Every
week, hundreds of children suffering from blood diseases and cancer are diagnosed
and treated at the Hematology/Oncology clinic at Ain Shams University Childrens
Hospital in Cairo.
As well
as various immune blood diseases and anemias, the most common blood diseases
that many of these children are diagnosed with include sickle cell disease (an
inherited disease of red blood cells which can cause attacks of pain, damage
to vital organs, risk of serious infections and early death) and Thalassemias
(a group of inherited diseases of the blood combined with a number of different
forms of anemia. Heart failure and infection are the leading causes of death
among children with untreated Thalassemia Major).
Many children
at the clinic are also diagnosed with blood-related cancers such as acute leukemia
(cancer of the blood) and lymphoma (cancer of the lymphatic system).
In order
to survive, these patients need extensive care, sometimes including regular
blood transfusions and comprehensive care for body organ systems to detect early
damage. Besides being extremely expensive, repeated blood transfusions also
result in a buildup of iron in the body, which can damage the heart, liver and
other organs. A drug referred to as an iron chelator can help rid the body of
excess iron, preventing or delaying problems related to iron overload. This
drug is usually administered daily via a mechanical pump that pumps the drug
underneath the skin while the child is sleeping.
Whenever
possible, patients are given the option of having a bone marrow transplant.
Bone marrow transplantation has become the treatment of choice for a number
of blood diseases and malignancies. Since 1989, almost 1000 patients have been
transplanted. However, bone marrow transplants are only possible for a small
minority of patients who have a suitable bone marrow donor, and the transplant
procedure is still risky and can result in death.
Staff
at the Hematology/Oncology clinic say that the biggest problem and cause of
death amongst the children currently being treated at the clinic is liver disease.
Patients undergoing chemotherapy and blood transfusions are extremely vulnerable
to hepatitis B and C viruses, which are easily transmitted from one patient
to another, or as a result of regular blood transfusions. In patients undergoing
chemotherapy, hepatitis B is extremely aggressive, hindering the effects of
the chemotherapy and leading to liver failure within 5-10 years. In some cases
when the patient acquires hepatitis, chemotherapy needs to be stopped, causing
the cancer to return and spread.
During
the last four years alone, 5 patients have died as a result of liver failure
while undergoing chemotherapy. One 12 year old boy, who had been cured of leukemia
at the age of 6, died of aggressive liver cancer after being diagnosed with
both hepatitis B and C at age 12.
Liver
disease is also the most common cause of death among bone marrow transplant
patients, accounting for almost 50% of deaths, at least 85% occuring within
the first 100 days post-transplant.
A
very large group of children with blood diseases and infected with either Hepatitis
B or Hepatitis C are currently being treated at the at Ain Shams Universitys
Childrens Hospital under the supervision of Dr. Manal Hamdy El-Sayed (in
photo). Several of these children are undergoing bone marrow transplantation,
and Dr. El-Sayed says that staff at the clinic are reporting a lot of hepatic
complications among these patients. At least 15 children are also currently
suffering from complications of progressive liver disease.
Since
Dr. El-Sayed started prescribing a new, but extremely expensive form of antiviral
therapy to the children, Dr. El-Sayed reports that the result has been "a
remarkable improvement in those children with improved liver disease proved
by biopsy. A very large group of children infected with either hepatitis B or
C are currently being treated under my supervision with much better and promising
outcome."
Many of
the children have a good chance of halting the progression of their liver disease
and surviving, but this can only happen if they are able to cover the extremely
high costs of their treatment. Almost all of the children come from families
that are barely able to cover their daily costs of living, and have no way of
paying for their children's medical bills.
Every
patient undergoing chemotherapy requires at least LE 2000 per month, and extra
medications for supportive care might increase the cost to almost LE 10,000.
Patients with hepatitis require LE 2000, and an extra LE 1000 per month if the
patient is infected with two viruses rather than one.
For treatment
of Hepatitis B virus, an oral antiviral therapy for at least 18 months is required,
with the monthly cost of around LE 300, in addition to the bimonthly costs of
blood tests which approach LE 1000. As far as Hepatitis C treatment is concerned,
interferon and ribavirin therapy (currently the only standard therapy) cost
almost LE 2,500 per month for one year, added to the cost of blood tests on
three monthly basis (LE 1000).
Although
the Egyptian health ministry supports part of the funding required, the clinic
mainly depends on individual donations in order to be able to provide these
children with the treatment they need to survive.