Even patients above poverty line can't afford to treat rare diseases: HC

Even people above the poverty line cannot afford the treatment of rare genetic diseases, the Delhi High Court has observed.

Asking the Centre to consider its 'National Policy for Treatment of Rare Diseases' for such patients, Justice Manmohan said the government could consider granting subsidy in graded form and that too, inversely proportional to the income of the patients or their guardians.

"The Central Government is also directed to expeditiously consider possibilities for reducing the price of drugs for 'Orphan Diseases'," the court said.

The court was hearing a batch of pleas filed by patients of rare diseases like Gaucher who have been denied treatment at ESIC hospitals and do not have the capacity to bear the cost of Enzyme Replacement Therapy (ERT).

Petitioners' advocate and activist Ashok Agarwal has been highlighting how poor patients have been running from pillar-to-post to get treatment.

In one such case, a man lost most of his vision while awaiting even the first round of ERT. Another teenage girl was being made to run between ESIC hospitals in Faridabad and Delhi on the issue of domicile.

Justice Manmohan's recent order for inclusion of patients above the poverty line also took into consideration the death of one of the two patients, whose case was directed to be processed by this court on February 2.

It directed the Centre to prepare a policy for the Delhi government on the issue before the next date of hearing, April 13.