Lok Sabha Question No. 85 (UNSTARRED), answered on 2021-11-29
Subject: Waiver of GST
Ministry: FINANCE
Asked by: A.K.P. Chinraj

## 85. SHRI AKP CHINRAJ:

Will the Minister  of FINANCE be pleased to stale:

- (a) whether it is a fact that based on a VIP reference, the waiver of Goods and Services Tax (GST) for Zolgensma was approved for a child from Tamil Nadu; drug
- (b) if the details thereof along with the VIP reference on which it was approved; and SO.
- (c) the date on which and by whom the first VIP reference was received in this regard?

## ANSWER MINISTER OF STATE FOR FINANCE (SHRI PANKAJ CHAUDHARY)

- a. Several   references were received for the Goods and Services Tax (IGST) at the time of import of Zolgensma for a child by the name of Mithra from Tamil Nadu. In addition to the references; the request was also received from the father of the baby K S Mithra, Shri Satheesh Kumar vide email dated 08.07.2021\_ The case was  examined on merits and waiver was granted vide Ad hoc Exemption Order no 09/2021 dated ]4th July 2021. drug Baby
- b. A copy of the Ad hoc Exemption Order is enclosed along with the related references and request received vide mail dated 08.07.2021 from the father of the baby K S Mithra, for the subject case.
3. C The First reference in this regard was received in this Ministry on 6"h July 2021, through an email communication from the Department of Commerce.

Enclosures: As above

## GOVERNMENT OF INDIA MINISTRY OF FINANCE DEPARTMENT OF REVENUE

## LOK SABHA UNSTARRED QUESTION NO. 85 TO BE ANSWERED ON MONDAY THE November; 2021 AGRAHAYANA 8, 1943 29TH

## Waiver of GST

## F No. 461/11/2021-Cus V

## Ad-hoc Exemption Order no. 9 of 2021 Issued under section 25(2) of the Customs Act; 1962

## Government of India Ministry of Finance Department of Revenue

The Chief Commissioner of Customs; Bengaluru Zone Bengaluru To.

Sir,

Subject: Request for Special Exemption from payment of Customs Duty under Section 25 (2) of Customs Act, 1962 on import of Zolgensma reg:

The undersigned is directed t0 refer to a request received from Mr. Satheesh Kumar; father of baby KS. Mithrra; seeking exemption from payment of in terms of Section 25 (2) of Customs Act; 1962,for import of Zolgensma; a for gene replacement therapy. duty drug

- 2 He has informed that:
- his daughter; KS. Mithrra, has been diagnosed with Spinal Muscular Atrophy; type 1, a severe, rare, early-onset genetic disorder that affects a child's nervous system and eventually kills the baby as the condition progresses:
- iii) have obtained approval from DGCI to import this life saving medicine for personal use. they
- (ii) have raised money (INR [6 crores) to cover costs for a revolutionary gene replacement therapy. Zolgensma, priced at USD $2.125 million, to save his life, through crowd funding: they
- (iv) the infant 5 weight; 55 ml of the would be required for the treatment: drug drug
- The is expected to be imported as 1 package with 55 ml doses of medicine. drug
- 2.1 have requested for waiving off the customs duties and GST on the import of this lifesaving Zolgensma. They drug
- 3 . exercise of the powers conferred by sub-section (2) of Section 25 of the Customs Act, 1962 (52 of' 1962). satisfied that it is necessary in the public interest s0 to hereby exempts 55 ml of Zolgensma, from the whole of the Integrated Tax leviable thereon under sub-section (7) of section 3 of the Customs Tariff Act; 1975 , subject to the condition that the imported goods will be used for the treatment of Baby K.S. Mithrra and will not be put to other use. The said is already exempt from payment of BCD under Sl: No. 607 of Notification 50/2017- Customs dated 30th June, 2017, subject to conditions therein. being do, drug

Room no. 227A, North Block; New Delhi 5 110001 Dated the ]4th July, 2021

## F, No. 461/11/2021-Cus V Ad-hoc Exemption Order no. 9 0f 2021 Issued under section 25(2) of the Customs Act; 1962

- An undertaking that the covered by this Order will be used solely for the treatment of Baby KS: Mithrra and shall not be to any other use shall be submitted by the applicant to the jurisdictional Commissioner of Customs of the port of import for claiming benefit of exemption under this Order, goods put
- 5 infringement of conditions of this Order should be brought to the notice of the Commissioner of Customs of the port 0f import for taking further necessary action such as realization of Customs on the subject goods, action for such violations, etc. Any penal duly
- 6 This order is valid for imports made up to 13.10.2021

## to: Copy

Yours faithfully,

Under Secretary

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- K Satheeshkumar 5/68-23, Thirukumaran Street, Gandhinagar, Komarapalayam. Namakkal, Tamil Nadu- 638183 Mr;
- Principal Director (Customs) . Central Receipt Audit Office of the Comptroller & Auditor General, 10, Bahadur Shah Zafar New Delhi-I10 002 Wing; Marg:
- Guard File:

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. :

(Bullo Mamu) Under Secretary

## AKP CHINRAJ, B.Sc.

(LoK SABHA) Namakkal Constituercy

MEMBER

- Housing aad Urban Attals

To

Hon"ble Shri Piyush Goyal Ji Minister for Commerce and New-Delhi Industry

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21.06.2021

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Sub- Relaxation Import GST for ZOLGENSIA Hon'ble drug Sir;

Vanakkam; It was   brought to my that a child fom my constituency suffering  from demand Zolgensia which cost around 16 crore which is exclusive of the patient; L life of child notice, of drug

Thanking you Yours

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aud Urbaa Aflairs Housing

The relevant detaits attached herewith

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Mrs Vanathi Srinivasan Tamilnadu Maliile Morcha Bhanaiya Janata Party

Shri: Narendra Modi;

Respected rg

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Mediciae and request Saving

Thanking you

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Regarding- One time Waiver of GST and Import Duty for ZOLGESMA year old baby KS MITHRRA medicine for a 2

'

Jul 12, 2021 06.54 PM attachments Mon, 05

From : Kanimozhi Karunanidhi <kanimozhi@sansad.nic in>

Subject

To : fmo <fmo@nic.in> appointment fm <appointment; in> fm@gov.I

To,

Ms. Nirmala Sitharaman Hon'ble Minister for Finance, Government of India, New Delhi

RS in Respected Ma

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This is to . request you for a one time waiver of import and GST for medicine ZOLGENSMA which is to be used for treating the K.SMithrra Dlo Mr: K a two year old baby Satheesh Kumar: The baby has been suffering from Spinal Muscular Atrophy(SMA); a genetic disorder  since birth and her   condition is detericrating by The parents managed to raise 16 crore crowd to the medicine ZOLGENSMA rupees costs an additional 6 and the import duty crore rupees. In view of the above circumstances and medical condition of the the this request you to waive the import duty and GST for medicine to enable the baby to take the treatment immediately: reports and the identity proofs of the The medical are attached herewith. duty day day: have funding buy baby; baby

L Bincerely, Kanimozhi Karunanidhi

Attachments:

1. Medical Certificates from Bangalore Baptist Hospital

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Regarding- One time waiver of GST and Import for ZOLGESMA medicine for a 2 year old baby KS MITHRRA Duty

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## A GANESHAMURTHI

ERODE

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- Standing Committee on Agricuilure
- Consultative Committee on Electrohics and Information Technology

Thirumathi  Nirmala Sitharaman Avl;

Delhi 110 001

Tel; 0+24-2240099 2256713 Mobile 09442516162

12.07.2021

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Vanakkam.

Subject; Waiver of  Import Duty & GST to import ZOGENSMA' medicine am duty bound to forward an appeal received from Shri K Satheeshkumar; father of Baby KS\_Mithrra aged 23 months\_only; who is unfortunately affected by SPINAL MUSCULAR ATROPY decease since birth.

This poor family lives in my constituency namely Komarapalayam of Namakkal District and have approached me for help. On hearing the apathy of this case have personally visited them and offered to help them in mitigating their financial problems connected to this issue. they

The Doctors attending on her have finally confirmed that the medicine name as 'ZOGENSMA' needs to be imported from USA and Shri Satheeshkumar is putting in his best efforts to secure the amount required. have come forward to help this noble cause. Many

The import duty for this stands at 23% and the GST on its is 12%. Thus the duty Giuies The unfo::unate fatner Oi the patient is not Fwealthy enough to meet this am convinced of his   liability. Therefore, by forwarding his   application which is enclosed strongly recommend that Shri Satheeshkumar may kindly be permitted to import this medicine without import duty and GST payable to our nation.

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Chlic)

Incidentally, also understand that a similar appeal   from a patient Hyderabad has   been   sympathetically considered  by your good office. highly Kappreciate the fine gesture

Therefore, | request you to consider the application of Shri Satheeshkumar with utmost sympathy and permit them waiver of import and GST on the medicine to be imported to cure the sickness of Baby K 2 duty

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Thirumathi Nirmala Sitharaman Hon'ble Minister of Finance, Government of India, New Delhi.

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(Lok Sabna} Dharmapuri Constituency Tamii Nadu

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Govt: of India, North Block New Dclhi To;

Dear Madam,

Vanakkam

Sub: Request for Waiver of Import & GST reg: Duty

writing the following for your kind attention and necessary action.

Baby KS: Mithra (2 yrs) Dlo K Sathecsh Kumar is 4 patient of Spinal Muscular Atropy (SMA) a genetic disorder since her birth: The child has difficulty in walking and delayed  presentation in the motor neurons. Doctors have explained about the impact of this disease, which will increase by and will lead t0 shut down of the organs of the child and become life threatening  Council of Doctors also advised the ZOLGENSMA which has to be imported {rom abroad:. The cost of the is Rs 16 crores and an import duty taxation of additional Rs 6 crore Mr Satheesh Kumar is a middle class person; who cannot afford the medical expenses: Rs 13.5 crores has been raised through crowd funding. with a shortage of Rs 2.5 crores. GST cost of Rs 6 crore (which amounts to 35% of the cost of the medicine) is additional burden t0 the parents; Jower day day drug drug

In this   regard, 1 request you waive the Import Duty and GST of the (ZOLGENSMA). which is essential for saving the life of the child. drug

Thanking you

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No.6 Kaulilya Chanakyapuri New Deini 110 021 Marg;

No.12/9-C, Winding Driver Chinnasamy Street; Dharmapuri-636701, Tamil Nadu Mob +91-94433 72349

Date: 13.07.2021

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TEJASVI SURYA

MEMBEk OF PARLIAMENT (LOK SABHA) BENGALURU SOUTH KARNATAKA

U No DEL /TS/01017

To,

## Smt. Nirmala Sitaraman

Hon ble Minister for Finance & Corporate Affairs Goverment of India, New Delhi - 110 001

Respected Ma'am;

SUB Request to waive import & GST Zolgensma Gene from Novartis for Mithra K $ duty Therapy Drug Baby

## MEMBER:

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Standing Commitfee Information Technology Joint Commitfee on Offices of Profit Joint Parliamentary Committee on Personal Data Protection Bill 2019 On

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13.07.2021 Bengaluru

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[am in receipt of a representation from Mr. Satheesh Kumar & Mrs: Dharshini, parents of Baby Mithra K $, who is 2 years old and is diagnosed with Spinal Muscular Atrophy (SMA) Type 2. She needs this life which costs around INR 16 Crores and the GST and import costs INR 6 Crores. Priya saving drug duty

The family, through crowdfunding has been able to collect INR 16 Crores for securing the from Novartis. However;the family is unable to source funds for the GST & import and have made multiple requests before the concerned authorities for waiver: Previously, Covernment of India had waived import & GST on the same for Baby Teera Kamat & Baby Ayaansh on humanitarian grounds: ddrug duty duty , drug

In view of the above; I urge YOu to consider this request positively and waive the GST & import on the said and instruct the authorities concerned to take necessary steps on humanitarian grounds duty drug

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Email

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Fwd: Urgent Waiver On Import duty and GST to purchase Zolgensma gene therapy drug from Novartis Tax

From : Harish Kumar

08, 02.32 PM attachments Thu, 02

Subject

Fwd: Urgent Tax waiver on Import and GST to purchase Zolgensma gene therapy from Novartis duty drug

To : Rajanish Meena <rajanish meena@govin>

From: satheeshk182@gmail.com

To: "Harish Kumar" <uscusb-cbec@gov.in> .

Subject: Urgent Tax waiver on Import duty and GST to purchase Zolgensma gene therapy from Novartis drug

Priya Dharshini and Satheesh Kumar; from Komarapalayam, Namakkal District; write to you as concerned parents of Mithra, our 2-years-old daughter diagnosed with Spinal Muscular Atrophy; Tvpe 2. Hers is a severe, rare; early-onset genetic disorder that affects a child"$ nervous system and eventually kills the baby as the condition progresses. We,

We are working with our doctor Dr: Ann Agnes Mathew from Baptist Hospital, Hebbal, Bangalore, and the pharma company Novartis Gene Therapies to import Zolgensma, a lifesaving gene replacement for Mithra: Our doctor has advised that based on her current weight, she is going to require 55 ml of the medicine, which needs to be imported from the United States of America We confirm that this medicine is to be given to Mithra and will be imported for personal use This is expected to come as 1 package with 10 vials of 5.5 ml doses of medicine each, therapy

The medicine will need to be imported before the end of July and we have started the with the pharma company to initiate the procurement process. paperwork

We have raised the funds for the medicine through crowdfunding: We now request the government and the customs office that on humanitarian grounds please accept our request to provide customs duty and tax exemptions on this medicine import The medicine, Zolgensma, is critical for Mithra'$ survival and this additional amount is not something we are able to afford,

Please do let us know the procedure to apply for tax exemption as Mithra has little very time:

## Please see enclosed below:

2. Original doctor'$ prescription
2. 1 Appeal to PMO highlighting our case and the dire condition of Mithra
3. 3 Link on Import duty tax exemption for Spinal Muscular Atrophy drug

- +91 75986 06767 /+91 95006 23402 (Father)
3. Vidhya +91 87544 57670 (Aunt)
2. Priya Dharshini +91 95002 43444 / +91 63790 76618 (Mother)

Thank you,

Priya Dharshini and Satheesh Kumar

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## Mithra\_Appeal to PMO for tax waiver jpeg 95 KB

## Mithra\_Prescription from the treating doctor-pdf u 386 KB

From :

satheeshk182@gmail.com

Jul 08, 2021 02.27 PM 02 attachments Thu,

Subject

Urgent Tax waiver on Import duty and GST to purchase Zolgensma gene therapy from Novartis drug

To : Harish Kumar <UScUsS-cbec@govin>

' `

Respected Sir/Madam,

Priva Dharshini and Satheesh Kumar; from Komarapalayam, Namakkal District, write concerned parents of Mithra, our 2-years-old to you as Type 2. Hers is a daughter diagnosed with Spinal Muscular Atrophy eventually kills the baby as the condition progresses. We,

We are working with our doctor Dr: Ann Agnes Mathew from Baptist and the pharma company Novartis Hospital, Hebbal, Bangalore, replacement therapy for Mithra. Therapies to import Zolgensma, a lifesaving gene Our doctor has advised that based on her current weight, she is going to require 55 ml of the medicine, which needs to be imported from the America: We confirm that this medicine is to be United States of use: This is given to Mithra and will be imported for personal expected to come as 1 package with 10 vials of 5.5 ml doses of medicine each: Gene

The medicine will need to be imported before the end of July and we have with the pharma company to initiate the started the paperwork procurement process.

We have raised the funds for the medicine through government and the crowdfunding: We now request the customs office that on humanitarian grounds please accept our request to provide customs and tax exemptions on this medicine import The medicine; critical for Mithra'$ survival and this additional Zolgensma, is amount is not something we are able to afford. duty

Please do let us know the procedure to apply for tax= exemption as Mithra has very little time;

Please see enclosed below:

2. Original doctor's prescription
2. 1.Appeal to PMO highlighting our case and the dire condition of Mithra
3. Link on Import duty tax exemption for Spinal Muscular Atrophy drug

<

You can contact us at the below-mentionea numbers at anytime

2. Priya Dharshini +91 95002 43444 / +91 63790 76618 (Mother)
1. Satheesh Kumar +91 75986 06767 /+91 95006 23402 (Father}
3. +91 87544 57670 (Aunt) Vidhya

Thank you,

Priya Dharshini and Satheesh Kumar

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Mithra\_Appeal to PMO for tax waiver-jpeg 95 KB

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Mithe\_Prescription from the treating doctor pdf 386 KB

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