BENGALURU: The Centre of Excellence for Rare Diseases at the Indira Gandhi Institute of Child Health (IGICH) in the city, a one of its kind paediatric body in the country, is hamstrung by paucity funds. After a prolonged legal process, parents of children with rare diseases like Gaucher, Pompe, Hunter’s syndrome, etc got a court to issue directions to the state government to release funds.
Though the hospital had estimated that it would cost `30 crore to treat 45 children identified with such diseases, it was brought down to `7 crore after negotiations with the Medical Education Department. But surprisingly, only about `4 crore has been released so far. While `2.9 crore has been released by Department, an additional `1 crore has come from the National Health Mission.
Adding to the woes of the parents of such children is the recently introduced GST, due to which 12 per cent of the `1.4 crore required to treat one child, has to be paid as taxes. Consider this: a child weighing just 10 kg would need `44 lakh per year for enzymes to be infused into the body -- that is `4 lakh per month.
With the funds that has been released, 15 children are currently under treatment. An additional `8.33 crore has been sought to treat another 11 children, said Dr Sanjeeva G N, paediatrician, who runs the Centre and has been treating children with rare diseases for a decade now.
Dr Asha Benkappa, director, IGICH, told Express, “Continuous funding is a constant challenge. We cannot stop treatment midway if the money flow stops. Even today, we have put our people behind chasing the `4.1 crore pending funds. More children with rare diseases are approaching us. Where do we go for funds?” She said the prohibitive cost of treatment for rare diseases make it difficult to work out a sustainable model. “We need to have charity contributions to sponsor a child’s treatment, much like the March of Dimes in the US, a walking event, where they raised money for treatment of neural tube defects. We need to make the general public aware of rare diseases and raise funds for it,” she said.
Stitch in time
Over 25 children suffering from Phenylketonuria (PKU) get indigenously manufactured diet powder from Pristine Organics. This had to be imported earlier and costed about `2,000 per tin. PKU is an inborn error of metabolism. The treatment is a diet of special supplements. Diet should begin as soon as possible after birth and will be lifelong. “The food supplement is now manufactured in the city. Such simple innovations can happen if there is concerted effort,” said Dr Sanjeeva.
ORDI writes to GST Council
The Organisation of Rare Diseases India has written to the GST Council seeking exemption from taxes. “Life-saving drugs and medicines imported directly by the patients free of cost under the charitable access programmes for the treatment of Lysosomal Storage Disorders should be exempt from the payment of integrated goods and services tax,” reads ORDI co-founder Prasanna Shirol’s representation to Finance Minsiter Arun Jaitley. “Previously, a lot of life-saving drugs were exempt from Customs and additional duty. Since we get the enzyme for the enzyme replacement therapy only once in six months, we haven’t paid the 12 per cent IGST yet. We are hoping the GST Council will exempt it before our next consignment of enzymes is imported,” he said.