IGICH to treat patients with rare diseases for free
According to sources, the cost of treatment would run into thirty-five crore rupees annually, which will be footed by the State Government.
Bengaluru: Parents and guardians of patients suffering from rare diseases have always found it difficult to arrange funds for the treatment of their children with rare diseases. However, with the Karnataka high court on July 25 directing state-run Indira Gandhi Institute of Child Health (IGICH) to provide free treatment to those who are affected by Lysosomal Storage disease (LSD) and to comply with its earlier order passed on June 8, 2015, patients are now hopeful of being spared the exorbitant costs.
“It has been a long wait for one-and-half-year for children with Lysosomal Storage disease (LSD). In spite of medicine and treatment available we have been losing children. We are now sure that treatment will be given,” says Prasanna Kumar Shirol, Co-founder, Organization for Rare Diseases in India (ORD). He said some 45 children have applied for treatment at IGICH, of which a few have already succumbed.
In 2015, the high court had directed the medical authorities in the IGICH to provide medical treatment to those patients suffering from Gaucher, Pompe, Fabry and four types of Mucopolysaccharidosis (MPS), namely, MPS Type I (Hurler Syndrome), MPS Type II (Hunter Syndrome), MPS Type IV (Morquio Syndrome) and MPS Type VI (Maroteaux-Lamy Syndrome), free of cost. The reason for this is that treatment for such rare genetic diseases where enzyme replacement therapy (ERT) is called for, is unaffordable for most patients. Their families have to face many hurdles in locating appropriate healthcare facilities and support centres. With the court order, the 45 children with LSD would be receiving treatment at IGICH immediately. According to sources, the cost of treatment would run into thirty-five crore rupees annually, which will be footed by the State Government.