Madhya Pradesh High Court Orders Finalization of National Policy on Rare Diseases Within Six Months

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The petitioner filed a writ petition under Article 226 of the Constitution; he needed financial help for a medical emergency. The Court has ordered the Government to complete the policy within six months.

Brief Facts of Case 

The petitioner’s four-year-old suffers from a rare disease, Gaucher disease. The patient requires to undergo an Enzyme Replacement Therapy (ERT) every 14 days.On 14.02.2019, the Court passed an interim order to arrange for the finances. The National Health Mission agreed for 40% and the Company for 33%. As well as the petitioner for 27% from his resources.The patient missed one his vial on 17.06.2020. The non-administration of the vial may prove fatal.The petitioner is unable to arrange for any more funds due to the COVID-19 induced economic conditions.

The Centre has drafted but not finalized the National Policy on Rare Diseases, 2020. There has been a delay of over one year.Further, there have been discrepancies in the scheme of Rashtriya Arogya Nidhi (RAN) 2019-20. The fund was created for one-time financial help to patients below the poverty line. However, the Centre has not released its 60% share in the 100- crore fund.Thus, the petitioner seeks directions to streamline the finances for medical support.

Submissions by the Petitioner

The petitioner’s counsel submitted the nature of the disease. The patient requires lifelong treatment at the appropriate time. But the cost of treatment is prohibitive. It has been difficult for the petitioner to arrange funds. This is due to the current situation created due to COVID-19.

The Central Government had made a statement to complete the National Policy for Treatment of Rare Diseases within nine months. It has been a year ever since. Now, the petitioner requires further help to arrange for the medicines.

The cost of treatment has been increasing. It requires two to three lakhs per kg with a corresponding increase in the weight of the child. As of today, the treatment costs Rs. 59 lakhs.

Submissions by the Respondents

The respondents include the Union of India and the National Health Mission. As well as the State of Madhya Pradesh.The Central Government has implemented the policy of 2017. Its counsel has submitted that the renewal of policy is in process. The State of Madhya Pradesh has not shown any interest in this regard.It is for the State Government and not the Centre to ensure necessary funds for rare diseases.

The Centre’s Rashtriya Arogya Nidhi provides one-time help. This is for patients below the poverty line. The petitioner does not belong to such a category. Moreover, it does not cover rare diseases like Gaucher. There is no scheme which provides recurring help for rare diseases like Gaucher and MPS. Both of which incurs exorbitant costs.

Thus, the Central Government cannot extend help in the present matter.

The National Health Mission has already provided 40% of the cost of treatment.The NHM counsel also contended that the Centre or State had not released its 60% share in the RAN scheme. The scheme makes up Rs—100 crores for rare diseases.

Court’s Observations

The Court has observed medical technicality of the issue. The Enzyme Replacement Therapy is expensive and requires continuous financial help. The absence of timely treatment may prove fatal to health.Incorporated under Article 21 of the Constitution, is the fundamental right to health. The State should ensure that it is not violated.

The Supreme Court and High Courts have directed the Centre to release funds. This is for patients suffering from rare diseases. The Central Government cannot shy away from its responsibilities.Moreover, the non-cooperation of the Madhya Pradesh Government must be resolved. The same party rules The State and Central Government.

Furthermore, rare diseases like Gaucher need continuous financial help. The finalized policy must not have two conditions. Conditions of ‘one-time financial help’ and ‘below poverty line’.The Court asserted the following. That- “A disease does not seek a child/person based on his/her financial ability or economic condition.”

In the light of submissions and observations, the Court decided the present matter.

Court’s Decision

Justice Nandita Dubey pronounced the judgement. The Court has issued interim orders to the State and Central Government.

The Court directed the Central Government to pay its share in the cost of treatment. The State Government has to pay the balance amount for one year. This is to ensure uninterrupted treatment.The Court has ordered finalization of National Policy on Rare Diseases, 2020. This will be within six months.Further, the State Government can recover the Centre’s share as per new policy.


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