Having recently written a glowing review of The Menstrual Man, here's another tale of an Indian man passionate about making a difference in his country. Vinay Shetty, or Vinay Uncle as he's known to the children he's helped, has championed the cause of children with thalassemia for 15 years as leader of the Think Foundation.
Thalassemia is an inherited genetic disease which affects the blood's ability to make haemoglobin and is usually found in the Mediterranean, West Asia and North Africa. Without treatment, children have a low life expectancy, and even those being treated have a stunted growth, looking years younger than their real age. Those with the disease must receive regular weekly blood transfusions, leading to an iron overload in their system, which in turn must be treated with expensive iron chelation medicine.
In Mumbai, there is no shortage of blood for those transfusions. Shetty, who attended the film and took questions in the Q&A was asked to name the greatest accomplishment of his foundation so far, and he pointed to that availability of blood. The next big challenge is the cost of the chelation medication, even though there is a generic version of the drug manufactured in India, and that is the focus of the foundation's fund-raising. Nevertheless, children born with thalassemia in Mumbai have a life expectancy about 15 years longer than in the rest of India.
Shetty has been working hard to get government help, and since the completion of the movie, the Indian government did announce funding for chelation therapy for those below a certain income level. That still leaves a band of people too poor to afford chelation but not poor enough to make the cut-off, but "it's a start" says Shetty. It seemed to me that focussing on getting government support for genetic screening would be important; such screening is not as emotionally appealing as helping specific children with medication and is harder to get donors to step up to funding.
Shetty also works hard at education and outreach. Tradition still reigns strongly in many Indian households, and we see one mother who believes that praying to the goddess will offer her daughter better protection than chelation therapy. Shetty works to get her on treatment and back in school.
Thalassemia Major is caused when a child inherits the thalassemia recessive gene from each of its parents. Shetty is also pushing for testing of siblings before marriage to see if they are carriers of the recessive gene to provide genetic counselling.
I looked up thalassemia after watching this movie. The disease is most common in the Mediterranean, West Asia and North Africa. Genetic counselling, early screening and detection, and subsequent treatment mean it's not a problem in the west, but it's still a much bigger issue in less developed countries like India. The prevalence of such a genetic disease raises the question of why natural selection has not led to its disappearance. The reason, not mentioned in the movie, is that carrying the thalassemia recessive gene (known there as having thalassemia minor) confers a degree of protection against malaria, which means that gene is being selected for. This is rather similar to sickle-cell anemia, which also seems to confer some resistance to malaria, and one article I read said these two diseases are related. This was all very interesting information, but did not appear in the film. I'm sure the film was stronger because of the resistance of the temptation to include that information, which would have been a distraction from the film's focus on Shetty's efforts.
The director of this film is award-winning Canadian filmmaker Nimisha Mukerji, niece of Vinay Shetty. So the film really was about her 'Vinay uncle'!