Request to PM Modi To Arrange Free Life Saving Drug For Babies Diagnosed With SMA-Type1

Request to PM Modi To Arrange Free Life Saving Drug For Babies Diagnosed With SMA-Type1

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Aditya Dubey started this petition to Mr. Narendra Modi (Prime Minister of India) and

Great Nelson Mandela had once said that ‘There can be no keener revelation of a society’s soul than the way in which it treats it’s children’.

So how does it reflect on us as a society, when we allow young babies diagnosed with rare diseases to suffer and die without medical aid, merely because the treatment cost is prohibitive.

Most of us have never heard about Spinal Muscular Atrophy Type-1.

Spinal Muscular Atrophy is a rare and highly dangerous medical disease caused by loss of nerve cells, which carry electrical impulses from the brain to the muscles. The disease as it progresses makes it extremely difficult for the babies to carry out basic activities like sitting, swallowing and even breathing.

The most aggressive form- SMA Type-1 if not treated within one year of birth may cause permanent complications and may result in fatality before the second birthday.

No treatment for this disease is available in India, but now a wonder drug Zolgensma manufactured by Novartis in USA can act as a cure and save the life of the child.

You must be wondering then what’s the problem?

The only problem is the cost of the drug, which is a  Rs 16 Crores for the single dose treatment, making it almost impossible for most parents to arrange the drug for their child.

Imagine the agony of parents, who know that their child is fighting a losing battle against SMA and a cure is available, but they cannot afford to get it for their child.

India has hundreds of babies suffering from SMA Type-1 and though in rare cases some lucky parents have been able to raise funds through crowdfunding or are able to get the drug through a lottery system run by Novartis, in most cases the disease turns fatal.

Thousands of children have lost their lives due to SMA Type-1, while we the People and the State have looked away trying to ‘Ostrich’ ourselves from the pain of the child and parents.

Khyati is a 12 month old baby girl from Bengaluru who has been diagnosed with dreadful SMA Type-1. She is already losing muscle control and is forced to use a BIPAP to enable her to breathe. Now she has started developing feeding problems due to her inability to swallow and thus will have to be fed with a feeding tube.

Imagine she is just one year  old and has a bipap tube and a feeding tube attached to her body.

But Khyati is a Supergirl refusing to give up even in the face of extreme suffering and everyday continues to brave her problems and smile and play with her parents thus bringing light into their life, with her innocence.  But her smile is also a constant reminder to her parents of the extreme trauma that looms just around the corner, if the wonder drug is not arranged soon.

No parents deserve to go through this pain and suffering.

The Indian State being the ultimate parent of every child under the ‘Parens Patriae’ Policy, has to take up the responsibility to save Khyati and hundreds of other babies suffering from this disease.

New India rightly aspires to be an economic powerhouse and the next superpower of the planet, but how can all these dreams and aspirations become a reality if we can’t even afford to save our children.

In most developed countries the State takes responsibility of treatment and fund raising for children suffering from such diseases, through public funds, insurance and CSR.

We as a nation and people need to do the same.

We need to do whatever it takes to save our own, whatever be the cost, as each life is precious.

So Sign This Petition & Join Us in requesting the Hon’ble Prime Minister of India, Health Minister, Women & Child Welfare Minister & the NCPCR to enact a policy to arrange free life saving drug Zolgensma to all babies who are diagnosed with SMA Type-1.  

Before we conclude we seek one more favour -

Through crowdfunding  6.10 Crores have been raised so far for Khyati and the balance amount of Rs. 9.90 Crores has to be raised urgently.

So just Look at her photograph; Close your eyes for a moment; Feel her pain and if your heart feels that you owe a human duty to save her life then please make a contribution to save her life as government policy changes take time and she does not have it.

Aman Banka

Siddhant Sarang

Dr Aanchal Sharma

Anku Sharma

Raman NSVL

Anshu Bansal

Debasish Rath

 Aditya Dubey

0 have signed. Let’s get to 25,000!
At 25,000 signatures, this petition becomes one of the top signed on Change.org!