Thiruvananthapuram, Mar 25 (PTI): As the Ministry of Health and Family Welfare is finalising the long-pending National Policy on Rare Diseases, the Kerala state health department has sought financial support from the Centre in the form of a matching grant to expand treatment for the diagnosed rare disease patients in the state.
According to Dr Rathan U Kelkar, Director, National Health Mission, Kerala, the state is keen to expand this support programme for all patients diagnosed with treatable conditions, for which the Drugs Controller General of India (DCGI) has already approved therapies.
However, it would need support from the Central government in the form of a matching grant, and a request has been sent in this regard.
The state government had in September last year started an initiative to enrol two toddlers for the life- saving Enzyme Replacement Therapy (ERT) at the Government Medical College, Kozhikode.
Both these children were diagnosed with Pompe disease, a life threatening LSD, which requires sustainable treatment support in order to allow them to live a near healthy life.
According to medical experts, Kerala, along with Karnataka and Tamil Nadu are the only three states which have demonstrated a proof-of concept to provide finding support to rare disease patients.
'We now expect the Centre to acknowledge the efforts and encourage these states with a matching grant to expand the life-saving treatment to at least those patients for which the Drugs Controller General of India (DCGI) approved therapies are available,' he said.
While this move was hailed by patients and care- givers, as this offered them a ray of hope to an otherwise neglected cause, there are still 28 other patients in the state, all diagnosed with Pompe disease, who have been awaiting for long to start treatment.
Representatives of the Lysosomal Storage Disorders Society of India (LSDSS), a patient support group, had earlier sought the immediate intervention of the state government to extend support for the diagnosed patients, awaiting life- saving treatment.
According to Manoj Manghat, State Coordinator of LSDSS, the delay in the finalisation of the revised National Policy for Rare Diseases and lack of any institutional funding support for Group 3 disorders like Pompe disease, have only caused great anxiety and uncertainty to the patient community.
Patients, mostly children, and caregivers have, however, expressed serious concern and risk to their lives at the lack of any clear funding mechanism to support treatment to the Group 3 disorders, like Lysosomal Storage Disorders (LSDs), he said adding majority of the patients are unable to mobilise funds to support their treatment, and any further delay in the formulation of the National Policy with sustained funding mechanism will only shorten their survival prospects.PTI UD SS PTI PTI