‘Institutionalise import exemptions for SMA kids’

Aarav is in a comatose state and currently undergoing treatment at AIIMS Delhi

Even as the parents of Baby Teera, who has been fighting Spinal Muscular Atrophy - Type 1 (SMA), and is currently on ventilator support at home, can finally see a glimmer of hope with the Ministry of Finance issuing an ad-hoc order on the child's behalf to grant an exemption of customs duty and GST waiver worth over R5 crore on the import of Zolgensma - a gene therapy medication used for the disease's treatment, at least five other kids in the country (all below 2 years of age) continue to suffer from the rare genetic disease without dim hope of recovery. In view of this, Teera's parents and CureSMA foundation have requested the central government to institutionalise these changes, in the larger interest of the other kids suffering from SMA across India.

Speaking to mid-day, Teera's father Mihir Kamat said, "On February 14, Teera will become six months old. The developments over the past couple of days have strengthened our faith in the government and humanity. On February 9, the Ministry of Finance, Department of Revenue, issued an ad-hoc exemption order on behalf of Teera and directed the Customs Department to grant a customs duty and GST waiver on the import of Zolgensma. At the very same time, the Health Commissionerate of Maharashtra issued two certificates, one for the recommendation of customs duty waiver, and the other for GST waiver, which further enforced our case at the state level. We are truly humbled and thankful for the speed at which all these papers were filed and approved."

Teera, who recently underwent a tracheostomy, is fed through tubes

Kamat added, "Teera has undergone a tracheostomy and is on home non-invasive mechanical ventilation support. She is fed through tubes and needs to be monitored round-the-clock. We have heard of medical miracles happening and now we are hopeful about saving Teera." Teera's parents have now appealed to the government to extend the help to other SMA kids as well and have requested to clear all bottlenecks to make the life-saving therapies easily available at affordable prices within India.

Six out of the 20 children suffering from SMA Type 1 across India are currently on various lifesaving support systems at their homes or hospitals across India. The kids who are hospitalised include Baby Aarav in AIIMS Delhi, Baby Janish in Karnataka, Baby Ruventhika in Chennai, Baby Shristi in Chhattisgarh and the fifth child is admitted in an ICU of a private hospital in Kerala.

Six-month-old Aarav, an SMA patient, along with his mother, who is suffering from leukaemia and currently undergoing chemotherapy

"We thank the government for granting exemptions in case of Teera but it's not enough. There should be a standard notification in public interest to exempt tax and duties on medicines meant for SMA treatment, lifesaving drugs like Zolgensma, Risdiplam and Spinraza. It's not possible for everyone to apply and approach for such exemption on a case-to-case basis. We humbly request the government to institutionalise these changes," said Alpana Sharma, Cofounder - Director Patient Advocacy, CureSMA Foundation India, a support group floated by the parents of children suffering from SMA.

"Today CureSMAIndia has one war but the whole battle will be one only when every person suffering from SMA will get the government's assistance to avail the medicines. We have also started an awareness campaign #EverySMAChildcounts," Alpana added.

‘Aarav is sinking'

Six-month-old Aarav from Delhi is currently on ventilator support and even his mother has been diagnosed with leukaemia and is undergoing chemotherapy. "Aarav was rushed to AIIMS on February 9 after her pulse stopped due to choking on milk. The doctors revived him through cardiopulmonary resuscitation (CPR). Though his pulse has been restored, he has been in a comatose state on lifesaving support for the last three days," said his uncle Ankur Kumar, 26, speaking to mid-day from Delhi.

Both Aarav's father Atul Kumar and uncle Ankur are jobless as they are preparing for a state-level competitive examination and they are dependent on their elderly parents for their daily expenses. "Aarav is sinking and the treating doctors have clearly said that he cannot be kept on ventilator support for a very long time, as it might damage internal muscles," added Ankur.

"We cannot afford any treatment and hence have started a page for Aarav on a crowd-funding platform and have also been in touch with CureSMA India foundation for guidance. So far we have managed to raise R1.71 lakh over the past four days," said Ankur.

Ankur has now appealed to the government of India to provide assistance in getting the imported therapies to India, so that lives of many SMA Type 1 children can be saved, as many cannot afford the costly line of treatment.

‘We thank the government for granting exemptions in case of Teera but it's not enough. There should be a standard notification in public interest to exempt tax and duties on medicines meant for SMA treatment, lifesaving drugs like Zolgensma, Risdiplam and Spinraza. We humbly request the government to institutionalise these changes' - Alpana Sharma, Cofounder - Director Patient Advocacy, CureSMA Foundation India.