She still didn't quite answer why this medicine is so expensive. We get that about one third of the cost is govt duties, and that the govt can waive on appeal. But why the extremely exorbitant price in the first place? 10 crores is more than an average researcher at the pharma companies makes in their lifetime, and obviously 1 case in 10k babies still makes it needed for 10k babies each year, so it's obviously has enough demand for mass production. It's probably just monopoly of some giant pharma corporation.
This is the sin of free Market policy! Everything innovated in US and they deciding this price.. if it's not affordable then this news itself shouldn't reach the people . Technology makes world a global village but economy keeps up the rich and poor discrimination growing
I'm not exactly sure..but I think this medicine is slightly radioactive. Anything radioactive requires expensive machinary to manufacture. Also this medicine has very short half-life so it cannot be mass produced. Also this disease is rare so only few doses will ever be made. Hence the entire cost of production has to be realised from these few doses.
It's actually a gene therapy. A type of virus is injected which then dies after it has delivered a part of the neuron which will continue to make the protein for lifetime. That particular protein are essential for muscle movement. The cost of making such a gene is super high making the drug that expensive.
Patients needing this medicine should receive help from the government. This imo falls under human right to live. Instead of blowing up money on crappy statues help the 70% population of this country that falls under low income group. Can't imagine the plight of the parents who have to see their child go through this
For this kind of emergency govt should avoid gst ....and they need to take the responsibility of the import of the medicine to the child and other necessary.....how they can took 6 crore without any humanity 😠
An average Indian family earning approximately 30,000 a month will take approx 160000000 ÷ 30000= 5333 months, which is approximately 5333÷12 years = 444 years. Just think about this for a minute and contemplate how expensive this medicine is.
There is a child from Kerala.. kasargod.. suffering from SMA. He needs 18 crore to survive, as we all know that a middle class family can't afford that much money. So please help the child
Similar in Namakkal, Tamil Nadu child mitra is suffering from the disorder.she needs help to get the medicine (₹.16 crore) kindly share and help🙏🙏🙏 Govt also should bring the life saving medicine out of Gst and other burden taxes...
Saving a life is much costlier in our developing country means in developed countries the cost will be in too much . Compare the salary of India and other countries . All can come to conclusion on costs
May Allah heal her, Ameen 😢😢 that injection alone costs 10 crores but due to extremely heavy import duty it gets additional 6 crores nd costs 16 crores 😡😡 they should atleast decrease the import duty on this injection which saves many lives nd not doing so only makes treatment nd more difficult nd impossible to afford 😡😡
Madam, I am Bangladeshi. I have been suffering from spinal muscular atrophy(SMA) for four long years. Now the condition is very bad. What is the treatment of this disease in India?
Amenerrasulû bi ma ûnzile ileyhi mir rabbihi vel mû’minun, kûllûn amene billahi ve melaiketihi ve kûtûbihi ve rusûlih, la nûferriku beyne ehadim mir rusûlih, ve kalu semi’na ve eta’na gufraneke rabbena ve ileykel masir (2/285) La yûkellifûllahu nefsen illa vûs’aha, leha ma kesebet ve aleyha mektesebet, rabbena la tûahizna in nesina ev ahta’na, rabbena ve la tahmil aleyna isran kema hameltehu alellezine min kâblinâ, rabbena ve la tuhammilna ma la takate lena bih, va’fû anna, vağfir lena, verhamna, ente mevlane fensurna alel kavmil kafirin (2/286)
This is medicine is not like other medicine which can produce in factories... It is new gene which was made for individuals in a lab after many clinical trials..
Y only dis pirticular medicine ????? Y not all d medicines ??? Y not everything.. food cloth house tv mobile car alcohol etc etc etc etc etc ????????????????????????????????????????????????????????????
@@bobuboi4643 perhaps u didnt get d sarcasm in my statement !!! What i meant is dat nothing comes free.. its exchange always.. b it nature or society or anything 4 dat matter.. I hope u acknowledge my point..
@@gudguy97 "affordable" is very relative term. No one can afford each n everything in d whole world.. everyone has certain limits whatsoever.... .. moreover u cant sell a diamond at d cost of a pebble.. can u ??? & As far as dat medicine is concerned.. its not mandatory.. (what if it wasnt dere at all). plus.. there is no guarantee of 100% revival .. or for any other treatment for dat matter.. even most sophisticated hospitals cant save 100% of their patients.. after certain point u hv to accept d ultimate truth of life... i.e. death. Money cant buy life.. dats god's prerogative & mercy
She would need this treatment whole life.....there is no cure for SMA , it's just a treatment that will help her survive ...... Plz donnot give her such a harrible life....it's a life of mercy and pain.... Not of joy and happiness.... Do not buy life, if God has decided to call her back , send her back.., she will not be happy with life purchased,,,,, life is god gift and not of a injection purchased ,,,,, she will need this injection for rest of her life.. .
Government should not apply any import duty on such medicine.... Because it's rare disease... These medicine should be import by government officials to avoid any black marketing
Only beautiful face will get help their are so many helpless babies are dying because of they can't afford treatment (in thousands) our indian medical budget is in lakhs of crores and they send valuable equipment and medicine to govt hospital but they can't treat they refer to private hospitals they are looting.. imagine instead of building 3600cr stuate they can build 36 international level hospitals with avg 100cr each hospital in every state we have best doctors. If I wrg please forgive 🙏
My question still remains.. Medicines are made to cure diseases and for the betterment of humanity...and why are they still this much expensive... I think money cure diseases...the culture..had been clear here money over medicine..
1) High cost of production (expensive raw materials and machinery). 2) Very short half-life (can't be mass produced and stored for later use). 3) very rare disease (few doses are ever produced and all the cost of production is divided among these few doses).
@@gudguy97 thats not a point... Ure statement means u dont know the medical emergency.. If u go throught that situation only u could understand. Such situations no one bargain. The corporates utilise that emergency.
Many many times my child is suffering with SMS type 1 I am from Bangladesh anybody help my child situation is so so critical every time we are hospital with her present time we are many treatment and we are loser. Can anybody help me please please my child situation is so critical.
God JESUS created the body and he knows all our painful suffering and our diseases Holy bible scripture says ..... "With JESUS CHRIST stripes we are healed". GOD JESUS HAS DIED FOR OUR SINS AND HE HAS RISEN FROM DEATH HE IS THE ONLY TRUE GOD. I will pray for those who are suffering with diseases .definefly God JESUS will heal you .......trust in God JESUS
Why couldn't they just give that shot freely? That's why Jesus said "they will be buying and selling before I return" I thought why is buying and selling is a sin? But now I understand why....
In kerala- kannur , a child is suffering the same situation. He need to get this medicine before November and the vaccine costs 18 Cr Rs
14 crore crossed😍
@@entertain3608 happy to hear that ❤️
I think by now, its fullfilled. I heard 3-4 hours back. 4 crores more required.
18 Cr crossed in 6 day's 😍
❤️
My 6 years old child also have SMA,
He can't walk🙏
Please pray for my child🙏
Thanks
☹️
take help of social media. Just like other people. May Allah bless you. Social media has a great power
Hope he or she gets better soon
hows your child now
@@JoeSimon101992 He Has Spinal Muscular Atrophy type 2 that's why he can't stand and walk also day by day his health is going down.
My daughter also suffering from SMA 1 she is 7 month old pray for her
Apki beti k test kaha hue the
.kis Dr n likhe the..aap.kha rehte ho
@@amitrana4382 dehradun uttrakhand
She still didn't quite answer why this medicine is so expensive. We get that about one third of the cost is govt duties, and that the govt can waive on appeal. But why the extremely exorbitant price in the first place?
10 crores is more than an average researcher at the pharma companies makes in their lifetime, and obviously 1 case in 10k babies still makes it needed for 10k babies each year, so it's obviously has enough demand for mass production. It's probably just monopoly of some giant pharma corporation.
This is the sin of free Market policy! Everything innovated in US and they deciding this price.. if it's not affordable then this news itself shouldn't reach the people . Technology makes world a global village but economy keeps up the rich and poor discrimination growing
I'm not exactly sure..but I think this medicine is slightly radioactive. Anything radioactive requires expensive machinary to manufacture.
Also this medicine has very short half-life so it cannot be mass produced. Also this disease is rare so only few doses will ever be made. Hence the entire cost of production has to be realised from these few doses.
It's actually a gene therapy. A type of virus is injected which then dies after it has delivered a part of the neuron which will continue to make the protein for lifetime. That particular protein are essential for muscle movement. The cost of making such a gene is super high making the drug that expensive.
@@sonalikashyap7446 thanks for explaining.
Patients needing this medicine should receive help from the government. This imo falls under human right to live. Instead of blowing up money on crappy statues help the 70% population of this country that falls under low income group. Can't imagine the plight of the parents who have to see their child go through this
In kerala the same disease affcted baby 2day we all kerala people gathered and donate 18 crore,,,,,, proud of all,, being a keralian,,,,
For this kind of emergency govt should avoid gst ....and they need to take the responsibility of the import of the medicine to the child and other necessary.....how they can took 6 crore without any humanity 😠
Today, vedika is no more 😟
18 crore has been raised or donated by the Keralites for child Muhammed within a day
We the keralian👍🏻💪roll model 2 other state,,,,
Within 7 days
7days
@@jithin1967 yes it was my mistake
@@shafeerk3273 🤗☺️
A genetic decease should be diagnosed when a foetus is five to six months in the uterus.
This same desease has come to a child in kerala he need 16cr need to help him
Gp number:8921223421
Not 16... 18 crore.... And today 18 crore fund crossed... ❤️
Yes bro we done it❤️
മലയാളി പൊളിയല്ലേ
@@dipinc6 ഇവിടത്തെ സർക്കാര് മാത്രം ഒന്നും ചെയ്തില്ല മലയാളി പോളിയാണ്
So cute bachchi😘
Luv u beta, live long and hv great success in life😘
An average Indian family earning approximately 30,000 a month will take approx 160000000 ÷ 30000= 5333 months, which is approximately 5333÷12 years = 444 years. Just think about this for a minute and contemplate how expensive this medicine is.
How is Teera now? Hope she is doing good by God's grace.
Why did God „blessed” her with this disease in first place
3:33 There was a very light but deep smile on my face
Today, vedika is no more 😟
Very good news .Confident that she will be cured .
There is a child from Kerala.. kasargod.. suffering from SMA. He needs 18 crore to survive, as we all know that a middle class family can't afford that much money. So please help the child
May almighty God heal her completely as nothing is impossible with Him
Similar in Namakkal, Tamil Nadu child mitra is suffering from the disorder.she needs help to get the medicine (₹.16 crore) kindly share and help🙏🙏🙏
Govt also should bring the life saving medicine out of Gst and other burden taxes...
if every indian give 1 rs then we can save these children
Get well soon.
thanks
I wish get well soon... Please oh God Help little child 😭😭😭😭
Jai Jagannath...
Help by donating dear.
Same situation in haldwani , uttarakhand a student of our school is suffering from this disease
God bless u baby
Kitni cute bacchi hai❤️🥺🥺
Saving a life is much costlier in our developing country means in developed countries the cost will be in too much . Compare the salary of India and other countries . All can come to conclusion on costs
May Allah heal her, Ameen 😢😢 that injection alone costs 10 crores but due to extremely heavy import duty it gets additional 6 crores nd costs 16 crores 😡😡 they should atleast decrease the import duty on this injection which saves many lives nd not doing so only makes treatment nd more difficult nd impossible to afford 😡😡
Modi ko hindu muslim karna hai, maggie bhi 5 rupees se 7 kardiya🤬🤬
Haan Bhai 😢 we all are indians first ❤ @@snehanayak9791
Madam, I am Bangladeshi. I have been suffering from spinal muscular atrophy(SMA) for four long years. Now the condition is very bad. What is the treatment of this disease in India?
Is there any update about baby health, I mean is she fine now? let me know please
@@averageguy8182 omg is it
Treatment is done or nt ?
@@swathithotla5728 sorry I mistaken kid there was same case in Kerela too the patient died yesterday
@@averageguy8182 ok
@@swathithotla5728 ko
Today, vedika is no more 😟
Same situation for a baby in kerala
I'm suffering from spino cerebellar ataxia... Is there any permanent treatment available for SCA
Kerala make history
Save her please , just peanut for many of these celebrities
Yes my dear.
Please pray for my child🙏
Amenerrasulû bi ma ûnzile ileyhi mir rabbihi vel mû’minun, kûllûn amene billahi ve melaiketihi ve kûtûbihi ve rusûlih, la nûferriku beyne ehadim mir rusûlih, ve kalu semi’na ve eta’na gufraneke rabbena ve ileykel masir (2/285)
La yûkellifûllahu nefsen illa vûs’aha, leha ma kesebet ve aleyha mektesebet, rabbena la tûahizna in nesina ev ahta’na, rabbena ve la tahmil aleyna isran kema hameltehu alellezine min kâblinâ, rabbena ve la tuhammilna ma la takate lena bih, va’fû anna, vağfir lena, verhamna, ente mevlane fensurna alel kavmil kafirin (2/286)
How is her health condition now?
If this kind of medicine production start at India may be medicine cost will be less than 60-80% of 16cr rs
This is medicine is not like other medicine which can produce in factories... It is new gene which was made for individuals in a lab after many clinical trials..
Who will give you patent...
With same symptoms, my real brother's daughter left us in her 7 month. We could have saved our daughter, if we knew about this medicine
why are they imposing this high import duty and gst 😓
This medicine should be available for free WorldWide..
Y only dis pirticular medicine ?????
Y not all d medicines ???
Y not everything.. food cloth house tv mobile car alcohol etc etc etc etc etc ????????????????????????????????????????????????????????????
@@SachinKumar-my6oq so you want a moneyless society? Trust me, it is no where near as good as it sounds.
@@bobuboi4643 perhaps u didnt get d sarcasm in my statement !!!
What i meant is dat nothing comes free.. its exchange always.. b it nature or society or anything 4 dat matter..
I hope u acknowledge my point..
@@SachinKumar-my6oq It shouldn't be free but it should be affordable
@@gudguy97 "affordable" is very relative term. No one can afford each n everything in d whole world.. everyone has certain limits whatsoever....
.. moreover u cant sell a diamond at d cost of a pebble.. can u ???
& As far as dat medicine is concerned.. its not mandatory.. (what if it wasnt dere at all). plus.. there is no guarantee of 100% revival .. or for any other treatment for dat matter.. even most sophisticated hospitals cant save 100% of their patients.. after certain point u hv to accept d ultimate truth of life... i.e. death.
Money cant buy life.. dats god's prerogative & mercy
This is incrable....only managable....
What's the update of this news
Finally she get that injection
@@gopalkhente1619 how is she now??
@@Therealweirdo she is recovering day by day showing small movement move one or two fingers it will take time
@@gopalkhente1619 thank u
She dead
She would need this treatment whole life.....there is no cure for SMA , it's just a treatment that will help her survive ...... Plz donnot give her such a harrible life....it's a life of mercy and pain.... Not of joy and happiness.... Do not buy life, if God has decided to call her back , send her back.., she will not be happy with life purchased,,,,, life is god gift and not of a injection purchased ,,,,, she will need this injection for rest of her life.. .
This new gene therapy requires one treatment only.
There's no f god and get your facts straight.
ALLAH YAR VE YARDIMCINIZ OLSUN
Government should not apply any import duty on such medicine.... Because it's rare disease... These medicine should be import by government officials to avoid any black marketing
16 CRORE IS A VERY BIG AMMOUNT AND I THINK FOR 1 CHILD'S LIFE IT IS WORTHLESS
Did she saved??
Same problem in Tamil Nadu Tanjore Bharathi pappa pls support Bharathi pappaaa
Only beautiful face will get help their are so many helpless babies are dying because of they can't afford treatment (in thousands) our indian medical budget is in lakhs of crores and they send valuable equipment and medicine to govt hospital but they can't treat they refer to private hospitals they are looting.. imagine instead of building 3600cr stuate they can build 36 international level hospitals with avg 100cr each hospital in every state we have best doctors. If I wrg please forgive 🙏
SHRI NARENDRA MODI THANK YOU ❤️
Do they get better in the sense they become fully functional?
My question still remains.. Medicines are made to cure diseases and for the betterment of humanity...and why are they still this much expensive... I think money cure diseases...the culture..had been clear here money over medicine..
Why suddenly so many babies having sma? Any root cause for this disease
It always existed but there was no cure, but now there is, so more awareness is being spread about it
It's a genetic disorder
Can any one give me number of this parents?
Today, vedika is no more 😟
Mem here is one more case with kanav Jangra in haryana he needs your help
Please help 🥺
What is the name of the female news anchor??
Why is this medicine so expensive why it's worth 10 crores can someone explain it in depth ?
And now another kid in Tamil Nadu Mithra is affected by sma
Please support Tanjore bharathi papa
My brother had this disease, unfortunately he didn't make it
your reason for why it is expensive is not making any sense
1) High cost of production (expensive raw materials and machinery).
2) Very short half-life (can't be mass produced and stored for later use).
3) very rare disease (few doses are ever produced and all the cost of production is divided among these few doses).
Shame on the Indian government
But still its worlds best gov for aand bhakt
Someone or rather a research team needs to be sent from W.H.O
Who can afford this treatment
govt is imposing gst on this too shame
you're willing to give 10 crores to a foreign company without hesitation so why not India?
@@gudguy97 thats not a point...
Ure statement means u dont know the medical emergency..
If u go throught that situation only u could understand. Such situations no one bargain. The corporates utilise that emergency.
Why the medicine is so expensive ?? Why you dont explain that ? Why just say because gst is expensive ???
I request plz donnot show me these miserable ads, milap........
16 crores rupees injection cost is a fraud.
Save bharathi
Many many times my child is suffering with SMS type 1 I am from Bangladesh anybody help my child situation is so so critical every time we are hospital with her present time we are many treatment and we are loser. Can anybody help me please please my child situation is so critical.
😢
I from Bangladesh, I have a sma baby of 7years old ,I need help
Om sai ram ....ple sai Appa. Aththa Baby ya kapathuga sai papa ple Sai Appa
😭😭😭😭😭😭😭😭😭😭 l pray to God for the little one and please save her🙏🙏😢😟 the God also save
Salman Khan aur Sonu Sood koh bolo jarur help karenge
Tum kya karega?..tali bachayega?
Right helthy girl soon plzz
🙏 🙏 🙏 🙏
👍💯
Why fucking bjp wave of taxes on this forever ??
USA accha paisa kamaraha hoga .
God JESUS created the body and he knows all our painful suffering and our diseases
Holy bible scripture says .....
"With JESUS CHRIST stripes we are healed".
GOD JESUS HAS DIED FOR OUR SINS AND
HE HAS RISEN FROM DEATH
HE IS THE ONLY TRUE GOD.
I will pray for those who are suffering with diseases .definefly God JESUS will heal you .......trust in God JESUS
Plz believe in Muslim and pray to God
What tf are you saying man/girl , if your daughter got sma what should you do , just pray 🙄 , you need to believe in science
@@Garv_Sachdeva0 bhaii kisne bhehas raha hai 7vi saddii ke logg hai yee😂😂
Shut your fookin mewth
Just pray thats enough...dont intrupt caste into any statements.. All Gods are equal.
Why couldn't they just give that shot freely?
That's why Jesus said "they will be buying and selling before I return"
I thought why is buying and selling is a sin? But now I understand why....
Yes☹️
Even if u dont sell.. but u have to buy/earn something in d first place itself !!!! Dis is natural fact.. which even nature cant bypass..