IN THE HIGH COURT OF DELHI STATECIVIL ORIGINALJURISDICTION

.WRITPETITION(CIVIL)No 5446 OF 2014In the matter of :-

Dr. Sanjay Kulshrestha

... Petitioner

VERSUS

Union of India &ors.

...Respondents.

WITH

I. A. NO. OF 2014AN APPLICATION FOR DIRECTION

PAPER-BOOK

(For Index: Kindly see inside)

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PETITIONER IN PERSON: DR. SANJAY KULSHRESTHA-------------------------------------------------------------------------------Filed On: .08.07. 2014B SYNOPSIS

The main objective of filing this PIL Writ Petition under Article 32 read with Article 14 and 21 of the Constitution of India is to seek a direction from this Hon'ble Court to the respondents so that necessary medical insurance policies/health policies by various Insurance agencies or Insurance companies or health scheme by Government bodies are made available for the babies having birth defects and to formulate some guidelines for management of babies having birth defects or congenital diseases in order to reduce the very high Neonatal mortality rate in India as Right to Life for protection of newborns is severely threatened.

Right to live is perhaps the most important fundamental right for everyone and it is also the responsibility of Government to ensure and protect this right of citizens. It has been observed that in cases of newborns and fetuses having some congenital anomalies or birth defects, various health insurance companies and government organizations are making clear cut discrimination. Almost all insurance companies have not extended any medical insurance facility/policy for treatment of various newborn diseases including birth defects during or after pregnancy. It is common knowledge that around 4% of newborns have some major congenital anomalies [approximately 5 lakhs babies per year] and account for 8-15% of peri-natal deaths and 13-16% of neonatal deaths in India. However, at present there is no Government health scheme or medical health insurance policy to protect the life of newly born babies suffering from such diseases or facing such problems during pregnancy. This discrimination by insurance agencies indirectly encourages the parents to opt for abortion in case if some birth defect is detected during pregnancy. Aborting C

fetuses because they may be disabled sends an implicit message of rejection to people with disabilities as if they are no more required in this world and they have no right to live, though this is not true in 80% of cases as babies lead a complete normal life after correction/operation. However, due to unavailability of treatment, lots of fetuses are aborted in India even for minor defects which are easily correctable after delivery. This hostile way of welcoming our tiny human beings, who are going to become future of the country, is certainly can be labeled as violation of their right to life. A healthy outcome of the pregnancy can only be called if both the mother and the baby are discharged in a sound state of health from the hospital. Similarly, this discrimination also exist at the government level as unlike huge budget and schemes for infective disease of newborns, there is extremely inadequate facility for management of newborn babies with congenital problems at government level in our country. Considering the fact that these congenital anomalies are more common in poor class and in a country like India where 30% of the population is below poverty line who cannot afford their meals on time, how it would be possible for them to bear medical expenses of birth defects which is highly specialized and relatively more costly. Simple measures by the Centre and the State government and by the insurance companies can help us to reduce the Neonatal mortality rate in India. With the new enhancement, parents would have option and would have some peace' of mind knowing their babies will be covered from birth with congenital malformations or related other neonatal diseases. The petitioner is a Senior Consultant Pediatric Surgeon who is mainly involved with management of various congenital anomalies or birth defects in the children and an D

Executive Member of Indian Association of Pediatric surgeons and he himself witnessed the pathetic condition of new born infants with congenital anomalies like lip, absent anorectum, spinal or neural defects, absent food pipe, etc. The petitioner is concerned with the high rate of birth defects or congenital anomalies during pregnancy all-over the country. No significant measures have been taken in this regard and there is need of fresh innovative measure to check this menace. Congenital anomalies are a major cause of stillbirths and infant mortality. Evaluation or screening of various organs of fetus during pregnancy for congenital anomalies and their appropriate management during pregnancy or after delivery in high-risk mothers under some National Programme is the important factor to be considered.

Hence this Writ Petition. E

LIST OF DATES

. . . . . 2002-03, Report by National Neonatal- Perinatal Database Report 2002- 2003 supported by Indian Council of Medical Research which says that asphyxia was the single most important cause of still-births, accounting for 45.1% of all cases, followed by congenital malformations seen In 7.90/0 and infections in 2.7%. Copy of the report IS annexed herewith as Annexure P/ 6, page.16. . . . . . 03.04.2012, There is article In the newspaper Times of India) which states that Nearly 70% of infant deaths within the first year of birth) in the country in 2010 took place during the first 29 days of life (neonatal). The copy of the article is annexed herewith as Annexure P/8, page.18. . . . . . . 07.05.2012, Petitioner made a complaint to Chairperson, National Human Right Commission (NHRC), New Delhi regarding this discrimination by Insurance companies and Government. On this complaint the commission sought an explanation from both Ministry of Finance and Ministry of Health (Case File Number: 3094/30/0/2012, Annexure P/1, page.11]. . . . . . 11.09.1012 , Reply under RTI from Ministry of Health regarding availability of pediatric surgical facilities available in India [Annexure 14, page.24] . . . . . . . . . . . 09.10.2012 , The Commission (NHRC) stated and suggested to the complainant to approach General Insurance Council for evolving an appropriate product in this regard. The copy of the order dated 09.10.2012 passed by NHRC is annexed herewith as Annexure P/1, page.11. F .. . . . . 05.12.2012 The petitioner made a representation to Mr. R. Chandrasekaran, Secretary General, General Insurance Council, Mumbai, and to Shri M. Ramaprasad, Chairman, General Insurance .Council, Hyderabad, requesting them to formulate such health policy for congenital anomalies. However, petitioner did not get any reply from the President and Secretary of this Council.

. . . . . 23.02.2013 The petitioner again made a representation to the Secretary and Chairman of General Insurance Council, India, with a copy to Chairperson, National Human Right Commission, New Delhi. However, petitioner did not get any reply from the President and Secretary of this council.

. . .. . .08.2013 Hence this writ petition is being filed by the petitioner before this Hon'hIe Court. 1IN THE HIGH COURT OF DELHI STATECIVIL ORIGINAL JURISDICTIONWRIT PETITION (CIVIL) NO.

OF 2014Under Article 32 of the Constitution of India.

In the matter of:-

DR. SANJAY KULSHRESTHA,

1/171, Delhi Gate,

Gulab Rai Marg,

Agra-2,UattarPradesh

Petitioner

VERSUS

1. UNION OF INDIA

THROUGH SECRETARY,

MINISTRY OF FINANCE,

Jeevan Deep Building, Parliament Street,

New Delhi - 110 001

2. UNION OF INDIA

THROUGH SECRETARY

MINISTRY OF HEALTH AND FAMILY WELFARE

Nirman Bhawan, Maulana Azad Road

New Delhi- 110001

3. UNION OF INDIA

THROUGH SECRETARY,

MINISTRY OF WOMEN AND CHILD DEVELOPMENT

Shastri Bhawan, A-wing,

Dr. Rajendra Prasad Road

New Delhi-110001 . . . . . Respondents2WRIT PETITION UNDER ARTICLE 21, 15 OF THE CONSTITUTION OF INDIATO,THE HON'BLE CHIEF JUSTICE OF HIGH COURT OF DELHI STATEAND HIS COMPANION JUSTICES OF THEHON'BLE COURT OF DELHI STATETHE HUMBLE PETITION OF THEPETITIONER ABOVE-NAMEDMOST RESPECTFULLY SHEWETH :

[1]. That the main objective of filing this PIL Writ Petition under Article 32 read with Article 14 and 21 of the Constitution of India is to seek a direction from this Hon'ble Court to the respondents so that necessary medical insurance policies/health policies by various Insurance agencies or Insurance companies or health scheme by Government bodies are made available for birth defects and to formulate some guidelines for the management of babies having birth defects or congenital diseases in order to reduce the very high Neonatal mortality rate in India as the Right to Life and protection of newborns is severely threatened. [1-A]. Before coming to Honble court, petitioner made following efforts for this cause: The Petitioner made a complaint to Chairperson, National Human Right Commission (NHRC), New Delhi regarding this discrimination by insurance companies and Government. On this complaint the commission sought an explanation from both Ministry of Finance and Ministry of Health [Case File Number: 3094 / 30 /0/2012]. On 9.10.12 the Commission (NHRC) stated and 3

suggested to the complainant to approach General Insurance Council for evolving an appropriate product in this regard. The copy of the order dated 09.10.2012 passed by NHRC IS annexed herewith [Annexure P/1, page.11]. On 5th December, 2012, petitioner has written letters to Secretary General and chairman of General Insurance Council, India, requesting them to formulate such health policy for congenital anomalies. However, petitioner did not get any reply from the president and secretary of this council. On 23rd February 2013, he again reminded the Secretary and Chairman of General Insurance Council, India with a copy to Chairperson, National Human Right Commission, New Delhi. However, petitioner did not get any reply from the president and secretary of this council. On 9th June, 2012, Executive Committee Members of Indian Association of Pediatric Surgeons met Honorable President of India Mrs. Pratibha Patil regarding this discrimination and submitted a memorandum, however no progress could be made in this direction. [2]. The petitioner is a Senior Consultant Pediatric Surgeon, who is mainly involved with management of various congenital anomalies or birth defects in children and an Executive Member of Indian Association of Pediatric surgeon, who is concerned with discrimination by government and health insurance agencies regarding treatment of newborns having birth defects. That the alarming facts regarding mis-management of birth defects in India leading to filing of present writ petition are stated as under:-

[3]. In India reported incidence of major congenital malformations is around 3.7% of all newborn babies [annexure 2, 3 page. 12,13 ]. In India it is estimated that 4

4,95,100 newborns with major malformations are delivered every year [annexure 4, page. 14 ] Congenital malformation is responsible for about 15% of neonatal mortality[annexure 5, page. 15 ]. According to report of National Neonatology Forum of India in collaboration with Indian Council of Medical Research[ICMR] and All India Institute of Medical Sciences, New Delhi, congenital malformations comprised the second commonest cause for still births, third commonest cause for perinatal mortality and fourth commonest cause for neonatal mortality in India.[annexure 6, 7 page. 16, 17 ]. It is equally important to note that whatever figures mentioned above for India are probably grossly underestimated. The reason being these all are hospital based studies based only on the records of admissions in hospitals and are not the population based one. This gives a rough idea about the gravity of the situation in India. As per report in Times of India on 3rd April, 2012 during the period of 2010, 8.62 lakhs newborn died within 1 month in India [annexure 8, page. 18 ]. Than considering the neonatal mortality due to birth defects in India as 15%, approx. 1.3 lakh neonates are dying every year in India due to birth defects. [4]. Almost all Insurance Companies have not extended any medical insurance facility/policy for treatment of various newborn diseases including birth defects during or after pregnancy [annexure 9 to 13 page. 19 to 23]. The insurance companies reimburse only for those expenses that are made towards the mother and that too by few companies only] and they refuse for any expense that is made for treating the baby having some congenital problems. Some agencies like LIC India refuses for health benefit not only to congenital anomalies but also to all kinds of disease of the newborn that is traceable to pregnancy. This hostile way of welcoming our 5

tiny human beings, who are going to become future of the country, is certainly can be labeled as violation of their right to life. Sir, as per terms of Section 2[d] of the Protection of Human Rights Act, "human rights" means the rights relating to life, liberty, equality and dignity. Here right to life and equality of these tiny human beings in terms of medical treatment are being violated.[5]. In rest of other cases these companies are providing medical insurance for majority of diseases with some exclusion only. Excluding some medical conditions by these companies seems to be correct in some situations/diseases which are not genuine or just for cosmetic reasons. However, in cases of newborn & fetus these all companies have flatly refused for ALL KINDS of health problems, be it a major or minor, surgical or medical, or even for life saving diseases. So much so that medical insurance may be denied even in disease occurring later in childhood or in adults, if it is proved that this present disease has a congenital origin or traceable to pregnancy!! Is it not the clear cut discrimination with the little angels!

[6]. Here it is important to discuss about what are the alternative options or facilities available to these babies of birth defects for common people in this country who have been refused for medical insurance. The detection of any fetal anomaly generates lot of stress and anxiety in the couple. This becomes more when couple comes to know that this baby is not going to get medical benefit for its correction, during or after delivery. Although today more that 80% cases of birth defects are correctible and the baby after correction can look forwards an absolute normal life. However, due to unavailability of treatment, lots of fetuses are aborted in India 6

even for minor defects which are easily correctable after delivery. It will not be an exaggeration to say that signature of a doctor on the report who has diagnosed the congenital anomaly is like that of a judge who is passing a death penalty to an accused. If we consider the fetus as a patient, this would amount to euthanasia for a considerable number of babies whose parents cannot afford treatment. Aborting fetuses because they may be disabled sends an implicit message of rejection to people with disabilities or babies having some birth defects are no more required in this world.[7]. Many times the couple chose to continue the pregnancy in the hope for getting the best management after delivery. Once such babies are delivered, due to refusal of insurance companies, in majority of such cases of birth defects parents are forced to take treatment in private hospitals. Parents have to spend for treatment out of their pocket. That is possible only for some selected financially well-of people and significant number of cases remains untreated due to poverty, illiteracy or lack of specialized medical facilities in that area. That is why a back-up of medical insurance is very necessary.

[8]. Although a health insurance would be a good relief for the birth defects, however, Petitioner would also like to mention that besides insurance there is a need of improvement of birth defects management in government sectors also. So simultaneously we have to target the government also for more and more such facilities in govt. sectors. In India large section is very poor and cannot afford a relatively costly treatment in private set up. Its an irony that these of Birth defects are more common in poor class that really depends on government hospitals.

7[9]. Facility for management of newborn babies with congenital problems at government level in our country are extremely inadequate. At present there is no program for the management of birth defects during pregnancy at government level in India. To manage such cases there are only few [40-50] government centers in the whole country that are grossly inadequate for these babies especially considering the fact that every year about 4,95,100 newborns with major malformations are delivered in India. Though the petitioner tried to know the status of pediatric surgery in government sector in terms of total number of pediatric surgeons, specialized pediatric surgical centers and available beds in India through RTI, however, the reply was grossly inadequate and inconclusive[annexure 14, page.24 ]. [10]. There is a need for adequate facility to be available in all the districts and medical colleges and an attempt be made to cover all pregnancies. In fact Government should make a national program for the management of birth defects to ensure adequate facilities available in all districts and medical colleges for routine fetal screening for congenital anomalies. Or alternatively Government should merge the birth defects management program with some other national health program that already running in our country in the field of mother and child health like Reproductive Child Health [RCH] program. Petitioner would like to inform that at present birth defects management is not the part of RCH scheme as replied by Under Secretary, Ministry of Health and family welfare, Government of India in response to his complaint to National human Right Commission [annexure 15, page.25 ]. 8

[11]. Considering the magnitude of problem, there IS a need for a National Program for congenital anomalies or birth defects. A National Program for birth defects will help to achieve the desired reproductive goal to improve the outcome of pregnancy that would indirectly reduce the sufferings and deaths of neonates due to birth defects. A cost effective Antenatal screening program that suits Indian circumstances will reduce the neonatal mortality and morbidity in the following ways: [A] By providing improved prenatal and postnatal surgical and medical care, an improvement in survival rate of newborns with correctable birth defects is expected. [B] By providing therapeutic abortion to incompatible or uncorrectable anomalies the incidence of deliveries/stillbirths of neonates having such anomalies will be reduced. The birth of such undetected uncorrectable anomalies not only cause severe mental trauma to the parents but also increase the figure of our countrys neonatal mortality rate for which we are not responsible directly. [C] By taking preventive measures like genetic counseling and preventive measures both occurrence and recurrence of birth defects is expected to come down. Besides, newborn this program would also cause a reduction in the maternal mortality and morbidity due to obstetrical complications caused by such congenital anomalies. [12]. That the petitioner, therefore, is advancing the present writ petition under Article 32 of the Constitution of India raising the following questions of law:-[A] Whether there is a violation of Article 21 of the Constitution of India which encapsulates the Right to live with freedom?9

[B]. Whether there is violation of rights of the new born infants with congenital anomalies like cleft lip, absent food pipe, spine or neural defects, absent rectum, etc under Article 21 of the Constitution of India?[C]. Whether there is failure on the part of Government and its enforcement agencies in taking proactive steps to curb this menace, as people refuses to accept babies with congenital diseases and it sends an implicit m~ssage of rejection of people with disabilities?

[13]. That the aforesaid relief has been prayed for under Articles 32 read with Articles 14 and 21 of the Constitution of India before this Hon'ble Court as the insurance companies and Government of India have not taken any effective steps to provide for good health of mother and baby and they can be

discharged in a sound state of health from the hospital.[14]. The petitioner has not filed any other similar writ Petitioner before this Hon'ble Court or before the Hon'ble High Court for the relief sought herein.

PRAYER

It is, therefore, most respectfully prayed that this Hon'ble Court may kindly be pleased to:-(A) ISSUE a Writ of mandamus to Government to ensure universal health insurance policies for medical and surgical diseases for fetuses, newborns and children during pregnancy and after delivery.10

(B) ISSUE a Writ of mandamus to the Union of India to make a national program for the management of birth defects to ensure adequate facilities available in all districts and medical colleges for routine fetal screening during pregnancy for congenital anomalies.(C) PASS such other order or orders as this Hon'ble Court may deem fit and proper in the facts and circumstances of the present case;

AND FOR THIS ACT OF KINDNESS THE PETITIONER

SHALL EVER PRAY AS DUTY-BOUND

Drawn and Filed by: DR. SANJAY KULSHRESTHA

MBBS,MCh,FIAPS

Sr Consultant Pediatric Surgeon

Petitioner-in-Person

,

DATE : 05.07.2014 PLACE: New Delhi

FILED ON: .05.07.2014