Calcutta High Court (Appellete Side)
Muscular Dystrophy Patient Welfare ... vs Ministry Of Health & Family Welfare & Ors on 25 April, 2023
Author: Hiranmay Bhattacharyya
Bench: Hiranmay Bhattacharyya
25.04.2023
Ct. No.1
Item Nos.3, 4 & 5
PG/KS
W.P.A.(P) 20 of 2020
Muscular Dystrophy Patient Welfare Society & Anr.
-Vs.-
Ministry of Health & Family Welfare & Ors.
With
W.P.A. 6300 of 2023
Yuvaan Singh & Ors.
-Vs.-
Union of India & Ors.
With
W.P.A.(P) 9 of 2023
Parivaar Bengal & Anr.
-Vs.-
State of West Bengal & Ors.
Mr. Bikash Ranjan Bhattacharya, Sr. Adv.
Ms. Nandini Mitra
Mr. Samin Ahammed
Ms. Saloni Bhattacharyya
.....For the Petitioners
in
(W.P.A.(P) 20 of 2020)
Mr. Biswaroop Bhattacharya
Mr. Sidhdhatha Sankar Mandal
Ms. Arunima Das Sharma
.....For the Petitioners
in
(W.P.A. 6300 of 2023)
Mr. Kaushik Gupta
Ms. Srimoyee Mukherjee
.....For the Petitioners
in
(W.P.A.(P) 9 of 2023)
Mr. Asok Kumar Chakraborti
Mr. Arijit Majumder
.....For the U.O.I.
in
2
W.P.A.(P) 20 of 2020) &
W.P.A. 6300 of 2023
Mr. S. N. Mookherje, Ld. A.G.
Mr. T. M. Siddique
Mr. Nilotpal Chatterjee
.....For the State
in
(W.P.A.(P) 20 of 2020)
Mr. S. N. Mookherje, Ld. A.G.
Mr. Samrat Sen, Ld. A.A.A.G.
Mr. Anirban Ray, Ld. G.P.
Mr. T. M. Siddique
Mr. Nilotpal Chatterjee
.....For the State
in
& (W.P.A.(P) 9 of 2023)
Mr. Tapan Kumar Mukherjee, Sr. Adv.
Ms. Debdooti Dutta
.....For the State
in
(W.P.A. 6300 of 2023)
1. Pursuant to the order passed on 17th April,
2023, there have been some developments and
the learned Advocate General has placed before
us a report dated 24th April, 2023 submitted by
the Director, I.P.G.M.E.& R, Kolkata. The said
report is taken on record and from which, we
find that number of enlisted cases are 34, the
total number of application received is 25 and
the total number of registered cases is 22
(16DMD/6 Non DMD) and number of uploaded
cases is 16 (All DMD cases).
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2. With regard to the uploading of the information
of these patients suffering from rare diseases, it
has been stated on the last occasion that an
integration has to be done with the portal,
which may take a month's time. It is an
admitted fact that State of West Bengal was
very late to establish the portal, which has
contributed to the delay.
3. We are of the view that there should be no
further delay and the concerned authority
should take steps on a war footing so that the
relevant details are uploaded in the portal at
the earliest. As rightly pointed out by the
learned advocate appearing for the writ
petitioners in W.P.A.(P) 9 of 2023, the purpose
behind uploading in the portal and issuance of
UDID card is not only for treatment but there
are other benefits, which have been extended
such as full course fee waiver for those
students of various courses at all NIs/CRCs,
who are UDID card holders. Furthermore, a
person suffering from such rare disease, if he
happens to travel outside the State of West
Bengal unless and untill the UDID card is
available, he will not be in a position to get
treatment in the other States or for such
benefits, if the concerned person is pursuing a
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course of study or matters related therein.
Therefore, the issuance of the UDID card is of
utmost importance and the concerned
authorities of the State of West Bengal should
give a serious thought to the matter and avoid
unnecessary delay in making the web portal
functional and uploading all the data.
4. With regard to financial support, it is submitted
by the learned Advocate General that regardless
of the fact as to whether UDID cards have been
issued to persons suffering from rare diseases,
if those persons are brought to the centre of
excellence at Kolkata, they will be examined
and necessary follow up action with regard to
treatment will be taken care of in the centre of
excellence apart from the State reimbursing
their entire travel expenses from whichever
place they had travelled to consult with the
doctors at the centre of excellence. This
submission made on behalf of the State of West
Bengal is placed on record and the appropriate
authority of the concerned department shall
ensure that whenever such persons suffering
from such rare diseases come to the centre of
excellence, they should not only be examined,
screened and treatment be effected but the cost
incurred by them to undertake the journey to
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reach the centre of excellence should be
promptly reimbursed. In this regard, an order
can always be passed by the concerned
authority of the State Government, which will
clear any ambiguity in the minds of those
persons, who are suffering from such rare
diseases.
5. The writ petitioners viz., the society and the
individual writ petitioners shall also use their
resources to identify such of those persons,
who are suffering from such rare diseases and
assist them in travelling from other parts
within the State of West Bengal to the centre of
excellence for being treated for such rare
diseases.
6. With regard to 11 persons on whose behalf
W.P.A. 6300 of 2023 had been filed, which has
been tagged alongwith these public interest
litigations, the learned advocate for the
petitioners submitted that with the efforts
taken by the learned Advocate General, the
names of the 11 persons have been uploaded
but other follow up action is required to be
taken and we are confident that the concerned
department of the State of West Bengal shall
ensure that all follow up action should be taken
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consequent upon the uploading of the names of
those 11 persons.
7. On the last occasion this Court posed a query
as to whether one more centre of excellence can
be established within the State of West Bengal
as people from the northern part of the State
would find it difficult to travel to Kolkata. We
find that there are guidelines for such purpose
and unless and until the necessary
infrastructure is available, a centre cannot be
notified as a centre of excellence. Therefore, we
would have advised the State Government to
identify any of the hospitals or institutions
situated in the northern part of the State,
which can be recognized as a centre of
excellence and for such purpose the necessary
infrastructure, both in terms of manpower and
machinery can be established and intimated to
the Central Government, who, on inspection
can take appropriate action for notifying that
hospital or institution as a centre of excellence.
Effective steps be taken in this regard within a
period of six months from date.
8. The learned Additional Solicitor General has
placed before this Court an affidavit filed on
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behalf of the first respondent viz.,, the
Department of Health and Family Welfare, Government of India. In the said affidavit, it has been stated that the financial support entitled for the patients suffering from any category of rare diseases will be up to Rs.50,00,000/- as per the office memorandum dated 19th May, 2022. The financial support will be provided to the patients for their treatment in any of the centre of excellence mentioned in the policy. It is further stated that in accordance with the guidelines dated 11th August, 2022 and the 2021 policy, a sum of Rs. 1,20,00,000/- was released on 7th December, 2022 against four patients and on a further request from the centre of excellence at Kolkata, a sum of Rs. 46,40,000/- has been released on 20th March, 2023 for four patients suffering from rare diseases. The documents in support of such averment has been annexed to the affidavit. The affidavit filed by the Central Government is taken on record.
9. Since we are inclined to monitor the matter, further progress in the matter shall be reported by the concerned authority of the State 8 Government by way of a further report on the next hearing date.
10. As observed earlier, the issue relating to the web portal is of utmost seriousness. It is rather surprising to note that in the State of West Bengal the number of UDID cards generated as on 16th October, 2022 is only 9. The figures, which have been given in respect of other States are phenomenal and we find that West Bengal is the only State, which has got a single digit figure. This position does not augur well for the system as well as the State.
11. Therefore, the Principal Secretary, Department of Health and the Principal Secretary, Department of Women & Child Development and Social Welfare, Government of West Bengal should take up this matter with utmost seriousness and as this Court is monitoring the matter, any unnecessary delay will not be appreciated and the authorities should not come to adverse notice. This direction should be taken in the right spirit and not as an adversarial direction as the State is under a Constitutional obligation to protect the health of its citizens.
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12. Let further report be filed two days before the next hearing date after serving advance copies on the learned advocates appearing for the parties and the learned Additional Solicitor General.
13. The learned advocate appearing for the writ petitioners in W.P.A.(P) 20 of 2020 submitted that she has got a list of persons, who have already been identified of suffering from the rare diseases and those persons should be administered treatment immediately.
14. Let the list be furnished to the learned Advocate General, who shall, in turn, direct the concerned authority to look into the matter so that the grievance expressed is redressed.
15. List these matters on 13th June, 2023 in the same position.
(T. S. SIVAGNANAM) ACTING CHIEF JUSTICE (HIRANMAY BHATTACHARYYA, J.)