For Maqsood Alam, saving his 20-month-old son, Ahsan, has become a personal challenge after he lost three of his children to Gaucher disease in the past. Ahsan, born in February 2017, was diagnosed with the rare genetic disease four months after his birth, his family is now struggling to make sure that he lives.
After his diagnosis at the All India Institute of Medical Sciences (AIIMS), the child had been getting treatment for the illness at the hospital for 16 months now until recently, when he was asked to be taken away due to expensive dosage his treatment requires. The family has since written and visited the central and state health departments, including Union Health Minister JP Nadda, but it has been the same answer everywhere- there is no budget for this rare disease, said, family.
“I have already lost two sons and a daughter to the same disease. I just cannot afford to lose another child, it will be a disaster for us. I have knocked every door that I could ask for help, but it is so disheartening to know that there are no budgets for diseases which actually put a hole in one’s pocket due to expensive treatments,” said Alam, who works as an Arabic interpreter and earns anywhere between 8-10,000 rupees a month.
“The dose of the enzyme is 60 units per kg body weight, each vial contains 400 IU (International Units). With the present weight (9 kg), he needs two vials and one vial alternate fortnights by IV (Intravenous) fusion. The cost of the enzyme is INR 110688. The cost of therapy for one year is thus INR 38,74,080. To the best of our knowledge, there is only one company having a license for sale in India and cost is based on their price,” stated the letter released by AIIMS explaining the problem.
Alam now waits for a miracle as his son lies on a bed at the Delhi government’s Lok Nayak Hospital, where Ahsan was taken after AIIMS discharged him.
WHAT IS THE DISEASE
- Gaucher disease is the result of a buildup of certain fatty substances in organs, particularly spleen and liver. This causes these organs to enlarge
- The fatty substances also can build up in bone tissue, weakening the bone and increasing the risk of fractures
LINK:
https://www.dnaindia.com/delhi/report-delhi-20-month-old-refused-gaucher-treatment-due-to-treatment-cost-2678933
