The Delhi high court has asked the Centre to give a timeline for finalising the Draft Health Policy 2020, which includes the guidelines for treatment of rare diseases. The court said that “Right to Health is a fundamental right and no child in our country should be deprived of treatment because of the drug being expensive”.
Justice Pratibha M Singh noted that the Centre had not finalised the health policy on rare diseases despite the lapse of one and half years since an earlier direction of the court. She said that the Draft Health Policy 2020 has also “yet not seen light of the day” while the earlier one is kept in “abeyance”.
Hearing two pleas seeking treatment of children suffering from rare genetic disease known as Duchene Muscular Dystrophy (DMD) which was beyond the capacity of the parents because of the high cost of drugs and cure, the single judge bench remarked that “such a policy cannot be left indefinitely when young human lives are on stake” .
DMD is a severe type of muscular dystrophy that primarily affects boys where muscle starts weakening at a young age.
During the hearing, the Central government standing counsel, appearing for the ministry of health, told the court that they would not be able to bear the entire cost of the treatment but it would be made possible through donations by private parties and others. The Centre had told the court in an affidavit that the Draft policy has been released and it is still in consultation.
{{/usCountry}}During the hearing, the Central government standing counsel, appearing for the ministry of health, told the court that they would not be able to bear the entire cost of the treatment but it would be made possible through donations by private parties and others. The Centre had told the court in an affidavit that the Draft policy has been released and it is still in consultation.
{{/usCountry}}The matter would be now heard on January 28.