Why is SSPE not on rare disease list?, ask Parents

Even as many countries globally recognise Subacute Sclerosing Panencephalitis SSPE as a rare disease it remains a serious health concern in India where it is yet to be included in the list of rare diseasesResponding to the desperate pleas of parents of 25 children suffering from SSPEmdashwho recently staged a protest outside the Mantralaya demanding financial aid for treatment and the establishment of a research centremdashChief Minister Devendra Fadnavis has assured them that appropriate steps will be takenElaborating on the measures Health Minister Prakashrao Abitkar said ldquoWe have taken cognisance of the matter The chief minister will propose setting up a research lab to the Union government Also we will push for SSPE to be included in the list of rare diseases Once that happens one of the civic hospitals will be designated to treat SSPE patients Besides we are also working out the parentsrsquo demand for financial aid for treatmentrdquoThe sufferingsSpeaking to midday Mangilal Hukamichand Jain father of 22yearold SSPE patient Ritik Jain said ldquoAfter protesting for two or three hours we were called inside and Health Minister Prakashrao Abitkar met us He then helped us secure an appointment with the chief ministerrdquoMahadu Belkar a resident of Panvel and father of 15yearold Tanesh Belkar shared ldquoMy son suddenly fell ill when he was 13 We took him to Wadia Hospital after our family doctor couldnrsquot diagnose the illness There after testing his spinal fluid he was diagnosed with SSPE Doctors told us there is no cure and only prescribed sleeping pillsrdquoSince then Taneshrsquos health has continued to deteriorate his parents said Fourteenyearold Shailesh Rajbharrsquos story mirrors the same ordeal ldquoHe suddenly started forgetting things three years ago and then his behaviour began changing After several doctor visits he was diagnosed with SSPE in 2022 when he was just 11rdquo said his father Subash RajbharParentsrsquo demandsldquoWe have spent nearly Rs 17 lakh over the past two years on Taneshrsquos treatment Wersquore now facing a severe financial crisis and are struggling to manage Wersquore requesting the government for financial assistance we desperately need helprdquo said BelkarSeconding him Jain added that parents have requested the chief minister to set up dedicated research laboratories and RampD centres to develop medication for SSPE so that at least newly diagnosed cases stand a chance at better treatmentlsquoNo or incorrect vaccinationrsquoldquoAt present the only cause of SSPE is no or incorrect measles vaccination Sometimes the vaccine isnrsquot administered properly sometimes there are logistical issues like coldchain failures and sometimes its missed altogether especially among lowerincome groupsrdquo explained Dr Sangeeta Rawat dean of KEM HospitalHowever parents claimed that vaccinations had been administered on time ldquoRitik was given the measles vaccine before he turned one around the age of eight or nine monthsrdquo said Jain Symptoms of SSPEgtgt Cognitive decline leading to difficulty in learning and understandinggtgt Personality shifts and irritabilitygtgt Seizures and muscle jerks resembling epilepsygtgt Motor impairment leading to loss of consciousness coma and eventually death SSPE cases in IndiaAs per the Series of Clinical and Medical Case Reports India sees an annual incidence of 21 cases per million peoplegtgt Cause Incorrect or missed measles vaccine is the only known cause of SSPEgtgt Medication No country has yet developed a cureHow does one contract SSPESSPE is contracted through a persistent measles virus infection often years after the initial measles infection The measles virus can enter the brain during the infection and sometimes just remains there reactivating much later and causing SSPEatOptionskeyd0ddb8ef8f1a62a8cdd22fac27fc5ea7formatiframeheight90width728params