Bhubaneswar: For the prevention and management of rare diseases, the state government has formed an eight-member committee to frame a comprehensive state policy, with a special focus on Duchenne Muscular Dystrophy (DMD). Consistent with the existing National Policy for Rare Diseases, 2021, the state policy will not only strengthen detection of conditions in the population and provide proper healthcare to the suffering persons but will also generate awareness about such conditions among the people. The high-level technical committee will be chaired by a special secretary (SS) of the state Health and Family Welfare Department.
Other members include the Director of Medical Education and Training (DMET), DHS, Professor and HoD, Department of Neurology, SCBMCH, Cuttack, Professor and HoD, Department of Medicine, PGIMER and Capital Hospital, Professor and HoD, Department of Paediatric, PGIMER and Capital Hospital, Professor and HoD, Department of Immunology, SCBMCH and Joint Secretary, I/C Scheme Section. DMD symptoms start manifesting early and if left untreated, patients generally lose the ability to walk by the time they are eight to 12 years of age. Early diagnosis of such diseases is a major challenge owing to a variety of factors that include a lack of awareness among primary care physicians, and a lack of adequate screening and diagnostic facilities. The condition is caused by a defective dystrophin gene, which hinders the production of the very vital dystrophin protein. The disease is generally detected at 6 or 7 years of age and progresses rapidly affecting every muscle of the body including the heart and lungs.
Earlier, the Odisha DMD Association (ODMDA) had demanded that as long as medicines are not available, the government should assist parents of DMD-affected children.
ARINDAM GANGULY, OP