Shortage of drugs to treat Wilson’s disease, a rare inherited disorder, has jeopardised the lives of many patients across the country.
Wilson’s disease causes too much copper to accumulate in liver, brain and other vital organs. Pune hospitals have about 250 patients, in the age bracket of 7 to 40 years.
Limited stock of the lone life-saving drug, D-Penicillamine, is available in the market, but it has an expiry of August 2016. The incidence of Wilson’s disease in India is one in 30,00050,000 population. Experts say that new patients would be endangered if new stock does not reach markets soon.
Experts have urged government authorities to initiate steps to ensure its availability as no other alternative is available.
All Wilson’s disease patients have to take either D-Penicillamine, Trientine or Zinc through their life as these are used to remove copper from the body . Trientine is unavailable in India. It is prohibitively expensive if procured from abroad as a month’s treatment may cost anything between Rs 25,000 to Rs 30,000 as against D-Penicillamine, which costs Rs 1,500 a month.
“We have spoken with the manufacturers and tried to impress on them the hardships patients are going through due to the shortage for the last two to three months,” consultant paediatric gastroenterologist As hish Bavdekar of KEM hospital in Rasta Peth said.
“Every new patient of Wilson’s disease needs D-Penicillamine initially to remove excess copper. After taking it for a duration, they can be shifted to Zinc medicines as Zinc prevents reaccumulation of copper in the body,” Bavdekar said.
Consultant paediatric gastroenterologist Dr.Vishnu Biradar of Deenanath Mangeshkar Hospital said that without the medicine, patients would develop liver cirrhosis, and the only solution will be liver transplant. Doctors said that in Maharashtra, the drug is only available in cities like Nagpur and Nashik.
Gastroenterologist Aabha Nagral, founding trustee of Mumbai-based Children’s Liver Foundation, said, “I have more than 100 patients in Mumbai. The drug went out of stock after prices were slashed by the government. Authorities should take steps to ensure the drug is made available.”
Doctors in Lucknow and Jaipur also said that the drug is in limited supply in Uttar Pradesh and Rajasthan.
