Andhra Pradesh High Court - Amravati
The vs Unknown on 18 April, 2022
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THE HONOURABLE SRI JUSTICE BATTU DEVANAND
WRIT PETITION No.9951 of 2022
O R D E R:-
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 (ERT). This treatment requires 26 Cerezyme
vials per year and therefore, she needs 52 Cerezyme
vials for two years. The rough cost of such treatment
for two years is Rs.38,37,178/-. 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
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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 Gundapu Rajesh Kumar, 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
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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
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
(2014) SCC Online Del.1508
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
2016 (4) KLT 491:: 2016 (4) KLI 372
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 : 18.4.2022
Note: Furnish C.C. by 19.04.2022.
klpd
THE HONOURABLE SRI JUSTICE BATTU DEVANAND
WRIT PETITION No.9951 of 2022
Date : 18.04.2022
klpd
