Endless wait for patients with rare diseases

Even as the State government had allocated funds, almost a year ago, for starting a special unit for patients with rare diseases at the Indira Gandhi Institute of Child Health Hospital in the City, it is an endless wait for patients and their families as nothing has materialised so far.

The State government had allocated funds in the 2014-2015 budget. However, neither the hospital, nor the patients awaiting for it have been informed about the setting up of the unit. This apart, it was also proposed that treatment would be provided at subsidiary cost for children suffering from diseases like Haemophilia, Thalassaemia, Sickle-cell Anaemia and Primary Immuno Deficiency.

Speaking to Deccan Herald, a senior doctor from the Indira Gandhi Institute of Child Health Hospital said that even as the budgetary allocation was made for the same, the finance committee had not approved it. “The hospital has no communication on the setting up of the unit. However, it was said that it would be difficult to provide grants on a recurrent basis. Hence, there has been no approval to provide treatment,” the doctor said.

The Hospital has been seeing a number of hemophilia and sickle-cell anaemia cases. Even as treatment is made available for a few diseases at a minimal cost, not all families have the financial stability to continue with it, according to doctors.

“There is a need for a dedicated centre for testing. Besides having the unit, manpower has to be recruited. So far, there has been no communication about this,” said a source in the hospital. While, a few have been trying to make ends meet, hoping to save enough money for treatment, a few others have left it to destiny.

Maunesh, the maternal uncle of two children with MPS 2, a rare disease, expressed that the challenges involved in having the children treated were plenty. Even after the diagnosis, financial hurdles hinder children from receiving treatment.

“The children were diagnosed with the disease early in February. They are residents of Hassan and keep visiting the City for treatment. The children’s father is a driver, who is finding it extremely difficult to arrange money for their treatment. They are hoping for help of some form,” Maunesh added.

Prasanna Kumar Shirol, president, Lysosomal Storage Disorders Support Society, said that the diagnostic tests could range anywhere between Rs 1,000 and Rs five lakh. “Presently, it is in Centre for Human Genetics and Strand Life Sciences, both of which are private set-ups that offer diagnostic facilities. Not many can afford it,” he added.