No amount is too small in the fight against thalassemia. Below, we have listed some of the ways you can help a child in Asia. Your contribution to Hemoglobal can help make the difference between life and death for a child with thalassemia in Asia.
Transportation for patients to receive expert care: cost, approximately $30
Regular follow-up for children to attend specialized thalassemia centers with blood transfusion facilities, to be reviewed by doctors and nurses knowledgeable about thalassemia, is key to better treatment. Almost everywhere in Asia, expertise in the management of thalassemia is centered in larger towns and cities. But for example, in many areas of Sri Lanka - where Hemoglobal has worked for 15 years - bus transportation for many families living far from treatment facilities is expensive, and/or often difficult to access. As a result, we have seen that a child's medical care may be compromised. A gift of Canadian $30 provides support for a parent and a child with thalassemia to travel, three times a year, to the National Thalassemia Center in Kurunegala, Sri Lanka where up-to-date facilities are available and where, over the past decade, medical personnel have become expert in the management of children with thalassemia.
Shipping of clinical samples: cost, approximately $200 per shipment
Transporting materials and blood specimens from Asia to Canada is costly. In many circumstances, optimal patient care requires advanced laboratory analyses that are unavailable in Asia, so blood and tissue specimens that are relevant to the diagnosis and treatment of children with thalassemia must be shipped internationally, often several times a year. A gift of Canadian $200 allows transport of many samples, which are frozen in storage before they are shipped in batches (to save money) to laboratories in Oxford, UK. Ensuring that these samples are analyzed is vital to the management of these children.
Non-invasive imaging of liver iron to allow precise diagnosis of iron overload: cost, $300 per "Ferriscan®"
Iron overload leads to many problems, including a shortened survival for children with thalassemia. Humans have no mechanism for eliminating excess iron. Excess iron is accumulated from transfused blood which, paradoxically, is the key to maintaining survival in thalassemia. In other words, transfusions treat the primary problem of thalassemia – that is, severe anemia -- but create a second disease: that is, iron overload. Excess iron is potentially lethal to body organs, including the liver and heart, and if not adequately treated, results in failure of these organs, and premature death. Blood tests are generally not precise in the assessment of iron overload, and reliance on them can result in "over" treatment in which body iron is driven too low, resulting in side effects; or "under" treatment in which iron remains too high, and the child remains at risk for liver and heart failure. There is only one way reliably and precisely to determine the level of iron in a child's body: assessment of the concentration of iron in the liver. A liver imaging test known as Ferriscan®, developed by Professor Tim St Pierre (School of Physics, University of Western Australia) was made available in Colombo, Sri Lanka, after years of effort by Hemoglobal and precisely, non-invasively, and accurately measures liver iron without discomfort to the child. Professor St Pierre has donated his time to help provide Ferriscans® to as many children in Sri Lanka as possible. A gift of Canadian $300 covers all expenses associated with Ferriscan® imaging for one child, and most children will require a Ferriscan® about every three years. This $300 is therefore a very important and cost-effective gift which allows doctors to precisely tailor treatment to each child, and improve the chances for long-term survival without complications. This test may save a child's life.
Laboratory testing: cost $100-$500
As described above, relatively sophisticated laboratory testing is required to screen and diagnose certain forms of thalassemia and, in particular, to monitor the effects and toxicity of treatment. A gift of Canadian $100-$1000 supports clinical evaluations which, while routinely obtained in North America and Europe (and available in private hospitals in Asia) are not paid for by most (publicly-funded) government hospitals in Asia - which means that few patients (90% of whom are treated in government hospitals) can afford these tests. These include, for example, testing to assess growth and development in young teenagers, or tests to evaluate early problems with the function of the heart, which is often affected in thalassemia. Many tests, while too costly for most families, are vitally important, as they allow doctors to understand and tailor treatment for each child. Many children struggling with poor growth and, often delayed development extending into their late teens, will benefit directly from this gift.
Flight to Sri Lanka: costs, $1,00-$2,000
Hemoglobal's life-enhancing mission begins with access to children with thalassemia. All Hemoglobal's consultants and collaborators offer all their time and medical expertise free. The costs of travel for our teams, however, has increased in recent years. The cost of an economy flight from the United Kingdom (for Dr. Weatherall's team) to Sri Lanka is approximately $1,000; that from Toronto (for Dr. Olivieri's team) is approximately $1,800. Your gift allows Hemoglobal's workers to travel to Asia frequently to share expertise and experience.
Local Salaries: costs, $2,00-$10,000
We have seen that throughout Asia, many local family members, and even patients themselves, volunteer personal time to thalassemia wards and clinics. Your gift would provide stipends for these individuals, thereby making their vital contributions sustainable over the long term. Currently, for example, Hemoglobal's coordinator in Kurunegala acts as a liaison between patients and doctors. She -- and others like her in other developing centers -- are committed to assisting patients, the large numbers of which would overwhelm many clinics in richer countries. There is an ongoing need for more such coordinators in other centers throughout Asia. Yet, while vital to the operation of these clinics, most of these individuals earn very little compared to those in developed countries. For example, our Kurunegala coordinator earns less than $7,000 per year. Assisting her are many local young people who have received training in counselling to provide advice and information to hundreds of local families. Each is paid less than $5,000 a year. Contributions of those amounts sustain their contributions, and help promote the health and life for the children treated at that center. It would be difficult to imagine a gift with greater impact.
Technical Support and support staff: variable costs
Computers to organize patient data, individuals to enter those data, faxes and phones, internet, photocopying ...these are expenses for every clinic. In Asia, because of the large numbers of patients per clinic, the location of many patients far from the clinics, and the distances existing between institutions, communication between physicians, other staff, and patients is greatly assisted by these technologies -- for which there is almost no other support provided.