Friday January 19, 2018

Delhi High Court Approves Health Ministry’s Proposal Rs 100 Crore Fund for Treatment of Rare Diseases

The policy proposed the formation of an Inter-ministerial consultative committee along with a technical cum administrative committee

rare diseases
Funds of Rs 100 crore allocated for the treatment of rare diseases. Wikimedia
  • Lav Aggarwal pointed out that there does not exist any particular definition of rare diseases due to the absence of epidemiological data
  • Justice Manmohan highlighted that the corpus fund of Rs 100 crore mustn’t get lapsed
  • There is a possibility of this fund getting wasted as the cycle of financial year being might now be from January to December

New Delhi, August 22, 2017: Lav Aggarwal, the Joint Secretary of the Ministry of Health & Family Welfare, delivered a presentation in the High court of Delhi to justice Manmohan. The subject of the presentation was National Policy for Treatment of Rare Diseases and it comprised all the significant details.

He pointed out that there does not exist any particular way to define rare diseases due to the absence of epidemiological data. Aggarwal added that a requirement of calculating our estimate exists as the current estimates cannot be depended upon. Along with this, he also indicated that the need of the hour is to make a balance between the primary issues of the health of the public.

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While delivering his presentation, he said, “The biggest challenge with rare diseases is that they have mimicking symptoms of other diseases and thus, take years to get diagnosed. Moreover, there is a low pool of patients for research and hence, in the process of covering up for the cost of R&D, the treatment is expensive. Thus, strong measures need to be taken to make the diagnosis and treatment process easier.“ He added that considering aforesaid, the treatment of these rare genetic illnesses requires funds of about Rs 100 crore to initiate with as proposed by the policy. As mentioned in the National Health Mission, the governments at the state level must take a step forward to request the funds needed along with the names of diseases which can be provided by the central government from the corpus of Rs 100 crore.

Justice Manmohan highlighted that the corpus fund of Rs 100 crore mustn’t get lapsed. There is a possibility of this fund getting wasted as the cycle of the financial year might now be starting from January and ending in December.

Aggarwal recommended that in order to let the patients benefit directly, it would be a good step to keep the money handy for hospitals such as AIIMS. In contrast to Aggarwal, the Justice suggested that it will be better to allow money into a revolving fund in order to earn interest on this amount.

“The Honourable Court is very sensitive to the immediate implementation and utilization of the Rs. 100 crore corpus. It also rightly mentioned that the fund may be allocated and transferred to AIIMS and immediate steps need to be taken by Health Ministry to form medical expert committees of physicians at central and state levels. The states should screen and recommend patients based on standard formatted parameters and severity of the disease. “ said Manjit Singh (President, Lysosomal Storage Disorders Society). He said that the allocation of Rs. 100 crore needs to be revised and carried forward in the coming financial year as this fund is less to provide treatment to all the patients at present diagnosed with a rare disease.

The policy proposed the formation of an Inter-ministerial consultative committee along with a technical cum administrative committee. The former committee would be given the task of coordinating the initiatives undertaken by various departments and ministries. The task of the technical committee would be to manage and release the corpus funds as well as to develop technical requirements to identify and treat rare diseases. It will be set up at both the state and national levels. The committees will be formed and set up before the coming three weeks, i.e, last week of August.

Justice Manmohan, while appreciating the efforts taken by the Ministry commented, “The presentation has been very helpful in understanding the concept of rare diseases. However, some urgent orders are required to make the National Policy functional at the ground level. The two committees need to be appointed within a period of three weeks. The Ministry is directed to file a status report on or before November 30.”

Jurist Advocate Ashok Agarwal has been battling for the patients of rare disease and in his statement, he said, “The National policy is a landmark step. However, the policy can only be tested on the basis of the actual number of patients getting treatment. The patients should not start applying to the Delhi government for treatment and these applications should start getting processed.”

-prepared by Harsimran Kaur of NewsGram. Twitter @Hkaur1025

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What Gives Husbands The Licence to Rape? Decoding Marital Rape in the Indian Legal Scenario

Can there be two different definitions of rape? Can there be a differentiation between the rape of a married woman and the rape of an unmarried woman?

Marital rape
While most of the developed world has penalized marital rape, surprisingly it is yet to be categorized as an offence in India. Pixabay
  • Cases of sexual violence, including rape, fall within the larger realm of domestic violence
  • Marital rape is yet to be categorized as a criminal offence in India
  • According to the central government, criminalizing marital rape “may destabilize the institution of marriage”

New Delhi, September 2, 2017 : Baby works as a domestic help; she says she cannot recall her age when her parents married her off to a man who was much older to her; a man she barely knew. She didn’t anticipate her husband would demand to have intercourse on their wedding night. She was still young and not ready, but that didn’t stop him. Baby was raped by her husband on her wedding night. But marital rape means nothing to her.

Sunita irons clothes for a living. She says has been married for more years than she can remember. The duo has four kids together, but that doesn’t stop her husband from raising a hand or two on her, every once in a while. Every night, her husband would get drunk, hit her and forcefully demand to have sex, paying no heed to her resistance. Sunita has three daughters, and a son, and the husband still wants to have progenies. “I told my mother that this man has raped me multiple times. She protested, arguing that he is ‘your husband’ after all,” she said.

But did she never decide to approach the authorities?

To this, Sunita promptly replied, “I once had a sore eye after he (the husband) hit me with his shoe when I refused to have sex. I went to the local hospital and then the police. I narrated the entire scene; they were very considerate, offered me water and then asked me to go home and ‘adjust’.”

Sunita is unaware of a term called ‘marital rape’.

This is the reality of a huge part of the society in real India.

Like Baby and Sunita, women who suffer such indignities are often asked to “adjust” with perpetrators of violence because of a deep –embedded fear of what the society would say. This notion of an ‘ideal woman’ impedes women to object to illicit treatment meted out by their ‘better halves’.

The debate around the issue has become ripe once again with the Central Government stating that what “may appear to be marital rape” to a wife “may not appear so to others”. In an affidavit to the Delhi High Court, the central government took a stand against criminalizing marital rape saying that it “may destabilize the institution of marriage” and also become easy tool for harass the husbands and the in-laws.

Rape v/s Marital Rape

Rape is defined in Section 375 of the Indian Penal Code, but with an irregularity: “Sexual intercourse or sexual acts by a man with his own wife, the wife not being under fifteen years of age, is not rape.”

While rape is addressed as perforation without a woman’s accord in its main clause, the only remedy to forced intercourse provided to ‘married’ woman is specified under Section 498-A of the IPC and the civil provisions of the Protection of Women from Domestiic Violence Act.

Following the horrific 2012 Nirbhaya rape case that brought the entire world to a standstill, the Indian media has given paramount coverage to instances of rape across the country. But even after 5 years of the gut-wrenching incident, there seems no end to this crime.

ALSO READ The Hardships of Sexuality: Marital rape, violence and humiliation

Cases of sexual violence, including rape, fall within the larger realm of domestic violence. However, rape by husbands within holy matrimony continues to remain an obscure subject in India and the exact number of cases is hard to gauge.

According to a 2015 report by National Crime Record Bureau (NCRB) tracing the proximity of offenders to the victims of sexual violence, it was revealed that in 95 per cent of all rapes, the offenders were familiar to the survivors. These, presumably include acquaintances, friends, relatives and colleagues.

And what about rape committed by husbands?

These cases continue to be an under-reported crime in India. This can be attributed to two major reasons,

  • Because of the stigma associated with it
  • Because of the presence of a defunct justice system

Furthermore, more often than not, these cases go missing because of several additional (and unnecessary) barriers stemming from a combination of familial and/or social power structures, shame and dependency.

Marital Rape In India

While most of the developed world has penalized marital rape, surprisingly it is yet to be categorized as an offence in India.

A United Nations’ report titled ‘Why do some men use violence against women and how can we prevent it?’ published in 2013 disclosed that nearly a quarter of 10,000 men  in Asia-Pacific region, including India, admitted to have indulged in the rape of a female partner. The report traced their rationale to a deep-embedded belief that they are entitled to sex despite the consent of their partners.

The study also revealed that the majority of these instances were not reported and the perpetrators faced no legal consequences.

In 2014, United Nations Population Fund (UNFPA), in association with International Centre for Research on Women (ICRW) brought out a report titled ‘Masculinity, Intimate Partner Violence and Son Preference in India’. Among other things, the report analyzed the average Indian male’s understanding and interpretation of the idea of ‘masculinity’ and how that molds their interactions with women.

Not surprisingly, the study revealed that a typical man in the Indian society associated the attributes ‘tough’, and ‘controlling’ with masculinity.

Segments of the present day Indian society continue to look at men as tough forces, who can (must) freely exercise their privilege to establish rule in personal relationships and above all, continue to control women.

Additionally, the study also revealed that 60 per cent of the Indian men disclosed the use of physical violence to establish authority.

In India, stiff patriarchal norms continue to tilt the gender balance firmly in the favor of men, as a result of which, women are forced to internalize male dominance in their lives.

Marital Rape in India : A Legal Perspective

Section 375 essentially distinguishes between two categories of women

  • Married women
  • Unmarried women

Much to the Indian society’s disappointment, the Indian legal system denies protection from rape to the married woman. This creates discrimination as the women belonging to one section are denied justice merely by virtue of being married.

But can there be two different definitions of rape? Can there be a differentiation between the rape of a married woman and the rape of an unmarried woman? Is it justified to discriminate a woman just because she is married to the man who has raped her?

The Debate Around Marital Rape In India

Despite the piquant situation, the issue raised furor when Minister of State for Home, Haribhai Parathibhai Chaudhary told the Parliament that the question of criminalizing marital rape in India has no relevance “as marriage is treated as sacred here.”

Does marriage being a sacrament provide one with the legal right to rape a woman?

South Asia director at Human Rights Watch Meenakshi Ganguly had retaliated saying that it is particularly concerning when a government that claims to secure the safety of women inside and outside national territory shamelessly turn to justify a crime in the name of culture and tradition.

Group director of social and economic development at the International Centre for Research on Women (ICRW) Priya Nanda asserted in an interview with a leading portal that “the reason men don’t want to criminalize marital rape is because they don’t want to give a woman the power to say no.”

In 2013, a three-member commission headed by Justice J.S. Verma suggested remedial measures to combat sexual violence in India, following the 2012 Nirbhaya rape case. One of its recommendations was the criminalization of marital rape.

ALSO READ Reasons Why Marital Rape Should Be Recognised as a Criminal Offence

The recommendation was ignored by the government as a large amount of people questioned its efficiency saying if made a crime,

  • It might be misused by people
  • It will be difficult to prove
  • It might break up marriages

But, how fair is it to not have a law against marital rape, only because of the reason that it is ‘difficult to prove’?

In a broader understanding, it needs to be understood that the criminalization of marital rape must not be viewed as a step against men or the institution of matrimony, but as an attempt to demolish the patriarchal system that continues to clutch the Indian society.


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