To
Jagat Prakash Nadda,
Ministry of Health and Family Welfare,

Anupriya Patel,
Union Minister of State for Ministry of Health and Family Welfare,

Prataprao Jadhav
Union Minister of State for Ministry of Health and Family Welfare,

Sub: – Enact a policy making SMA (Spinal Muscular Atrophy) Screening mandatory.

Respected Sir,

There have been several crowd funding advertisements popping up while browsing internet, requesting funds for people suffering with several life threatening diseases and out of them most of the cases would be of patients suffering with SMA (Spinal Muscular Atrophy).

SMA is a genetic condition that makes the muscles weaker and causes problems with movement. This leads to difficulty in normal movement, swallowing and in some cases affects breathing. SMA affects one in every 8000-10000 people around the world according to Genetics Home Reference. 

The cost of the medicine (Zolgensma) to treat SMA Type I patients under 2 years is approximately 16 crores + 6.5 crores (INR) duties and taxes. In July, 2022 (Notification No. 46/2021 and No. 02/2022) the Government has given full waiver of Basic Customs Duty (BCD) and Integrated Goods and Services Tax (IGST) to drugs imported (personal use only) for treatment of Spinal Muscular Atrophy (SMA) rare disease.

Though the Government waived of customs duty and IGST, even to afford or crowd fund 16 crores for a medicine is still a difficult task.

The other medicine Evrysdi (Risdiplam) costs about 22 lakhs to 72 lakhs per year depending age and weight of the person which should be administered throughout the patient’s life. Currently this medicine has no exemptions of GST and customs duty.

Another medicine Spinraza costs 5 crores plus taxes for the first year and 3 crores for every year throughout the life of the patient. Depending the type of SMA these medicines will be recommended to procure.

On 11 th August 2021 the Department of Health and Family Welfare launched a Digital Portal for Crowdfunding & Voluntary Donations for the treatment of patients of Rare Diseases in accordance with the mandate of the National Policy for Rare Diseases 2021.

The Digital Portal may be accessed through https://rarediseases.nhp.gov.in/

We requested the information on the number of patients nationwide suffering with SMA and the amount raised by the recently launched digital portal by crowdfunding for the treatment of the patients through RTI (MOHFW/R/E/22/02471/1 dated: 15/07/2022).

We received an RTI reply that A total of Rs. 1,58,747/- (during August 2021 - August 2022) has been received on the crowd funding portal for rare diseases as on date and no data is available on the number of patients suffering with SMA. 

On 25.03.2022,  Shri. Varun Gandhi, Member of Parliament (Lok Sabha) also questioned the same in Loksabha vide Question No. 3867, which was answered by Dr.Bharati Pravin Pawar, Union MoS for Health and Family Welfare as follows :

The total amount of donations that have been channeled to the portal is Rs.1,18,016 (Rupees One Lakh Eighteen Thousand Sixteen Only) till March 2022.

From the above details it is very clear that the Digital Portal for Crowdfunding & Voluntary Donations could not raise substantial amount of funds for the treatment of rare diseases.

As the cure of this disease is a very costly affair and if the treatment/medicine does not reach the patient in time there is considerable loss which cannot be reverted or even cause death.

Crowd funding is not a viable solution to get the medicine for patients suffering with SMA.

For this reason, the government should take measures to prevent this disease by creating awareness and making the SMA screening tests compulsory for everyone. These screening tests can be performed at different stages which are detailed below:

1) Pre and Post marital Screening: Screening (Carrier Analysis) should be made compulsory for all individuals who are planning to get married. This screening should be emphasized for individuals who have a family history of SMA.

SMA disease can be inherited only when two partners are carriers. Screening tests before marriage will help to identify people with carrier genes. If the screening tests have not been done before marriage the screening should be encouraged after marriage and before planning pregnancy. This is also done to identify carriers and take proper measures during pregnancy and after the birth of the baby.

2) Post Pregnancy Screening: Most of the times people are not obligated to take up pre and post marital screening. The government should make SMA screening tests mandatory during pregnancy for all the hospitals as it is now for HIV. In this case if the mother is tested a carrier for SMA, further the father should be screened to know the possibility of SMA for the child to be born. Only when both are tested carriers for SMA the foetus in the womb should be checked for SMA screening which is called as prenatal screening (Chronic Villus Sampling and Aminocentesis)

As SMA test for foetus involves taking a sample from the womb, there is a possibility of miscarriage. Therefore, we propose these screening before and during pregnancy to the parents rather than to the foetus.

3) New born Screening: This screening needs to be done soon after the birth of the baby. If the test detects SMA disease the early treatment can halt the progression of the disease and child would have chance to lead a normal life..

Sign my petition and together let us request Jagat Prakash Nadda, Union Minister for Health and Family Welfare to enact  a policy making SMA (Spinal Muscular Atrophy) Screening mandatory.