Sib Sankar Chowdhury and his wife Debjani Chowdhury are worried about their 12 year old son Arian Chowdhury who is suffering from an almost incurable disease known as Mucopolysaccharidosis type II (Hunter Syndrome). Arian was diagnosed with Hunter Syndrome at the tender age of four. It is a rare genetic disorder and around 2000 people worldwide have been diagnosed with this disease. This disease slowly affects the entire body and life expectancy is drastically reduced.

The treatment for this disease is called Enzyme Replacement Therapy which will be given as Intravenous injection and needs the drug ELAPRASE which is available with only one company – Shire HGT, an American firm.

Speaking to AV, Sib Sankar Chowdhury said, “We are a middle class family and it is impossible for us to afford the treatment for my son’s disorder as it is prohibitively expensive. Approximately, 88 lakhs to 1 crore is the estimated annual expenditure for my son’s treatment.”

Arian was nearly four years old when he was diagnosed with Hunter Syndrome. At that time, there was no recognised treatment available for this disease.

Around 2006, Elaprase was approved by FDA for ERT in Hunter Syndrome patients. However, Arian’s parents have not been able to procure those medicines as it is very expensive. Sib Sankar Chowdhury has started a petition to save his son on the website www.change.org. Netizens can sign this petition and support this cause.

Elaprase can prove to be highly beneficial for Hunter Syndome patients. It has in fact been called as one of the most expensive medicines ever created. This medicine is the only hope for Arian now.

Developed by Shire Human Genetic Therapies Ltd, the medicine Elaprase (Idursulfase), was approved by the US Food and Drug Administration as an enzyme replacement treatment for Hunter syndrome. This life-saving drug is at present unavailable in India. It can be imported by seeking prior permission from Drug Controller General of India. A weekly dose of this drug will cost around 2 lakhs. Considering that the drug is to be administered on a regular basis and for a long-term, the cost is estimated to run into several lakhs, probably even running into a crore.

There is no assurance that Arian’s life can be rescued but it definitely increases his chances of survival and that’s what his parents are expecting.

What is Hunter Syndrome?

Hunter syndrome is a lysosomal storage disease caused by a deficient (or missing) enzyme. In simple words, it is a serious genetic metabolic disorder.

It interferes with the body’s ability to break down and recycle specific mucopolysaccharides, also known as glycosaminoglycans or GAG. Thus, GAG builds up in cells throughout the body and interferes with the way certain cells and organs in the body function, eventually leading to a number of serious symptoms.

Hunter syndrome is always severe, progressive, and life-limiting.
Symptoms of Hunter syndrome may not be visible immediately at birth, but start becoming noticeable after the first year of life or even later. In Arian’s case, symptoms emerged after he turned four. What started as a casual checkup for a mild bout of wheezing turned out to be a nightmare for his parents.

On a planet with 7 billion people, around 2000 people are afflicted with Hunter Syndrome. Of these approximately 500 are in the United States, 30 in Canada, 2 in New Zealand, and few others exist in various countries.

You may contact Arian’s father Sib Sankar Chowdhury on this number:
Mobile: +91 9831361116
Email: sibsankar.chowdhury@gmail.com
Mother’s name: Debjani Chowdhury
Address: 19, Dharmadas Kundu Lane, Shibpur,
Howrah – 711 102
West Bengal, India

Dance bar owners and staff are optimistic that the new government will revoke the ban on dance bars.

Even though the Supreme Court had lifted the ban on dance bars but the state government is yet to give its nod for re-opening of these bars. The state government has been planning to bring an ordinance to bring a complete ban on dance bars. Many bar girls have been rendered jobless after the government imposed a ban on dance bars in 2005. They were not rehabilitated by the government. The bar owners are now hoping that the situation changes once the new government comes into power. Many of them along with bar girls will be exercising their franchise and expect that the new government will revoke the ban.

Mumbai Dance Bar Association’s former president Manjitsingh Sethi has appealed to bar dancers to exercise their franchise but he has not mentioned about which party they should vote for. Despite the Supreme Court having struck down the ban that reeked of moral policing in July 2013, the state government is still contemplating its further stand.

A bar dancer spoke on the condition of anonymity and said, “We were adversely affected after the bars shut down eight years ago. The state government hastily took a decision to ban dance bars but it failed to provide alternate source of livelihood for bar girls which is unjustified.”

“I work in a beauty parlour to earn my livelihood. Since I earn a paltry sum as remuneration hence I find it difficult to make both ends meet. Nobody is worried about the problems faced by dance bar girls. The Supreme Court had lifted the ban on dance bars but the state government is adamant on its stand to shut the bars” said another girl.

Most of the girls stay in slums as they are unable to pay the exorbitant rent charged by housing societies. Many girls have returned to their native place while some other has joined prostitution activities to earn money. Since the BJP too has been taking a tough stance against certain issues hence many girls don’t expect that things will improve if the saffron party comes to power.

Prabha Desai, who runs an NGO to rehabilitate bar girls, said that the issue of ban on bars is being treated as a “prestige issue” in the election campaigning. But she is not hopeful on the issue from BJP either. “BJP had opposed the decriminalizing of homosexuality so we are not sure whether they would support reopening of dance bars,” says Desai, adding that the party would not like to be seen with conflicting “moral” views.

According to an estimate, in 2005 when dancing was banned, around 75,000 women were working as bar girls. More than 1.5 lakh others were dependent on dance bars for employment. There were around 2,500 bars running in the State without licence, according to the government’s submission in the court.
Bar owners seemed to be more vocal. Ganesh Rai, owner of a Chembur bar, said, “We are not in any mood to support a political party, but we now need change for our business to survive. The state government has levied maximum taxes, and despite the Supreme Court order to lift the ban on dance bars, no step has been taken. Patil is not above the SC and constitution. Change is necessary and several bar owners have collectively planned to cast their vote for the BJP.”