Andhra Pradesh High Court - Amravati
The vs Unknown on 7 January, 2022
HON'BLE SRI JUSTICE R. RAGHUNANDAN RAO
W.P.No.17020 of 2021
ORDER:
The petitioner, who is a minor, is suffering from Gaucher disease,
which is classified as a rare disease. The treatment for this disease is
Enzyme Replacement Therapy. This treatment requires fortnightly
injunction of a medicine known as Cerezyme (Imiglucerase for injunction).
This requires consumption of about 26 vials per year. The rough cost of
such treatment per year is Rs.25 lacks. 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 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. The Sri Gundapu Rajesh Kumar, learned counsel for the
petitioner, has also cited various judgment 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.
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W.P.No.17020 of 2021
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 assistance under Arogyasree Scheme
for medical treatment of weaker sections of society.
7. Heard Sri Gundapu Rajesh Kumar, 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 learned Government pleader also
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W.P.No.17020 of 2021
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 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 judgement of the High Court of Delhi had
(2014) SCC Online Del. 1508
2016 (4) KLT 491:: 2016 (4) KLJ 372
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W.P.No.17020 of 2021
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 provided with Enzyme
Replacement therapy, 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.
_________________________
R. RAGHUNANDAN RAO, J.
7th January, 2022
Js.
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W.P.No.17020 of 2021
HON'BLE SRI JUSTICE R. RAGHUNANDAN RAO
W.P.No.17020 of 2021
7th January, 2022
Js.
