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| Thalassemia
is a life-threatening, inherited blood disease affecting a
person's ability to produce hemoglobin. Thalassemia is the
most common single gene disorder in the world and is endemic
in areas of the world affected by malaria. Children with thalassemia
need monthly transfusions from the first year of life for
the rest of their lives. These blood transfusions are life
saving but, over years, result in iron accumulation in the
vital organs of the body. As a result, after age two, patients
require medicine called deferoxamine to remove transfused
iron before it causes damage to the liver and heart. A medical
pump is needed to administer this drug in controlled amounts
over a 12 hour period each day. |
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In higher income countries, children with thalassemia
grow up with access to all the treatments they need
to ensure they will grow to healthy adulthood. Through
bone marrow transplant some patients can even be cured
of thalassemia. In developing countries such as Sri
Lanka the treatment costs of medical pumps, necessary
drug amounts, and travel costs to and from the nearest
clinic are more than many families can afford. Hemoglobal
is trying to change this troubling situation for the
children of Sri Lanka -- where the decades-long civil
war, the devastating 2004 tsunami, and harsh poverty
have combined to threaten the lives and health of
children with thalassemia.
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| What kind of
medical equipment is needed to treat thalassemia? |
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| Medical infusion
pumps |
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Medical
pumps are needed to administer the drug that helps save
children's lives. The battery operated pump is usually
used over a 12 hour period each day of the patient's
life, slowly releasing the drug. For many families in
developing countries these pumps are too expensive and
they cannot get access to the life-saving drug as a
result. For other families they may be lucky enough
to own a pump, but as thalassemia is a genetic disease
there is often more than one child per family with thalassemia.
Under these circumstances children often share one pump
between two.
Average price: $200 - $350 CAD for locally made or commercial
brand pumps |
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| Hemoglobinometer |
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Hemoglobinometer is a clinical machine that measures
patient blood levels. These levels are essential for
evaluating patient progress and if they are receiving
necessary amounts of their prescribed drug. In the few
Sri Lankan clinics where hemoglobinometers have been
purchased, bloodwork can be assessed quickly and accurately.
In those clinics that do not have hemoglobinometers
patients may need to wait up to 2-3 days in the clinic
to receive their blood results. One hemoglobinometer
in each clinic can save over a thousand days in hospital
waiting time for these families and bed space for the
already overcrowded hospitals.
Average price: approx. $2,500 CAD |
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Centrifuge
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A centrifuge is used to separate plasma from the
different types of blood cells. It is an essential
medical device used in the diagnosis of thalassemia.
Average price: approx. $TBD
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Deferoxamine
is currently the most popular drug used to reduce iron
build-up in a thalassemia patient's blood and internal
organs. The key to survival in thalassemia is the prevention
of iron overload. Because the life-saving medicine is
a huge expense, it is in short supply in developing
countries, especially so in Sri Lanka's northern and
eastern provinces where hospitals are used by the army,
and children with thalassemia are a lower priority.
Sadly, the limited amounts of deferoxamine, as provided
by the health care system, are often not enough to save
a child. Families with more than one child with thalassemia
are often hardest hit by this shortage. An assured regular
supply of deferoxamine can ensure that a child will
survive. |
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Average cost for
an assured 5 year supply of deferoxamine for a child under
the age of 5: $5,000 CAD
Average cost for an assured 5 year supply of deferoxamine
for a child over the age of 5: $10,000 CAD |
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| What other treatments
are needed for patients with thalassemia ? |
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| Genetic Counselling:
Families of children with thalassemia face unique challenges.
The intensive treatment regimen, travel times to and from
home, and often a sense of guilt or shame associated with
a genetic disease cause a higher prevalence of divorce and
stress within families of children with thalassemia. Hemoglobal
has funded the salary of a counsellor/social worker in the
National Clinic in Kurunegala to address some of these challenges.
One of our goals is to place a counsellor in each large clinic
in Sri Lanka to help educate people about thalassemia and
destigmatize this disease. |
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| Cost
of an annual salary for a Social Worker/Genetic Counsellor
in Sri Lanka: approximately $800-$1000 CAD. |
