JAIPUR: Father of a 21-month-old girl, who died of a rare genetic disorder called Gaucher disease on January 6, lives in the fear of losing his second child to the rare disease. The plight of Jamil, a father of two children, is that the treatment is available in the market, but he could not afford it, given its sky-high price.
His son’s condition is also worsening with delay in receiving treatment, as he has already been operated for spleen removal.
Jamil has no other option except running from pillar to post to get financial help for the treatment. He has taken his children to hospitals in Jaipur including JK Lon Hospital and also to Delhi’s Sir Gangaram Hospital. But, all his efforts to get treatment for his children went in vain.
An auto rickshaw driver Jamil, a resident of Churu district, narrated his ordeal while talking about his daughter who died of Gaucher disease. “She was unable to produce blood, which is why, she frequently complained of severe swelling all over the body,” said Jamil.
Jamil got married in 2009. He has a three-year-old son too. “When my son was born, he looked like any ordinary infant. But after six months, he started becoming thin. His belly started swelling. When I took him to a doctor in Churu, they failed to diagnose the problem. I took him to Jaipur where doctors diagnosed him with Gaucher disease. When he was just 12-month-old, doctors removed his spleen. Still, he has a swollen belly,” said Jamil.
Jamil was shocked when doctors told him that the treatment for his children is available but he cannot afford the cost of the treatment on his own. “Doctors told me that the cost of treatment is Rs one lakh per month per child and it will continue life-long. Even if I sell my house and whole property, I will not be able to afford the treatment,” he said.
However, doctors pointed out that there is treatment available, but it is provided with the help of donors. “There are only three children with Gaucher disease who are getting treatment at JK Lon Hospital. We provide them Enzyme Replacement Therapy with the help of donors. The treatment is quite expensive, so we need someone who can pay for the patients throughout their life,” said Dr Ashok Gupta, medical superintendent JK Lon Hospital, who is among 10 members of expert technical committee (policy group) to draft a national policy for treatment of the rare disease.
“The patient (girl who died of Gaucher disease) and her brother’s condition was quite acute and we recommended that they should be given immediate treatment. They applied to the state technical committee but nothing happened. They did not receive any feedback and in this delay, unfortunately the daughter passed away. The brother has had a spleen removal surgery and now his condition has become worse. Therefore, it is required that the government takes urgent measures so that the brother and others like him do not suffer. There are more patients who are in dire need. They may also lose their life soon if the government does not support and care for them,” said Dr Lalit Bharadia, a private hospital doctor, who provided treatment to the siblings.
https://timesofindia.indiatimes.com/city/jaipur/patients-with-rare-diseases-cant-afford-high-cost-of-treatment/articleshow/67564243.cms
