Patients with rare disorder appeal for free treatment
JAIPUR: Patients suffering from lysosomal storage disorders submitted a memorandum to the office of health minister Rajendra Rathore on Saturday, demanding the state government to set up a committee for them and provide free treatment.
Lysosomal storage disorders are caused when enzyme sacs called lysosomes fail to digest molecules due to deficiencies. There are over 50 such inherited disorders and most common of them include Gaucher, MPS, Fabry and Pompe. Some of their symptoms include stunted growth, abnormal growth of organs, bones and cardiac ailments.
India has about 400 patients suffering from the genetic disease while Rajasthan has 25 children, each of whom must undergo enzyme replacement therapy (ERT), which costs in the `40 lakh`2 crore range every fortnight. Worse, facilities for ERT are not available in India and has to be imported from abroad.
Lysosomal Storage Disorders Support Society (LSDSS) president Manjit Singh said, “Rathore had announced to set up a committee for the patients at a meeting organised by the society on December 23, 2014. The minister committed to depute a nodal officer to undertake welfare activities such as availing treatment and drugs under National Health Mission and free medicine scheme for patients.
“On the directions of Rathore, the committee has been formed and was told by the ministry to recommend a budget for procurement of ERT but patients still await treatment. Meanwhile, five children with the rare disease have died,” he added.
Parents and children outside health directorate office in Jaipur. HT