New Delhi: The Delhi high court on Tuesday pulled up the Union government for not utilising funds collected to provide assistance for the treatment of children suffering from rare diseases, saying it will not permit these kids to “die despite funds being available”.
Calling it a “mockery of the whole thing”, Justice Rekha Palli said no justification has been given by the Centre for not utilising the unspent budget allocated from the last three years to the rare diseases fund.
“What is this? Children are dying because of lack of funds... What about the corpus which is available with the government here. I will not permit these children to die despite funds being available. When there are funds, why should the children suffering from rare diseases not get it?” the judge said.
The court was hearing a bunch of petitions filed on behalf of children suffering from rare diseases like Duchenne Muscular Dystrophy (DMD), Hunter’s syndrome, seeking direction to the Centre to provide them uninterrupted and free of cost treatment as the therapy is very expensive.
DMD, one of the various forms of muscular dystrophy, is a rare genetic disease that affects boys almost exclusively and causes progressive weakness. Mucopolysaccharidosis II or MPS II (Hunter Syndrome) is a rare disease that is passed on in families and mainly affects boys and their bodies cannot break down a kind of sugar that builds bones, skin, tendons and other tissues.
{{/usCountry}}DMD, one of the various forms of muscular dystrophy, is a rare genetic disease that affects boys almost exclusively and causes progressive weakness. Mucopolysaccharidosis II or MPS II (Hunter Syndrome) is a rare disease that is passed on in families and mainly affects boys and their bodies cannot break down a kind of sugar that builds bones, skin, tendons and other tissues.
{{/usCountry}}In September, the court had asked the Union government to take steps for transferring ₹63 crore from the crowd funding account, lying with the Kerala high court, to that of the rare diseases account.
On Tuesday, additional solicitor general (ASG) Chetan Sharma told the court that it has filed an impleadment application before the Kerala high court. He said even though the application has been allowed, not much progress has been made in using the funds.
This did not go well with the court, which said the Centre’s affidavit did not give any justification for not mentioning the names of the patients on the online portal.
While directing the Centre to come back with a concrete answer, Justice Palli said, “On the next date, the ASG will also obtain instructions whether it is possible to provide treatment to petitioners and thereafter adjust the amount which may be received in the portal set up for the set purpose”.
The court listed the matter for further hearing on December 15.
The court also asked the ASG to take instructions as to whether it is possible to provide treatment to the petitioners and adjust the amount which may be received in the portal set up for the set purpose.