The STOP Thalassemia Project
Thalassemia major (TM) is the most common life-threatening non- communicable chronic disease of children in South Asia, Pacific Islands, and the Middle East; and a major burden for involved families and healthcare. Of the over 270,000 affected children and 60,000 new cases born yearly, most will not live beyond adolescence unless they receive proper supportive or curative care. Current barriers for these children include high treatment/cure costs and lack of accessible medical attention. If a cure could be made available, locally, affordably, and reliably, for select patients with a compatible sibling, the lives of thousands of children could be saved every year. TM is highly curable by bone marrow transplantation (BMT) at a young age. Cured children are able to go on to live healthy and productive lives comparable to those that were never born with the disorder.
Cure2Children (C2C) cures more kids with thalassemia than any other organization worldwide. The goal of our STOPThalassemia project is to assist countries in need by offering an affordable and reliable cure locally; this is accomplished by helping countries set-up cure and prevention focused BMT units. The STOPThalassemia project has already completed its pilot stage and yielded successful (published) results.
The Problem Being Addressed:
India has one of the highest thalassemia rates globally yet lacks the medical structures and personnel to support and cure children with the disease. In collaboration with Manav Sewa Sangh Prem Niketan Hospital, also called, the South East Asia Institute for Thalassemia or SEAIT, we created the first and only bone marrow transplant (BMT) unit in Rajasthan, a state with 60 million people and several thousand children with thalassemia major and other diseases curable by bone marrow transplantation.
Cure2Children’s (C2C) team of 6 volunteer doctors and 4 specialist nurses on rotation, worked “hands-on” with the local medical team for a period of six weeks, while simultaneously preparing the facility itself. In February of 2012, the local medical team conducted its first bone marrow transplantation and cured its first child. All of the center’s first transplanted children are doing well and no longer suffer from thalassemia. They are all cured.
The unit also offers screening and prevention to families with thalassemia. As of April 2015, 472 local Indian patients and their families have been registered and offered free screening and prevention. To-date 43 patients have successfully undergone or are in the process of undergoing BMT who have been identified and matched with a 100% compatible donor.
This is the first ever BMT center to open in Rajasthan and is currently undergoing a major expansion which will allow over 100 BMTs per year and introduce the use of transplantation using parental donors (halpoidentical BMT). This will permit a much greater number of children access to BMT even in the absence of a compatible sibling.
What started at Cure2Children’s bone marrow transplant unit is now self-sustainable, being acknowledged and funded by the regional government. This is a great achievement in line with the operational principles of C2C: that is to contribute to sustainable projects with the aim of providing treatment and assistance to non-affording families.
- A cure rate of 100% in low-risk thalassemia patients and a 90% overall cure rate including high-risk patients. These results are better than global averages even in well-funded high-tech hospitals.
- The first child to even be cured of thalassemia in regional of Rajasthan, India was done so by bone marrow transplantation at this Cure2Children Center.
- The regional government of Rajasthan is subsidizing 100% of all bone marrow transplant costs for children with thalassemia from low-income families.
- South East Asia Institute for Thalassemia (SEAIT)
- The regional government of Rajasthan