Explain what the "innovation" is about, e.g., is it the idea and/or the model you use to accomplish the idea, or your understanding of the target population, etc.?
Thalassemia is the world’s most common genetic deadly blood disorder. 1.5% of the world population is a carrier.
It affects about 500,000 children worldwide; it is prevalent in emerging countries like South-East Asia and the Middle-East. Every year more than 100,000 thalassemia babies are born worldwide, and most of them die young.
The children for all their life need regular blood transfusions every month and daily drugs. The average survival age is 15 years. The only permanent cure available is Bone Marrow Transplant (BMT), invented in the 1980's by Prof. Guido Lucarelli. BMT costs are mostly related to the personnel. In India, where the personnel cost is definitively lower, the total BMT cost is about $25-30,000 which is 15% compared to western countries. Such a reduced price, however, is largely unaffordable by the vast majority of the population of low income countries who live with less than $700/year.
Only a few thalassemia families (and even doctors) are aware that a cure is available.
Cure Thalassemia is a financially self-sustainable Social Business (as defined by the Nobel Prize Yunus) whose goal is to cure as many thalassemia children as possible, who can’t afford the cost of the cure, through cross-subsidization business model. In fact, since thalassemia is a genetic blood disorder, rich people are affected just as poor people, so it is possible every 4 paying patients to give 1 BMT almost for free. Such a model has been already successfully proved in the region for cataract by Aravind Eye Care and at Grameen Eye Care Hospital by Nobel Prize Yunus.
Describe how your innovation model is distinct from any other organization in your field?
In South-East Asia there are private hospitals doing BMT, but they can give the cure only to the patients who can afford to pay the full price. There are also some charities and NGOs financially supporting the cost of a BMT, but they must rely on donor's money to be able to cover all the costs. Cure Thalassemia is different because we can give the cure for free to some patients (thanks to the cross-subsidization business model), without relying on donors' money, so that it is financially self-sustainable and scalable.
What type of operating environment and internal organizational factors make your innovation successful?
Guido Lucarelli is the worldwide authority in BMT for Thalassemia and our scientific advisor. Director of the Transplant Program of IME’ has a long history of clinical-scientific experience in the field of BMT He has performed more than 50% of al BMT done in the world. He has published more than 250 scientific papers on this topic.
He is author of the chapter on BMT for thalassemia in the book “Bone marrow transplantation” of the Nobel Prize Thomas.
Pietro Sodani,co-founder & Scientific coordinator,works with Prof. Lucarelli since 13 years,and he has done 400 BMT for thalassemia. He is the inventor of BMT from haploidentical mother to child.
We collaborate with Devi Shetty, founder of the Narayana Hrudayalaya Hospital, the world’s largest heart hospital for children.
How do you make sure you constantly innovate in light of (potential) external challenges, or your growth plan?
The Internet has significantly changed the way people look for reliable information about health-care and possible cure for their health problems; we constantly innovate using every new Internet media and tool (including social media) that is useful to get in touch via inbound marketing all over the world with potential paying patients and their families.
Furthermore, the 2 most famous scientist for the cure of thalassemia are our scientific coordinator and our scientific advisor, so that we are always up to date to the last innovations in the field.