Dear Bill,
I respond to your post about a world-changing idea. I'm no longer a student, but I have a strong passion and I'm deeply studying Thalassemia, the most spread mortal genetic disease in the world.
1.5% of the population – 100 million people – is carrier of thalassemia minor, mainly in Southeast Asia, southern China and Arabian Peninsula. In western countries it has almost disappeared, mainly for prenatal screening and therapeutic abortion.
Thalassemia carriers are resistant to malaria, and they are concentrated where malaria is endemic.
To survive, a thalassemia major patient must receive blood transfusions every 3 weeks during his life, and he also needs daily drugs and regular iron chelation therapy, to remove the excess of iron caused by the transfusions. At least 15 million blood units are required per year, and it is a relevant cost for the health-care system, and an issue for the children and their families.
In low-income countries, the great majority of children dies within the first year of age, because they can't afford the transfusions, and the ones who survive, they barely reach 15 years of age.
In Italy in the 1980's, Prof. Guido Lucarelli invented the only cure available: Bone Marrow Transplantation (BMT) from compatible donor; he has done more than 50% of all the BMTs in the world. In low risk young patients, the thalassemia free survival rate is 89%, with no more need of blood transfusions, drugs and iron chelation. In Asia the cost of a BMT is about $25,000.
But only 25% of patients have a matching donor, and Dr. Pietro Sodani, who works with Prof. Lucarelli since 10 years, has invented the BMT from mismatched donor (published in 2010 on Blood Journal), using the mother as donor, and giving new hope to the 75% of patients without a matching donor.
Since thalassemia is mainly spread in developing countries and it almost affects poor people, the cost of the cure is too high for most of them.
The changing idea that I propose is to keep the research going, with your creativity and vision, to significantly lower the cost of BMT, doing it at home rather than in an hospital (something similar has been done in Mexico with encouraging results).
Thalassemia is a time bomb, WHO forecasts that it will double within 20 years, and it is also a huge financial burden for developing countries for the cost of blood transfusions and drugs. There is little research going on, because in western countries there is a small number of patients (about 1,000 in the USA).
We need to have BMT accessible to everybody, at a low price, with and without a matching donor.
To know more, you can read the Cure Thalassemia site (Prof. Lucarelli and Dr. Sodani are both involved) and the FAQ on BMT.
Thanks for your valuable time.
With Regards and congrats for your philanthropic work,
Eugenio La Mesa
Co-founder and Chairman
Cure Thalassemia
"Live without Thalassemia major"
P.S.
I work in the software field, as a Microsoft partner, with Francesco Balena and Giuseppe Dimauro, the 2 only Italian Microsoft MSDN Regional Director (both .NET worldwide experts and Microsoft press authors). I won the Microsoft Italy award for the most innovative Internet application. More than 130 Microsoft employees in many countries know me personally, you can check on my LinkedIn profile.
