Hello everyone!
Andy asked me to post the condition of Thal. in Pakistan.
Here are few things about it!
First knowledge about the disease in Pakistan
Although Thalassemia was discovered quite long ago but in Pakistan it came into picture in the early 80's as before that; no one in the country knew that the disease existed and patients were misdiagnosed as anemic and put on iron supplements which made them worse. My brother (probably Thal.) died for the same reason. But thank God, things have eventually changed and the situation has improved and is still improving since the last 25-30 years.
Rate of spreading of Thalassemia
Thalassemia is spreading in the country very fast due to the fact that people prefer to marry within the family because they know each other more better than strangers. The situation in the northern tribal areas is even worse where it is mandatory to marry within the tribe! That is why there are more Thals in the northern areas compared to other parts of the country.
Awareness of the disease
Not only the people but the doctors also lack the awareness of the disease until they are confronted with it. The awareness has improved eventually and now the educated class of people don't hesitate to get the soon-to-be-married couple tested for genetic incompatibilities such Thalassemia, Hemophilia or sickle cell disease.
However the majority of the people of the country; which are middle/lower class; are not well aware of the disease and suffer the most.
Availability of treatment centers
The availability of treatment centers is restricted to the big cities of the country and patients from remote villages have to come to the nearest city for Transfusion and Desferal; and since they can't come every day to a city for Desferal, most patients don't get the required dosage and thus suffer complications due to iron overload and eventually die before reaching their teens.
There are only a handful of dedicated Thalassemia treatment centers such as the Fatimid Foundation which are currently established in Karachi, Lahore, Peshawar and Multan only. For other cities patients have to go the general hospitals where you would seldom find a doctor who knows about the disease.
Availability of blood
It is one of the biggest challenge that the patients face! Normal people are just too afraid to donate blood every now and then. They think that it might affect their own health and might fall sick.
The most common source for getting blood is the blood drives held by hospitals in colleges. Apart from them, the individual parents of patients also plea for blood donation in different colleges. Soft-hearted students or medical students that know that it will not effect their own health play a major role in the availability of blood. This also has it's own drawbacks as during the vacations and exams, students are not available for donating blood.
Proposed solution for the availability of blood
I have noticed that recently banks have made owning a car a piece of cake by car financing and as a result there is a flood of car owners in the streets. So, I suggest that you shouldn't re-new some one's driving licence unless he donates a unit of blood. I am saying this because there are hundreds of drivers re-newing their licence every day. The validity of the licence should not be more than a year so a driver has to donate blood at least once a year which is pretty safe for his own health. This should pretty much solve the blood availability issue.
Availability of Desferal
Desferal is rare and expensive in Pakistan. As a result most patients don't get the required dosage and suffer serious damage from iron overload. Furthermore patients can't afford infusion pumps and only get Desferal at their transfusion appointment.
Proposed solution of expensive treatment
Expensive treatment can be solved if big companies sponsor the expensive aspects of the treatment. For example some consumer product company can pay most of the price for Desferal making it affordable and in return they can be allowed to advertise their product with it and thus would have an increase in their customer base. I would have no problem buying their product knowing that they have paid a major portion of the price of my treatment.
Well that's all what I can think of now as it is getting quite late. I'll add if I can find something more. You can ask me any particular question regarding the issue and add your own observations as well.