Patients suffer as drug for rare genetic disorder goes out of market
Wilson’s disease can be fatal is the drugs are not administered regularly, say doctors.
Thousands of patients in different parts of the country who are suffering from Wilson’s disease are going through a harrowing time for months now as manufacturers have stopped producing the life-saving, penicillamine drug for this disorder. Production was stopped after the Centre announced a new, lower price for the drug.
Wilson’s disease is a rare genetic disorder in which copper accumulates in the brain, liver and other vital organs causing neuro-psychiatric and hepatic problems in patients. It is treated with penicillamine drug that reduces copper absorption or removes the excess copper from the body through urine.
The drug is available from different brands of mainly multinational companies based in the US. Each capsule manufactured by Indian companies costs around Rs 15 while for foreign brands it’s Rs 100 per capsule.
“The disease can be fatal if the patients are not given the drugs regularly. Around five to six persons in every one lakh people suffer from this rare disease. It can attack anyone between 10 to 70 years,” Professor Shyamol Das, the head of the neurology department of the state-run Bangur Institute of Neurology (BIN) and national president of Movement Disorder Society of India (MDSI), told HT.
“Manufacturers have stopped the production of this drug after the Centre announced a new price — lower than before — for the medicine. Patients desperately looking for penicillamine are being turned back from chemist shops but we are helpless,” said Tusher Chakraborty, former secretary of the Bengal Chemists and Druggists Association (BCDA), the largest body of around 42,000 retail and wholesale chemist shops across the state.
The crisis is so bad that around 100 Wilson’s disease patients, showing symptoms of neuro-psychiatric disorders, are hanging around BIN regularly requesting doctors to intervene and arrange for the drug.
Some senior hepatologists in the city are also looking for the drug for their patients suffering from the same disease with chronic liver problems.
“Finding no other alternative, we are advising patients to take zinc sulphate temporarily. But zinc sulphate is causing severe gastric problems among patients who are using it. Many patients at BIN are not getting the medicine for more than three months. Patients in other parts of the country are also facing the same problem,” Das said.
“Penicillamine has vanished from the market landing patients in deep trouble. Both patients and doctors, mainly neurologists and hepatologists, are looking for the medicine for the past few months. But no one in the drug industry has given us a positive clue about when the medicine will be available in the market. Senior hepatologist Dr Abhijit Chowdhury of SSKM Hospital has already requested the state drug control authorities to arrange for the medicine considering the plight of patients,” neurologist Dr Trishit Roy, a former director of BIN, said.
“I have hardly seven days’ stock. I don’t know how I can get the medicine after one week. I have already visited several large chemist shops to find out if they have the medicine but with little luck. The medicine that I am taking for the past few years has simply vanished,” said Parthapratim Saha, a 34-year-old resident of Tobin Road who suffers from Wilson’s disease.