Delay in funds for free meds plagues spinal muscular atrophy patients

Kochi: Children suffering from Spinal Muscular Atrophy (SMA) and their families are facing a harrowing ordeal due to difficulties in accessing free medicines provided by the state govt for the genetic neuromuscular disorder. The Rs 30 crore allotted for procuring the medicines in the last budget presented by the Pinarayi Vijayan govt on Jan 29 is yet to be transferred to the health department.

Officials said a fresh budgetary allocation would be required for the purpose from the new UDF govt. Caused by mutations in the SMN1 gene, the disorder affects motor neurons and leads to progressive muscle weakness, impairing functions such as crawling, walking, head control, swallowing and breathing.

The free medicines provided to patients aged below 12 by govt over the past five years have significantly improved the lives of several of them, according to the Cure SMA Foundation of India, which estimates that there are around 250 such patients in the state. Their parents have urged UDF govt to resume the free supply of medicines on an urgent basis.

“The medicines are extremely expensive and unaffordable for most families. A bottle of the oral drug, which is a 12-day dose for an adult, costs around Rs 5 lakh. If treatment is started early, there can be significant improvement in the patient’s condition. SMA Type 1 patients often can’t walk or even turn their heads. The chances of Type 1 patients surviving beyond the age of two without medication are almost nil,” a doctor associated with the foundation said.

“The number of SMA-related deaths was around 12 to 18 a year before govt started supplying free medicines. This has come down to around three per year over the past five years. These statistics show how effective is the free medication programme introduced for SMA patients,” the doctor said.

The free medicine programme has enabled many patients to walk. Others are able to lead relatively normal lives with the support of wheelchairs.

“Our daughter started showing symptoms of the disease when she was just four months old. She had gained around 10kg by then. Though we took her to several doctors, they were initially unable to diagnose the condition. By the time she was around nine months old, she started receiving medication for the disease. She frequently suffered from fever, cough and respiratory problems till she was one-and-a-half years old, and was highly prone to infections. She is much better now. The frequent fever, cough and respiratory issues have largely disappeared,” said the mother of a three-and-a-half-year-old girl from Cheruthuruthy in Thrissur.

“She can now walk a few steps with our support. She attends the anganwadi two or three times a week. The shortage of medicines has started to affect our child,” she said.