NEW DELHI: The Delhi high court on Wednesday asked the Centre to consider if it can include patients above the poverty line for subsidised treatment in cases of rare genetic diseases.
HC said even people above the poverty line cannot afford the treatment for these rare diseases as the cost spirals beyond control. Justice Manmohan asked the Centre to consider if its ‘National Policy for Treatment of Rare Diseases’ can include such patients.
“The Centre may consider granting subsidy in graded form that too inversely proportional to the income of the patients or their guardian. The government is also directed to expeditiously consider possibilities for reducing the price of drugs for ‘orphan diseases’,” the court noted.
HC took note of the fact that a patient, who had come to the court seeking subsidised treatment, died during the pendency of the plea, and ordered the government to prepare a policy for the Delhi government in this regard by April 13 so that persons above poverty line can also avail subsidy.
The court was hearing a batch of pleas filed by patients of rare diseases like gaucher and had been denied treatment at ESIC hospitals. All of them did 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 the first round of ERT in the other, a 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 came after the death of one of the two patients, whose case was directed to be processed by this court on February 2.