Patients suffering from a rare genetic ailment, Gaucher’s disease, marched to Prime Minister Narendra Modi’s residence on Saturday afternoon demanding a national policy to provide free treatment to people suffering from such rare diseases.
Among the patients was seven-year-old Mohammed Ahmed, who has lost four of his siblings to the disease. Ahmed was the first patient to be awarded free treatment at AIIMS following a verdict from the High Court in April this year.
Initially, Ahmed received treatment for a month. However, when his family approached AIIMS for the next round of treatment, which was scheduled on July 8 and July 22, he was denied treatment.
Management at AIIMS said they had not received any funds (for the treatment) from the state government and so could not continue to treat Ahmed.
Diagnosed with Gaucher’s as an infant, Ahmed had frequent episodes of fever and swelling of his abdomen and lymph nodes. His limbs became thin, skin developed pigmentation and his weight came down to 13 kg at the age of six, his family said.
“With each passing day, Ahmed’s condition is deteriorating fast. He needs ERT (Enzyme Replacement Therapy), the only available treatment, which costs around Rs 5-6 lakh every month, for the rest of his life. I cannot think of losing my fifth child,” Ahmed’s father Sirajuddin, a rickshaw puller, said.
“More than 5,000 babies are born in India every year with this rare, life-threatening disease… Effective government intervention is imperative. The rarity of the disease or high cost should in no way act as deterrent for treatment…,” Dr I C Verma, Director, Centre for Medical Genetics at Sri Ganga Ram hospital said.
Manjit Singh, President, Lysosomal Storage Disorder Support Society (LSDSS) said, “Gaucher’s is a curable disease. The treatment which is required lifelong by patients, clearly cannot be afforded by them. All over the world, governments are providing the medicine for free at the state’s expense. As the number of patients are less in India, LSDSS appeals to the government to make the treatment available for patients and help them lead a normal life.”
Gaucher disease causes fatty deposits to build up in organs and bones. Of the 45 rare, genetic disorders known as Lysosomal Storage Disorders (LSD), Gaucher’s is the most common one. Treatment involves giving certain molecules that acts as a replacement to help break down fat molecules.