Life-saving drug for genetic disorder in short supply
Since the last one month, Noida-based businesswoman, Kriti Aggarwal, is having a hard time procuring a lifesaving drug for her husband, who suffers from Wilson ’s Disease — a genetic disorder in which copper accumulates in tissues, especially in liver and brain, and can lead to organ damage if the medicines are not taken daily for life.
Her husband was diagnosed with the condition 17 years ago, and since then he has been on Penicillamine – D. He currently takes four tablets daily.
However, a month ago, Aggarwal realised the drug was in short supply in the market. “I checked with several chemists, all of them had run out of supply. Luckily, one of the family members is a distributor, and he got me some supply. But it will not last long.”
Companies, including Panacea Biotec, Samarth Pharma and Arvind Remedies, manufacture the drug under different brand names. In May this year, the National Pharmaceutical Pricing Authority (NPPA) reduced prices of 54 indispensable medicines, including D-Penicillamine, leading to up to 55% fall in their prices.
One out of four people in every 100,000 in India suffer from Wilson’s disease.
“Cilamin 250 Capsule used for treatment of Wilson’s Disease, rheumatoid arthritis and other conditions were in short supply during the last few months due to non-availability of raw material D-Penicillamine,” said a spokesperson at Panacea Biotech.
Companies have sounded the Drug Controller General of India (DCGI) regarding the matter.
“We have received complaints about the shortage and we are working to resolve the issue immediately,” GN Singh, DCGI, told HT. “Companies are in touch with us for allowing imports of raw material in parallel to the registration process to ensure continuous access of the medicine. Other alternative sources are being also worked upon.”
According to Dr Anupam Sibal, senior liver specialist at Apollo: “If the patient is forced to stop the medicine, it may lead to organ damage in the long run.”
Samarth Pharma did not respond to HT’s requests for comments. Arvind Remedies could not be contacted.
“We spoke to some distributors. The products are out of stock from the manufacturer itself, said Dharmil Sheth, founder of epharmacy, Pharmeasy.