MUMBAI: A protest by mother and father exterior Mantralaya, the state secretariat, compelled well being minister Prakash Abitkar out of the seven-storey constructing, earlier than he escorted them inside to confront a life-or-death subject – a remedy protocol that would doubtlessly save their youngsters’s lives.
Prakash Abitkar
The mother and father on Tuesday instructed the minister that hospitals have been neglecting youngsters stricken with Subacute Sclerosing Panencephalitis (SSPE), a uncommon, progressive and often deadly mind dysfunction attributable to a faulty measles virus. They needed the federal government to determine a remedy protocol for his or her youngsters as hospitals are at the moment refusing to attend on these youngsters as there is no such thing as a identified remedy for the situation. The mother and father had introduced 25 sufferers with them, to make an impression on the minister.
SSPE is a uncommon however devastating neurological dysfunction that usually develops years after an preliminary measles an infection, usually in youngsters and adolescents. The illness is characterised by progressive cognitive decline, behavioral adjustments, and neurological signs, in the end resulting in dying. There are 60 to 90 sufferers of SSPE within the state, Abitkar later mentioned.
Sagar Pujari, 36, was among the many group of fogeys at Mantralaya. He mentioned he had visited Shenzhen in China to obtain 30 doses of Ribauirin vaccine for his seven-year-old daughter Ovi, an SSPE affected person. “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,” mentioned Pujari.
He mentioned procuring the vaccine for SSPE may be very troublesome. “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 mentioned.
“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 well being minister Prakash Abitkar instructed the protesting mother and father that the state authorities would draft a coverage comprising a correct remedy protocol, which might additionally guarantee availability of the vaccine for the situation.
“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 mentioned.
The minister instructed 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 additionally escorted the households to chief minister Devendra Fadnavis, who assured them he would look into the matter.