Mumbai: Without his medicines, this boy with genetic disorder could die

Updated: Dec 24, 2016, 09:32 IST | Rupsa Chakraborty

D-Penicillamine, life-saving drug for genetic disorder — Wilson’s disease, wherein copper accumulation can lead to various hazards — has ceased production in India since Sep for a lack of raw materials

Akshay and Santosh Paranjape are trying to figure out alternatives
Akshay and Santosh Paranjape are trying to figure out alternatives

It’s the stuff nightmares are made of. D-Penicillamine, the life-saving drug for a genetic disorder — Wilson’s disease, wherein copper accumulation can lead to various hazards — has ceased production in India since September for a lack of raw materials. However, failure to take regular doses can lead to death.

Akshay Paranjape, a 22-year-old resident of Ratnagiri, has been undergoing treatment at the Kokilaben Ambani Hospital for the past six years. But his fight with the deadly disease has reached peak point when National Lever Foundation, which provides the medicine at Rs 2, failed to supply the medicines to patients like him.

Parents apoplectic
“Akshay wanted to be a physiotherapist, but his dreams were shattered due to Wilson’s disease. Now, he can’t even write a single line on paper and if he misses his doses, we might lose our son,” said Santosh.

He has also knocked on other doors to procure similar medicines, like one in Chennai. However, the city doctors have instructed him to avoid using it because it is without proper approvals. With no option in hand, Paranjape wrote to the PM’s office. On December 14, the ministry replied that the letter has been sent to the appropriate authority for action.

“Child Lever Foundation can arrange the medicine from other countries, but they are seeking waiver of customs, so that the meds are affordable,” said Paranjape.

Docs and pharmas say
Dr Aabha Nagral, specialist in hepatology and liver transplantation, Jaslok Hospital said, “Copper can affect liver, brain and other body parts. If the medicine is not taken, it can send a patient into coma.”

One of the manufacturers, Panacea Biotech stated, “The shortage is due to sudden disruption of supplies by qualified supplier beyond the control of the company. We continue to work closely with potential new raw material suppliers in China and India for access.”

The guide to Wilson’s
In this disease, copper accumulates in the body to a dangerous level. This affects the working of brain and nervous system. The patient gradually loses control over the limbs, eyes, ears and is unable to carry out routine activities. In the end, the disease can turn out to be fatal. It mainly affects young children.

Reach out
For emergency, patients can login to: www.cilamin.com
For update, they can message to WhatsApp group Cilamin Support on +91-9350588528
For real time communication, patients can tweet at @Cilamin250

5-year-old boy dies from snake bite in Mumbai

This website uses cookie or similar technologies, to enhance your browsing experience and provide personalised recommendations. By continuing to use our website, you agree to our Privacy Policy and Cookie Policy. OK