Andhra Pradesh High Court - Amravati
Baby Ananya Sri Bhargav Thanga, vs The State Of Andhra Pradesh, on 9 March, 2022
Author: Battu Devanand
Bench: Battu Devanand
1
THE HONOURABLE SRI JUSTICE BATTU DEVANAND
WRIT PETITION No. 5859 of 2022
O R D E R:-
The petitioner, who is a minor, is suffering from Pompe disease, which is classified as a rare disease. The treatment for this disease is Enzyme Replacement Therapy ( ERT). This treatment requires 140 Mg (3 vials) Myozyme infusion every fortnight and therefore, she needs 78 vials per year. The rough cost of such treatment per year is Rs.39,87,204/-. It is stated that there are 2 to 3 patients in the State of Andhra Pradesh, who require such treatment.
2. The petitioner is from financially weaker section. The father of the petitioner does not have the financial ability to continue this treatment and had approached various authorities of the State for assistance to bear such expenditure. However, the authorities of the State are unwilling to take care of this expense on the ground that the State cannot afford to pay out such large amounts of money for one patient on an annual basis.
3. The petitioner has thereupon approached this Court by way of the present writ petition claiming 2 that her right to life enshrined under Articles 19 and 21 of the Constitution of India is being violated as there is a duty cast on the State to ensure that she is able to lead a full productive life, which is not cut-short by this disease.
4. Sri C. Prakash Reddy, learned counsel for the petitioner, has also cited various judgments of the different High Courts as well as the judgments of the Hon'ble Supreme Court to contend that the petitioner is entitled for treatment of this disease, at the cost of the State.
5. Learned Assistant Solicitor General appearing for the Union of India, has filed written instructions along with certain material to contend that the Central Government is clearly not in a position to bear the burden of such cost. The National Policy for Rare Disease 2021 was also attached to these instructions.
6. The learned Government Pleader for Medical and Health also placed material including various Government Orders issued by the State Government, from time to time, setting out the facilities being offered by the Government including financial 3 assistance under Arogyasree Scheme for medical treatment of weaker sections of society.
7. Heard learned counsel for the petitioner, learned Assistant Solicitor General appearing for the Union of India and the learned Government Pleader for Medical and Health appearing for the State of Andhra Pradesh.
8. The learned Government Pleader has produced various Government Orders issued by the Government including G.O.Ms.No.227 dated 09.06.2006; G.O.Ms.No.116 dated 21.04.2007; G.O.Rt.NO.134 dated 01.02.2010; G.O.Ms.No.94 dated 23.05.2014; G.O.Ms.No.35 dated 15.02.2019; and G.O.Ms.No.59 dated 13.06.2019.
9. Under these G.Os., the Government, had instituted a health insurance scheme called Arogyasree, for providing free treatment of various ailments for economically weaker sections of the society. Over time, the scheme was expanded to cover even major surgeries. However, the said health insurance scheme does not provide for treatment of rare diseases of the nature required in the case of the petitioner. The parawise remarks placed before this Court by the 4 learned Government pleader also does not indicate any intent on the part of the State Government to bear the annual cost of such treatment.
10. The learned Assistant Solicitor General also placed before this Court a copy of the National Policy for Rare Diseases, 2021. A perusal of this policy would show that the Union of India is not looking at coverage at the individual level and the policy is more a macro level scheme. The policy while considering individual cases recommends voluntary crowd funding for treatment of rare diseases rather than provide for any treatment at the individual level.
11. It is clear that neither the State Government nor the Union of India are looking at any intervention at an individual level and cases such as the petitioner would not be covered by any of the schemes or policies of either the State Government or the Central Government.
12. Similar cases have come up before the various High Courts. A learned Single Judge of the High Court of Delhi, by an order dated 17.04.2014, in Mohd. Ahmed vs. Union of India and Ors.,1 reviewed the 1 (2014) SCC Online Del.1508 5 law in such matters and held that there was a duty cast on the State to ensure that all it's citizens have access to medical services as it is an inalienable part of the Right to Life contained in Article 21 of the Constitution of India. The learned Single Judge had then directed the State of Delhi to provide Enzyme Replacement therapy at AIIMS , free of charge to the petitioner in that case.
13. A learned Single Judge of the High Court of Kerala, in Manoj M. vs. State of Kerala and Ors.,2 had after an extensive review of the law and following the aforesaid judgment of the High Court of Delhi had directed the State to provide Enzyme Replacement Therapy, free of charge to the petitioner. The learned Judge was also pleased to observe that, " just because one is poor, the State cannot let him die". I concur with that view wholly and completely.
14. In the circumstances, the only way this case can be closed by this Court is to allow it by directing the State of Andhra Pradesh and the Commissionerate of Health and Family Welfare & National Health Commission to ensure that the petitioner herein is 2 2016 (4) KLT 491:: 2016 (4) KLI 372 6 provided with Enzyme Replacement Therapy ( ERT), free of charge. The State is also free to explore all means of financing the treatment of the petitioner, including sourcing the funds through crowd funding.
15. Accordingly, the writ petition is allowed. There shall be no order as to costs.
As a sequel, pending miscellaneous petitions, if any, shall stand closed.
______________________________ JUSTICE BATTU DEVANAND Date : 09.3.2022 eha 7 THE HONOURABLE SRI JUSTICE BATTU DEVANAND WRIT PETITION No. 5859 of 2022 Date : 09.03.2022 eha