Mumbai: Parents plead with deputy CM for funds to save their child

Aakriti Singh who was diagnosed with SMA type 1 at four months when she was unable to sit or roll by herself; (center) Doctors examining Aakriti during one of her earlier visits to KEM Hospital; (right) With the help of the treatment, Aakriti is now able to sit by herself.

The parents of one-year-old Aakriti, diagnosed with Spinal Muscular Atrophy (SMA) type 1, have written an open letter to Maharashtra Deputy Chief Minister Devendra Fadnavis, requesting his intervention to provide financial assistance to continue her treatment. Aakriti was fortunate to have received a life-saving oral drug, which is otherwise exorbitantly priced through a promotional campaign undertaken by an MNC pharma company at KEM hospital, six months ago. But Aakriti will not be able to continue the life saving treatment, due to lack of funds under the National Policy for Rare Diseases.

Her parents have time till the end of this month to arrange for Rs 34 lakh for all the doses in 2024 or Rs 12 lakh for the doses in the next six months. The cost of the medication increases with the weight of the child. According to her parents, the drugs have improved her condition in the last six months as she is able to sit or roll by herself, which was not the case before. Her parents fear that if she is unable to continue to get the treatment she might be exposed to further complications and threat to life.

Aakriti's life at risk

"We are unaware what will happen to Aakriti once the effect of last dosage given on December 27 wanes. Aakriti's body will respond to the drug until January and without the drug therapy the improvement that we have been witnessing in last six months will deteriorate and her life will be at risk," said her mother Kirti Singh, a chartered accountant and a resident of CBD Belapur, Navi Mumbai. Singh had to give up her corporate job after Aakriti was diagnosed with SMA type 1 when she was merely four months old.

"It is said that the SMA type 1 children are supposed to take these life-saving drugs for the rest of their lives and any discontinuation might complicate their conditions and it will ultimately lead to breathing issues, and then these drugs won't be of any use, as the lung gets infected with pneumonia which could be fatal," said Singh.

"In case of Aakriti we were able to diagnose the ailment, before any complications could set in and fortunately her treatment started with the free doses at KEM Hospital. With every passing day, we are getting worried about the future course and cost of treatment, which is highly unaffordable to any common man," said Singh.

Treatment unaffordable

Aakriti turned one year old on November 3. When her treatment was started at KEM hospital, it gave the parents the ray of hope as KEM is a centre of excellence for treating rare diseases. Under the National Rare Diseases Policy, 2021, even the central government provides financial support of Rs 50 lakh. "However, we are still waiting for the funds for her and have no clue as to when it would be made available for us, as her name is not in the list for 2023-2024. We have to arrange for R35 lakh per annum towards the cost of the life-saving oral drugs. The expensive drugs are unaffordable to any middle class family. Moreover, the cost of ancillary treatment and physiotherapy is additional and hence we have written to the state and central government seeking assistance," she said.

Letter to Deputy CM

"We have approached the state government (written to Deputy CM's- see box) and PMO through online applications and sought support from the government to be more empathetic and provide for the Aakriti's survival. I have requested for either providing free of cost medicine or providing us with financial assistance, but haven't received any response yet," said Singh.

"Meanwhile, we have also started crowd funding, however, we are nowhere near to the cost estimate given by KEM Hospital. There are no other options as to where the funds can be arranged. We have managed to collect about R5 lakh, mostly from our savings and relative's help, but are falling short of over R7 lakh, to take care of the first six months of 2024," the mother said.

KEM's diagnoses

Genetic clinic, department of pediatrics at Seth GS Medical College and KEM Hospital has issued a cost certificate letter dated August 7, 2023 - (copy with this paper).

Excerpts

"Aakriti Singh is receiving treatment at KEM hospital she has been diagnosed to have Spinal Muscular Atrophy Type -1. Aakriti requires 1 bottle (1 bottle = 60 mg) every 30 days. The approximate cost of each bottle including GST is R6.20 lakh. The annual cost (12 bottles for 365 days) is approximately R75 lakh. The cost of treatment is expected to rise over the next five years as Aakriti's weight and age will increase and dose of the drug Risdiplam depends on weight and age of the patient. This certificate is being issued on request of parents to facilitate the family in obtaining financial assistance for Risdiplam.

Alpana Sharma, founder of Cure SMA Foundation, said, "Aakriti's parents are registered members of CureSMA Foundation of India. (A pan India foundation working exclusively for the SMA Patients and families to create awareness about this disease and to build a robust infrastructure for the accessibility of treatment). We are working with Kirti Singh to make this life-saving drug available for Aakriti."

"We have made several requests to both the state and central government for support. Only intervention and support from the government can help us save the precious lives of our children. We are constantly meeting with the National Health Mission (NHM) officials and state government officials but all our pleas have fallen on deaf ears. We have met with the officials and made appeals for the Chief Minister (CM) Emergency Fund and CM Relief Fund. Even though we were assured assistance, no funds have been approved or released, till now," Sharma said.

Rs 6.20 l
Cost of one dose of oral life-saving drug