Life-saving drug scarce, patients suffer

Saima was only six when her older brother Afzal suddenly started complaining 

about pain in the legs and knee joints. Before his parents and local doctors could 

understand what caused it, his condition aggravated and he died. He suffered from 

Wilson's disease, an inherited disorder that causes accumulation of copper in the liver, 

brain and other body parts. This was in 1998.

Today, 18 years later, Saima is staring at a similar fate. This is because D-Penicillamine, 

the indigenously manufactured drug to remove copper from the body , is unavailable in 

the market. “Its imported version is 15-20 times costlier and difficult to get,“ said Dr 

Anupam Sibal, paediatric gastroenterologist and group medical director of Apollo 

hospital, who is treating Saima.

“Saima was diagnosed with Wilson's disease when she was 10 years old. She responded 

well to medication and got married recently . I am still trying to arrange the medicine 

for her,“ Dr Sibal added.

“The doctor has prescribed four tablets of D-Penicillamine daily , but I haven't been 

able to give her even one for the past 10 days,“ said Saima's father, Anjum Naim, an 

Okhla resident. Thousands of patients like Saima are reeling under a crisis due to a 

scarcity of the drug and some of them have even developed liver and neurological 

complications, doctors said.

Dr SK Sarin, director of Institute of Liver and Biliary Sciences (ILBS), said two 

patients suffering from Wilson's disease have already come to the hospital for transplant 

due to liver failure. “I have written to the Drug Controller General of India. They 
replied  that the government is working to solve the crisis,“ he said.

Some doctors have suggested that the government should import the drug and provide 

it to patients at subsidised rates till the crisis of the indigenous drug subsides.

Dr Sibal said they are asking patients not to consume fish, chocolates and nuts that 

contain high levels of copper.“Copper is an important mineral required for the 
development  of nerves, bones, etc. Healthy individuals excrete excess copper 
through bile. But as those suffering from Wilson's disease can't, it leads to 
liver failure and neurological complications,“he said.

If diagnosed early , Wilson's disease is treatable and many people with the disorder live

normal lives. Doctors said many patients may die if emergency measures are not taken.

Source: The Times of India