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Parents of boy with rare disease to meet Harsh Vardhan
Wednesday June 18, 2014 3:48 PM, IANS

The parents of 12-year-old Arian Chowdhury, who suffers from a rare genetic disease, plan to meet union Health Minister Harsh Vardhan to demand treatment in India at a subsidised rate.

It has been eight years since Arian was first diagnosed with the disease - Hunter Syndrome - that affects one person in 150,000 worldwide and has no cure.

Arian's family will also submit a petition with over one lakh signatures from supporters across the world to get enzyme treatment to India.

Besides palliative care, enzyme replacement therapy (ERT) through intravenous injections of the deficient enzyme - implicated in Hunter syndrome - is the only form of treatment for this disease. The enzymes are manufactured by an American company.

For the Chowdhury family, based in West Bengal's Howrah district, time and money are of the essence.

The longer they wait for the enzyme injections, the disease will progress to a stage where it can't be arrested further.

"The treatment costs Rs.2 crore (Rs.20 million/$323,000) per year in the US. It might be over Rs.1 crore per year in India if the injections are introduced here.

"If the health ministry could take some steps to make the treatment available at a subsidised cost here, Arian can see his next birthday. We are seeking an appointment to meet Harsh Vardhan next week," Arian's father Sib Sankar Chowdhury told IANS.

Chowdhury is employed in a private firm here and said donations have helped to keep Arian alive so far.

Medically known as Mucopolysaccharidosis type II (MPS II), Hunter Syndrome primarily affects males and constitutes one of the several related lysosomal storage diseases (LSDs).

Arian's parents are members of the Lysosomal Storage Disorders Support Society (LSDSS) headquartered in New Delhi.

Death usually occurs when the patient is in the 20s, although some patients have survived till the fifth or sixth decade of their lives.

Arian completed 12 years February 24.

His father has become a beacon of hope for other families who have children afflicted with such genetic disorders but refuse to make the disease public due to societal concerns.

"There are many who fear their children will be ostracised by society... They fear that society will shun them once they know it can be passed on. But we have been vocal about Arian and we hope others will join in our movement," Chowdhury said.

For the other children battling rare diseases in India, Chowdhury hopes for the inclusion of rare diseases in the country's health policy.


 


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