Bhubaneswar: In a move likely to bring respite to parents in the state fighting for some palpable relief from the hassles and high expenses involved in the treatment of ‘Duchenne Muscular Dystrophy’ (DMD) to their suffering children, the Odisha government Friday said it will explore possibilities for opening a Centre of Excellence (CoE) for the treatment of the rare genetic disease. Special Secretary, of Health Department Dinabandhu Panda, Additional Secretary Subhananda Mohapatra and joint secretary Mamata Barik who held discussions with a delegation of Odisha Duchenne Muscular Dystrophy Association (ODMDA) said that the government is studying the various treatments available for DMD.
Accordingly, a framework is being designed to address the issue effectively. The Health Department has also sought details of a MoU signed by the Madhya Pradesh government for the establishment of CoE which would be a reference point for opening such a centre in Odisha. Currently, there are 11 CoEs across the country including one in neighbouring West Bengal.
Earlier in the day, more than 80 parents of children suffering from DMD staged a protest at Lower PMG to press for the fulfilment of their 8-point charter of demands, including immediate treatment and monthly pension for their immobile kids. Around 60 of the suffering children sat on a dharna. The agitating parents from across the state voiced their resentment over the alleged apathy of the Union and state governments in devising calibrated strategies to deal with the dreaded muscle disease.
Although they expressed their gratitude to state government for providing Rs 10 lakh one-time grant for purchase of wheelchairs, regular physiotherapy, ‘treatment’ and other requirements of the patients, the lack of facilities for effective treatment in the state has left them in despair. ODMDA president Bishnu Charan Panigrahi said, “We are leading a very miserable life as our children have lost mobility and most of them are wheelchair-bound. We had staged our first agitation here in February, following which the state government announced to provide Rs 10 lakh to each DMD child.
However, we have to stage another dharna today as our pending demands remained unfulfilled. Immediate treatment of our children is our primary demand.“ Panigrahi also urged the government to spread awareness and educate people about the disease so as to prevent it at prenatal stage. “A test is available which can find out if the foetus has the defective gene. Many DMD cases would be prevented If the government starts spreading awareness about the test,” he said. Dinesh Behera from Bhadrak, whose 12-year-old son is suffering from the disease, said parents have to carry children all the way to the Kolkata CoE for basic tests. “We urge the government to open a CoE for DMD in Bhubaneswar as it will save the child and parents from a lot of hassles and expenses,” he said.
