Chennai, Mar 9: ”Health is a State subject and Tamilnadu has always been a people-focused progressive, welfare State. Despite several judicial proceedings since 2017, not a single rare disease patient has been provided treatment. We urge the Tamilnadu government to act upon its responsibility towards addressing the dire needs of rare disease patients.” said LSDSS State coordinator M Raja.
LSDSS, along with VHS Chennai, organised the 11th Rare Disease Day in India here recently. The event aimed at raising awareness about rare diseases, specifically Lysosomal Storage Disorders (LSDs) such as Gaucher, Fabry, MPS I. There are about 27 rare disease patients in Tamilnadu who have been identified and 4-5 of them have already died due to lack of timely treatment support from the State Government, a press release said.
Eminent stakeholders including cause ambassador actor Karthi Sivakumar, Mediscan Chennai managing and medical director, Dr S Suresh and senior advocate Ramesh spoke about the various aspects of LSDs, its impact on families, long-term management and the challenges.
The event also highlighted the challenges faced by the families with LSDs and their fight to receive treatment support from the Government. In September 2017, Madras High Court ruled in the favour of rare disease patients and directed the State Government to initiate treatment on an immediate basis in government hospitals and genetic centres.
At a recent judicial proceeding on 3 March, 2020, the Chief Justice of the Madras High Court firmly directed the State Government to provide treatment support to rare disease patients and allocate a definitive amount from the State Health budget and inform the court on 11 March about it’s progress, the release said.
”Diagnosis of rare disorders is delayed due to lack of awareness and limitations in availability of diagnostic facilities. Early diagnosis is the key to proper care and treatment.” said Dr S Suresh.
”VHS also has a Centre of Excellence (COE) to enable diagnosis as well as management of patients with rare diseases.” said Mediscan Chennai HoD (Clinical Geneticist), Dr Sujatha Jagadeesh.