Hemoglobal

What is Hemoglobal?

Hemoglobal is a fully registered charitable organization working to provide medical equipment and treatment to Sri Lankan children with thalassemia, an inherited life-threatening blood disorder. Based in Toronto Canada since November 2004, Hemoglobal is made up of a team of concerned international thalassemia health professionals including Drs. Olivieri and Weatherall.

All over Sri Lanka, including in some of the east and south where the tsunami destroyed hospitals and clinics, more than 2000 children live with thalassemia. Very few live to adulthood. Although the government supplies limited quantities of life-saving medicine, most families cannot afford the infusion pump necessary to administer this medicine. There is other vital medical equipment missing from Sri Lankan clinics that prevent effective treatment of patients with thalassemia. In Canada and other rich countries, patients with thalassemia receive effective treatment, and generally lead long and productive lives. A child with thalassemia living in an emerging country, including Sri Lanka, may die before his or her tenth birthday. The goal of Hemoglobal is to change this sad prognosis for the children of Sri Lanka.

To add to the difficulties already facing patients with thalassemia in Sri Lanka the devastating tsunami of December 2004 further imperiled their care and survival. The tsunami swept away hospitals and clinics in areas of Sri Lanka where many children with thalassemia live and the rebuilding is a challenge that requires swift action. Hemoglobal is working on local solutions in these and other areas by engaging the support of local engineers to produce infusion pumps to provide medicine for these children, and are complementing and supporting the expertise of local nurses and doctors in finding effective means to care for these children.

The Hemoglobal Story

Thalassemia has long been identified as a major health burden in Sri Lanka, but years of civil war has arrested the medical profession's ability to properly treat the condition. In the mid-nineties, a single thalassemia transfusion unit existed in the country. It was the physician in this unit who first invited Dr. Weatherall to help assess the hundreds of thalassemia patients this clinic was treating.

For nearly seven years, Drs Weatherall and Olivieri have helped Sri Lankan pediatricians diagnose and treat some of the 400+ thalassemia patients seen at the Kurunegala Teaching Hospital. The Hemoglobal team has visited thalassemia clinics from Anuradapura to Badulla, provided DNA diagnosis for more than 700 patients, and has worked to educate doctors around the country about the clinical management of thalassemia. Hemoglobal was formally registered as a charity in 2004 to provide direct aid from international donors in the form of medical supplies and equipment.

Since Dr. Weatherall's arrival to the country, he has been working to raise money to build a hospital in Kurunegala. In June 2003, The new Kurunegala Hospital Thalassemia Unit was opened. The unit hosts a laboratory for blood sample analysis, a library of materials for doctors and patients, a hall for patient meetings and education sessions, and separate floors for pediatric and adolescent patient care.

This building is an outward sign of the motivation and determination of Sri Lankan physicians to promote thalassemia care and management and the start of an effort, which we hope will continue for decades in an extension of collaboration and friendship between Canada and Sri Lanka.

Clinical care for thalassemia patients worldwide has benefited from the research program which developed in this clinic. A number of papers have been published due to joint efforts of Sri Lankan, UK, and Canadian expertise. A 5-year comprehensive analysis has been done of the natural history of E Beta thalassemia. In the past, this condition has been treated in variable ways all over the world due to lack of understanding about how it works.

Many initiatives to improve the quality of life for Sri Lankan thalassemia patients have been pursued by Drs. Olivieri and Weatherall inside and outside of the laboratory. Although the oldest thalassemia major patient in the Kurunegala clinic is only 19 years of age at this time, due to the past absence of pumps to deliver the required medicine, a program to provide pumps is now providing safe and effective chelation to a growing number of patients on the island.