Start gene therapy for thalassemic cure in India immediately
This petition had 27,075 supporters
Government of India. Get Gene Therapy for Thalassemia and save the life of 35 lakh patients
I have seen my friends die while I struggle to stay alive.
I need blood transfusions every 2 weeks. I take injections & medication every day. My name is Gagandeep Singh Chandok known by my friends as well as love ones as Sunny Chandok and this has been my life for the past 32 years.
I am a Thalassemia patient and my 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.
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.
This is why I have 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.
There are many like me in India. Almost 35 lakh thalassemia patients taking blood transfusions and injections. Of this number, many are below poverty line and barely able to afford treatment costs which can go up between 50000 to INR 1 Lakh per month.
Apart from this we people with thalassemia face discrimination in education and employment. There is also social stigma as there is fear in society about our condition. This affects our family as our loved ones are often rejected in society and marriage. We live in secrecy without revealing our condition.
There are clinical trials for Thalassemia Gene Therapy going on around the developed world. Yet, the clinical trials in India were stopped even though we have the highest number of Thalassemia patients in South Asia.
We need the Indian council of medical research , Ministry of health and family welfare and Department of biotechnology to come up with a national thalassemia plan or national thalassemia policy and expedite gene therapy cure for Thalassemia. We need them to work on prevention, care and cure strategies. They need to provide financial investment for gene therapy for all.
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.
Please sign my petition so that Thalassemia patients in India get a chance to live!
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