Pa­tients with rare dis­or­der ap­peal for free treat­ment

Hindustan Times ST (Jaipur) - - Rajasthan - HT Cor­re­spon­dent htraj@hin­dus­tan­

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

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