Karnataka government has directed the state-owned Indira Gandhi Institute of Child Health to seek funds to treat only infectious diseases like pneumonia, meningitis /encephalitis, diarrhoea and malnutrition . This is because a large chunk of the pediatric population in the country are succumbing to these infectious diseases which could be treated with antibiotics that are not expensive like the drugs to treat rare diseases or Lysosomal Storage Disorder(LSD). The latter are genetic related disorders and the state government views that it could be controlled if pregnant mothers go in for mandatory pre-natal counselling genetic tests and stall the birth of babies prone to such conditions.
Infectious diseases are life threatening and impacting thousands of children in the state with drug costing Rs. 200 per antibiotic for even less than a month. However, there are around 500 children in the state suffering from rare diseases with medication costs amounting from Rs. 2 lakh to Rs. 35 lakh a month.
Going by the requests from parents of LSD, the 280-bed Indira Gandhi Institute of Child Health has proposed for a Rs. 10 crore annual grant over and above its yearly fund allocation of around Rs. 11 crore to extend treatment which is now postponed.
Since a significant portion of the children who are referred to our tertiary care facility for want of advanced diagnostics and affordable treatment for disorders such as Primary Immuno Deficiency disorders, thalassemia, sickle cell anemia, hemophilia and LSD which are rare, life threatening and chronically debilitating who succumb after a few years after much suffering. Although parents are the worst sufferers, the challenge for the hospital to source the enzyme drugs which are exorbitantly expensive and need government support. Now with the government unable to sanction a separate annual budget, we are now forced to ask parents to approach philanthropists or large technology corporate houses for grants or their employees donating substantial amounts a month to treat a child, Dr. R Premalatha, director India Gandhi Institute of Child Health told Pharmabiz.
The reality is that for each of these rare diseases treatment costs run into lakhs of rupees. More over the incidence of rare diseases is 1 in a 1,000 and despite treatment, quality of life of the child can be improved only to a limited extent. On the other hand, for infectious diseases, the incidence is huge. For instance, pneumonia accounts for 40 percent of the deaths in the age group of under five years. This could be prevented as drugs are easily available and affordable compared to LDS. Therefore, the government views it far more important to focus on common diseases over rare for the present, she added.
LSD, is a group of over 45 rare genetic disorders covering Gaucher disease, MPS I, MPS II, Pompe disease, Fabry disease and MPS VI.
The Institute has now been asked to asked to pay attention in treating pneumonia, meningitis /encephalitis, diarrhea and malnutrition and India could also significantly reduce its child mortality, stated Dr. Premalatha.