New Delhi: In his appeal to the government of India, Mr Gagandeep Singh Chandok has sought its intervention in allowing the Gene Therapy for Thalassemia. “I have seen my friends die while I struggle to stay alive. I need blood transfusions every 2 weeks. I take injections and medication every day. This has been my life for the past 32 years,” said the patient suffering from the disease in his online petition on Change.org.
Gagandeep is a Thalassemia patient and his body does not produce enough red blood cells. “Because we don’t produce enough blood, we suffer through our lives. The disease affects all parts of the body including bones, muscles and other vital organs like liver and heart.Thalassemia is a chronic degenerative condition,” he goes on. “There is no known cure for thalassemia except bone marrow transplant (BMT) and most patients in India can neither afford it nor do they have relevant matches with siblings or others. BMT can be done only for children up to the age of 10 after which it is a serious risk.”
“The only proven cure available to us is “Gene Therapy”. It is a process by which some of our normal cells can be harvested and made to produce more blood cells. We were thrilled when this research was started in India. Sadly, due to a lack of incentives, willingness and support the research has come to a stand still,” says Gagandeep.
Gagandeep lists above reasons for having started this petition, urging the government and medical community to re-start this critical treatment in India. “I have seen many of my friends die before my eyes. Raj Kishore, Ali, Imran, Mona Lisa, Manjushree, Asma … Your signature on this petition, could help save me and my friends,” he mentions.
There are thousands more like him in India. Estimated 35 lakh thalassemia patients are taking blood transfusions and injections periodically. Of this number, many are below poverty line and barely able to afford treatment costs which can go up between estimated INR 50,000 to 1 lakh per month.
Apart from this, the people with thalassemia face discrimination in education and employment. There is also social stigma as there is fear in society about their condition. This affects their family as our loved ones are often rejected in society and marriage. They have to live in secrecy without revealing their condition.
Gagandeep Singh Chandok’s online petition on Change.org can be accessed here. So far he has managed more than 18,000 signatures on his petition. He is hoping to reach the policymakers and get their assurance on the issue.
A paper published online in Nature on September 16, 2010 had reported the first case where gene therapy on an 18-year-old teenager has successfully cured the disease. “Gene therapy for a form of β-thalassaemia, a genetic disorder whose sufferers require frequent blood transfusions because they cannot properly produce red blood cells, seems to have been successful in a patient who, three years after treatment, no longer requires transfusions,” it had mentioned.
However, the same hasn’t been repeated on a larger sample population due to approval issues. While there are clinical trials for ‘Thalassemia Gene Therapy’ going on around the developed world, the clinical trials in India were stopped even though we have the highest number of Thalassemia patients in South Asia.
“How many of us have to die, before this life-saving treatment is re-started? This therapy will help save our lives and help us live without worrying about injections and transfusions. We will be able to work, get married, travel and live our lives,” he asks, “Please sign my petition so that Thalassemia patients in India get a chance to live!”
