For at least one day every month, many Iraqis who suffer from the condition, thalassemia, will need a blood transfusion. In the meantime they wait patiently, and often without a great deal of hope, to find a suitable bone marrow donor. Those operations can cost hundreds of thousands of dollars and are out of reach for many locals.
By Nawzat Shamdeen
Thalassemia is a life threatening, genetic condition that means the sufferer cannot produce enough healthy red blood cells. This is due to a missing gene. If left untreated the condition, which is not always immediately detectable, can lead to all kinds of health issues and often death.
This genetic condition is more prevalent in countries where family members who both carry the gene marry. In Iraq, it has required campaigns to encourage genetic testing before such relationships are consummated.
According to the Thalassemia Centre in the northern province of Ninawa, there are currently around 1,500 patients. But, perhaps more significantly, around 5 percent of the province’s population – that is about 200,000 people – carry the genes for the disease.
Should those carriers of the gene marry, they have a 25 percent chance of having a child with the condition. If a person with the gene marries a person without the gene, then most likely their offspring will also have the gene but will not suffer the debilitating outcomes of thalassemia.
In an area where marriage within tribes is often arranged, you often see multiple cases of thalassemia in the same extended family.
“A prenuptial examination is the only preventive solution,” doctors at the Thalassemia Centre, based in a hospital in the provincial capital, Mosul, state.
The Thalassemia Centre is part of the Ibn Al Atheer Hospital and has been since 1997. It provides sufferers with free treatments. But this is not always easy: The lack of funding means the Centre can only offer limited services and patients, many of whose families are lower-income, must depend on donations for their monthly blood transfusions.
The local blood bank doesn’t always have enough blood and many patients have to find their own donors. “There are often campaigns calling for donations but these are not supported in any way by the authorities,” says the director of the city’s biggest blood bank, Mohammed Dawj Khalid. “Often the donors are rewarded by symbolic gifts, like a bottle of juice.”
This process is not always safe for thalassemia patients as the possibility remains that they will be infected with other diseases like hepatitis, during the donor process, because the equipment for transfusions and testing at the hospitals remains rudimentary.
The only hope for a longer term cure for local thalassemia patients is to find matching bone marrow, for a transplant. But this is extremely difficult. Often such bone marrow is only found in twins. It is extremely rare to find the matching bone marrow outside a family. It’s like finding a needle in a haystack.
Even if matching bone marrow can be found, the patient still has almost insurmountable difficulties. The process of transplanting is complex and often such operations must take place overseas, in countries like Italy or India. Iraq doesn’t have the required infrastructure or expertise.
Between 2005 and 2019, the Thalassemia Centre was able to send 47 patients to Italy, thanks to agreements made between Iraqi and Italian hospitals. During that 14 year period, 45 of the patients returned healthy – only two died.
Unfortunately the operations still end up costing around US$100,000, an amount that is out of reach for most sufferers.