'Disease Does Not Seek A Person On The Basis Of Their Financial Ability': MP HC Asks Govt To Finalize National Policy For Rare Diseases Within 6 Months [Read Order]

The Madhya Pradesh High Court has ordered the Central Government to forthwith finalize the National Policy for Rare Diseases, 2020, in not later than 6 months.

The order has been passed by a Single bench of Justice Nandita Dubey in a writ petition filed by the father of a 4-year old "Gaucher" patient, who had been unable to afford his child's treatment, especially amid the Covid crisis.

The court was informed that the National Health Mission (NHM) had borne 40% of the cost of treatment, as a "one-time assistance", under the scheme of Rashtriya Arogya Nidhi (RAN).

Under this scheme, one-time financial assistance is provided to the patients belonging to the families living below poverty line. 40% of the expense has to be borne by NHM and the remaining 60% by the Central Government.

Taking exception to this arrangement, the bench required the Government to ensure that it makes provision for financial assistance on a recurring basis under the new Policy and does not make poverty a precondition for such assistance, as disease does not seek a person on the basis of his/her financial ability.

"While finalizing the 2020 policy, it shall be borne in mind that rare diseases like Gaucher etc. require continuous financial assistance for continuous and uninterrupted treatment and "One Time Financial Assistance" and requirement of being "Below Poverty Line" cannot be made a condition for grant of financial assistance, as disease does not seek a child/person on the basis of his/her financial ability or economic condition," the bench directed.

The bench was conscious of the submission made by the Petitioner that the disease was not a one-time problem, but required a lifelong treatment.

The National Policy for Treatment for Rare Diseases, 2020 is pending with the Central Government. As submitted before the Court, the Policy had been finalized and is placed on the website of Ministry of Health and Family Welfare inviting comments/views of the stakeholders including States and Union Territories and the general public.

Appearing for the Union of India, Advocate Vikram Singh informed the Court that the Centre had not released 60% of its share for the child's treatment under the prevalent RAN Scheme, as the State of MP had neither shown any interest nor communicated with the Centre with regard to the draft policy. It was submitted that unless a new policy is finalized and implemented, no financial help can be extended to the petitioner.

Rejecting this argument, the court observed that the Government could not refuse to discharge its obligations under the scheme, merely on account of "non-cooperation" of the state Government to draft a new policy.

"The Central Government cannot shy away from its responsibilities on the ground that draft policy has not been finalized due to the non-corporation of M.P. State Government. It is for both the governments to resolve the matter amicably, especially when both the governments are ruled by the same party," the court observed while reminding the Government that right to health is a facet of right to life under Article 21 of the Indian Constitution.

The bench has therefore directed the Central Government to immediately pay the 60% of the cost of treatment of Petitioner's son as its share under the RAN Scheme. The court has also asked the State Government to pay the balance of the amount, 40% or more required for the "continuous and uninterrupted treatment" of Petitioner's son for a period of one year.

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