State assures policy for rare disorder after parents protest outside Mantralaya

SSPE is a rare but devastating neurological disorder that typically develops years after an initial measles infection, often in children and adolescents

MUMBAI: A protest by parents outside Mantralaya, the state secretariat, forced health minister Prakash Abitkar out of the seven-storey building, before he escorted them inside to confront a life-or-death issue – a treatment protocol that could potentially save their children’s lives.

Prakash Abitkar

The parents on Tuesday told the minister that hospitals were neglecting children afflicted with Subacute Sclerosing Panencephalitis (SSPE), a rare, progressive and usually fatal brain disorder caused by a defective measles virus. They wanted the government to establish a treatment protocol for their children as hospitals are currently refusing to attend on these children as there is no known cure for the condition. The parents had brought 25 patients with them, to make an impression on the minister.

SSPE is a rare but devastating neurological disorder that typically develops years after an initial measles infection, often in children and adolescents. The disease is characterized by progressive cognitive decline, behavioral changes, and neurological symptoms, ultimately leading to death. There are 60 to 90 patients of SSPE in the state, Abitkar later said.

Sagar Pujari, 36, was among the group of parents at Mantralaya. He said he had visited Shenzhen in China to procure 30 doses of Ribauirin vaccine for his seven-year-old daughter Ovi, an SSPE patient. “It started with measles. The virus went to her brain and also damaged her muscles. In the beginning, there were seizures. In the second stage, the patient stops eating, and by the third stage, they remain in a recumbent position on a bed and die,” said Pujari.

He said procuring the vaccine for SSPE is very difficult. “I sold whatever I could to get these injections from China. They have inserted a pipe into my daughter’s brain to inject the vaccine, and she seems to be responding to the treatment. But not everyone can afford it,” he said.

“Our demand is to make the vaccine as well as monetary assistance available to us, as the treatment is really expensive. It could cost as much as ₹4-5 million,” he added.

State health minister Prakash Abitkar told the protesting parents that the state government would draft a policy comprising a proper treatment protocol, which would also ensure availability of the vaccine for the condition.

“It is a rare disease and requires a different protocol for treatment just like Covid-19. They also want the vaccines for the disease to be made available. All these issues can be addressed by bringing out a proper policy, for which I will hold a meeting today itself,” Abitkar said.

The minister told the media, “The shortage of the vaccine is a nation-wide issue. The state government will see if we can procure them directly from a foreign country.” Abitkar He also escorted the families to chief minister Devendra Fadnavis, who assured them he would look into the matter.