Joti Jain was born in a suburb of Srinagar, a beautiful capital town of Kashmir in India. She is not a stranger to serious life challenges. Joti grew up in neighbourhoods screaming of extremism without a safety net in the very true sense of the word. Daylight kidnappings, shootings, rapes, constant threats, stone pelting was a daily feature. Everyday activities such as attending school and playing with friends was a luxury that Joti and her family could not afford. Having to flea in the cover of a dark night barefoot, with no belongings to a town barely 270 km was just another twist in her life with many more to come. Family of 8 living in a small tent with 40 degrees Celsius beaming from above and trying to find the motivation to live and to survive and to remain safe was a constant battle that Joti and her family faced every day for the next ten years of her life.
Ageing grandparents with acute and untreatable illnesses and thereafter cancers in the family made Joti support her family and fight for what was needed. Joti believes that over 400 million people who suffer from rare diseases deserve a lot more from the rest of us who are in a better or so to say a very privileged position. Every second patient diagnosed with a rare disease is a child and 3 out of 10 children do not live to see their 5th birthday.
It is not difficult to be able to feel the pain of those unfortunate parents who can do nothing but to wait. If the thought of the pain those children undergo can not keep you awake at night, then one can only imagine what will?
Every second patient diagnosed with a rare disease is a child, and 3 out of 10 children do not live to see their 5th birthday. Repurposing old drugs is not interesting for the market. Some say there is no money to be made.
How did humans come to this?
How can we ignore a drug that possesses the potential to treat a 5-year-old? Or extend the life of a sole earner of the family? Or a mother of an infant?
Joti Jain believes that unmet medical needs and treatments that are not effective and very toxic as severe issues. It is heartbreaking for patients and their families to watch their dear ones in acute pain and how their lives are lost just because repurposing is not profitable enough. A systematic, objective approach is needed to control these issues on a global scale. Joti Jain invites you all to join this worthy cause.