Thalassemia is a genetic blood disorder characterized by decreased red blood cells. The only treatment is regular blood transfusion and the only cure is bone marrow transplantation, invented in 1984 by Prof. Guido Lucarelli, which are very expensive procedures. Eugenio La Mesa is a serial entrepreneur from Rome, Italy who is keen on starting a social business to treat poor thalassemia patients in India. He spoke to YourStory about his venture which he plans to launch in Hyderabad.
How did you go from being a software entrepreneur to building a healthcare social business in South Asia?
One year and half ago I started to volunteer for a NGO in Italy called Cure2Children, one of the physicians who volunteers there, Pietro Sodani, is a good friend. Cure2Children helps children suffering from Thalassemia in Pakistan. When I was volunteering for them I read a lot of books about Social business including Md Yunus’ book ‘Creating a world without poverty’. I was very impressed with the idea of a social business which is neither a nonprofit nor a profit oriented company.
One night I sent him an email impulsively using the contact section of his website without knowing him. I told him that I read his book and agreed with him about the idea of social business and that I was volunteering for a NGO and wanted to turn that into a social business in the healthcare domain. I told him that I wanted to create a social business for the treatment of Thalassemia which is prevalent in Bangladesh. I was shocked when the following day Md Yunus replied that the idea was interesting and he would like to talk about it. In August 2009 I went to Dhaka and we signed a MoU between Grameen and Cure2Children. This incidence was quoted in the chapter 4 of Md Yunus’ book Building social business, entirely dedicated to Grameen-Cure2Children.
How to you plan to start with your social business venture?
Cure2Children is working with Grameen to set up the venture. I am also creating with Pietro Sodani a new organization called Cure Thalassemia to facilitate this social business as Cure2Children wants to remain a NGO based on charity and donations.
We will start from India. I will be in Hyderabad in October and with Chandrakant Agrawal, an Indian friend and partner, we will set up the social business. He is an entrepreneur whose granddaughter suffers from Thalassemia and she is being cured in Rome by Prof.Guido Lucarelli and Pietro Sodani.
How do you plan to run and sustain the Cure Thalassemia?
The idea is very simple. I got the inspiration from Aravind Eyecare hospital and a similar initiative run by Grameen in Bangladesh. To cure Thalassemia you need to go for bone marrow transplantation. In South Asia the procedure costs about $20-25,000 which most people cannot afford. There are about 500,000 kids in India, with 10,000 new born cases every year, and most of them do not live beyond 10 years of age. The patients have to stay at the hospital for 45 days and for six months they have to come back regularly. We will have 3 beds out of which 2 will be for paying people and using the money we make from these 2 beds we will subsidize the costs almost completely for poor thalassemia patients. We hope to find enough paying patients to keep this sustaining. It is a genetic disease which affects all sections of the society.
Are South Asian populations more susceptible to Thalassemia?
If you are just a Thalassemia carrier you have a normal life. Tennis player Pete Sampras and footballer Zinedine Zidane are thalassemia carriers. If two thalassemia carriers produce offspring the chances of the kids having thalassemia major is 25% greater. In south Asia because of higher incidence of marriages between cousins there are more cases of Thalassemia. Estimates put the number at 100,000 in Bangladesh and 500,000 in India but the number could be higher as many parents don’t even know their kids are suffering from Thalassemia . Kids with Thalassemia would need regular blood transfusion to survive and in some cases in South Asia it is not even diagnosed.
Will it be difficult to get as many paying patients?
Our business model is not to bring down the costs. You cannot save on drugs and wages, infrastructure. An Italian doctor who was the first to perform bone marrow transplantation and has supervised 1600 out of 2000 bone marrow transplantations globally will be our advisor in Hyderabad, and Pietro Sodani, whose work on Bone Marrow Transplantation from mismatch donor has recently been published on Blood, will be the chief scientist and scientific coordinator. Thus we will have one of the best teams in the world when it comes to Thalassemia. We want to encourage patients from US, Europe and other parts of Asia to make use of our relatively cheaper costs and technical expertise. In the US the treatment costs about $400,000 and in Europe about $200,000. Some people in Asia go to Europe for such a treatment and they can be potential paying patients too. We are very clear that we will not make any huge profits from the paying patients , the money will be used to subsidize the treatment of a poor child and the shareholder will not receive any dividend, following the principle of Social Business of Md Yunus
Why did you choose to start in Hyderabad, India?
With Grameen we will do this in Dhaka. I met an Indian textile entrepreneur whose grand daughter was getting treatment from Prof Lucarelli and Pietro Sodani. I explained to him the project and shared my plans of expanding to India after we have started in Bangladesh. He took an interest in this project and wanted to do something to help people suffering from thalassemia and he suggested we start from Hyderabad where he is based and that he will help us in starting and running it. Once we are financially self-sustainable we plan to move to other cities in India.
How do you plan to raise funds initially?
We are looking for people who will lend us money. We will not accept charities and want to stick to the model of social business. We plan to raise funds through our networks and through social business funds. We want to do bone marrow transplantation for free to begin with. We are hoping to raise $200,000 to 300,000. We are open to giving equity and to loans. If there are people interested in our project they can contact me at http://www.eugeniolamesaonsocialbusiness.com/eng/contact-me.html
How do you balance your time between your for profit venture and social business?
I work on many projects but my focus is on a software using which you can migrate applications from VB6 to .NET I am the CEO of another startup which is a social network for Italian wine lovers.
I spend 90% of my time in my normal business and the rest of the time in social business. In the future I might decrease the time I spend on normal business. I believe people working in social businesses must be paid at market wages, like Md Yunus says, and maybe one day I’ll spend a good slice of my time in the thalassemia venture, drawing a salary.
You have met and interacted with Md Yunus, is he your role model?
Yes Absolutely. I really like his vision. He has proved that social business is not a mere theory but works practically. I will be moderating the panel on healthcare social business in November at the Global Social Business summit.
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