom vilom karte to bacche ko ye disease hi nahi aati 😅

    • @aniketyadav7998
      @aniketyadav7998 3 роки тому

      @Bantai Rapper koi ayurveda ko bura nahi bol raha..... But baba doctors ka mazaaq udaata hai

    • @bricknerdz2561
      @bricknerdz2561 3 роки тому +1

      @Bantai Rapper nityanandamshree 😂😂

  • @adarshom4255
    @adarshom4255 3 роки тому +12

    These parents and child must dedicate their lives for the welfare of soceity.

    • @aakashvivek
      @aakashvivek 3 роки тому +3

      No.

    • @utkarshsingh3030
      @utkarshsingh3030 3 роки тому +6

      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

    • @aparnadinesh2462
      @aparnadinesh2462 3 роки тому

      Thats upto them...

    • @mr.l2993
      @mr.l2993 3 роки тому

      He will live his life....

    • @bibinbabu5262
      @bibinbabu5262 3 роки тому

      No, it's our duty to help them and everyone in need.

  • @Ram-uq8wi
    @Ram-uq8wi 3 роки тому

    God bless all those who have donated n saved this boy's life.

  • @vikhyatyadav8721
    @vikhyatyadav8721 3 роки тому

    thank you 65k peoples

  • @kezakietuonaga8199
    @kezakietuonaga8199 3 роки тому +3

    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.

    • @saksham_1002
      @saksham_1002 3 роки тому

      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

  • @shahidraza7448
    @shahidraza7448 3 роки тому +6

    The respective state should take the responsibility to treat such patients.For state it's not such a big issue.

  • @preenasamuel
    @preenasamuel 3 роки тому

    Praying for you... son.. God bless you

  • @Yoyo-ck9pm
    @Yoyo-ck9pm 3 роки тому

    Cute child ❤️❤️ God blessings always with him,❤️❤️

  • @ajazvibezz6637
    @ajazvibezz6637 3 роки тому +3

    Now the same disease is for a child in kerala.... Plz pray for him

    • @mayankraghuvansh9596
      @mayankraghuvansh9596 3 роки тому

      can you share the link lets help the boy

    • @ajazvibezz6637
      @ajazvibezz6637 3 роки тому

      @@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

    • @RajeshKumar-uq7yz
      @RajeshKumar-uq7yz 3 роки тому +1

      There is one child in TN too

    • @ajazvibezz6637
      @ajazvibezz6637 3 роки тому

      @@RajeshKumar-uq7yz OmG....... May that child recover soon

    • @ajazvibezz6637
      @ajazvibezz6637 3 роки тому

      @@RajeshKumar-uq7yz bro whether the 16 cr is arranged?

  • @taski1231
    @taski1231 3 роки тому +3

    Allah bless the child and the supporters who contributed in his health

  • @GetSmarterEveryday1
    @GetSmarterEveryday1 Рік тому +1

    Kaun kaun Sanjay sir ke video se yaha aya hai.

  •  3 роки тому +1

    Waste of 16 crores. A lot more children could be saved with such a big amount

  • @phab2protango374
    @phab2protango374 3 роки тому +5

    Its expensive because someone's got to make money

  • @ferozak37
    @ferozak37 3 роки тому +4

    Where is our feku chacha?😂😂😂

  • @8lpha
    @8lpha 3 роки тому

    Thank u people who helped him🥰🥰🥰.
    We pray that your son will get healed soon and can live a healthy life...👍👍👍

  • @shaistaanjum9149
    @shaistaanjum9149 3 роки тому +2

    Alhamdulillah for everything 🙏🏻

  • @pravintiger
    @pravintiger 3 роки тому +3

    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❤❤❤

  • @mistermind8170
    @mistermind8170 3 роки тому +5

    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.

    • @ratnamani8228
      @ratnamani8228 3 роки тому +7

      Prices in US are Unregulated.
      It Costs even more in US even
      with Low Taxes. 🤷‍♀️

    • @mistermind8170
      @mistermind8170 3 роки тому

      @@ratnamani8228 I checked even if one goes to us and gets the injection it will be cheaper

    • @livelifeeat5526
      @livelifeeat5526 3 роки тому

      I guess the boy can't travel so long in this condition!

    • @ratnamani8228
      @ratnamani8228 3 роки тому +2

      @@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

    • @mistermind8170
      @mistermind8170 3 роки тому +1

      @@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

  • @rahulsingh-nk4vj
    @rahulsingh-nk4vj 3 роки тому +1

    God bless

  • @subarna89
    @subarna89 3 роки тому +2

    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 !

    • @ZenPB
      @ZenPB 3 роки тому +3

      Sorry to hear that. Fundraising in India depends on how strong your PR game is. Sad but true.... ☹️

    • @malldeepak85
      @malldeepak85 3 роки тому

      The family has taken the help from Impactguru crowdfunding platform. They have been successful in raising this huge amount for other kids as well.

  • @OmSinghJi
    @OmSinghJi 3 роки тому +3

    Why wasn't he left to die? Come on he's just another kid. Many kids die under mysterious circumstances. 16 cr for him, come on...

  • @arshilzia3842
    @arshilzia3842 3 роки тому +4

    If he's not going to be fine then what's the use of spending crores ? Could have helped other kids

  • @pratiknazareth3217
    @pratiknazareth3217 5 місяців тому

    Proud to be one of thr makers of Zolgensma

  • @memida2981
    @memida2981 3 роки тому

    16 crores can change so many life...

  • @amitkumarbiswas9823
    @amitkumarbiswas9823 3 роки тому +3

    I still don’t get why this is so expensive

  • @Hasimazak188
    @Hasimazak188 3 роки тому +1

    Atleast mention place

  • @ajay11001u
    @ajay11001u 3 роки тому

    Wishing him and every individual for a healthy life.. 🙏🏼🙏🏼🙏🏼

  • @jaijawanagrifarm2416
    @jaijawanagrifarm2416 3 роки тому +2

    May God bless you....