Challenges for Kosovar patients with MDS and related diseases

There are numerous challenges for patients in Kosovo suffering from MDS and similar conditions. These include the following:

Symptoms and diagnosis

  • MDS often goes under-recognized for many years, as the symptoms may be difficult to spot. In this time the disease may progress significantly. It is often in a routine blood test that patients discover that they may have MDS or another related disorder.

Solution: If you are feeling more tired then usual, have unexpected bleeding and frequent bruising then you should seek medical advice. Be sure to tell your doctor that you want a blood test. If any of your blood cells show abnormal changes (higher or lower then expected) you should consider doing a biopsy and cytogenetic testing to confirm whether you have any sort of blood-related condition.

  • Confirming MDS may be difficult. Biopsy testing can be completed in Kosovo (Nucleus Laboratory, Prishtine) however cytogenetic testing is not yet available. In order to receive the most accurate diagnosis, both tests should be done.

Solution: Cytogenetic testing can be done outside Kosovo – among others The Army Hospital in Belgrade, Serbia can complete such testing.

Drug and treatment challenges

  • Patients who require Azacitidine need to source the drugs themselves, as the company that produces Azacitidine, does not have a license for distribution in Kosovo. This means that it is not available in the general hospital in Prishtina and MDS patients must either purchase the drugs directly from a private pharmacy in Kosovo or find alternative ways of obtaining it. If purchased through a pharmacy in Kosovo it can be very expensive (over 3000 euros per cycle). At least six cycles of Azacitidine are recommended before completing another biopsy which can make paying for the drugs very challenging.

Solution: Azacitidine can be purchased independently by the patient in Turkey at a much lower price at just over 1000 euros per cycle. There are several independent pharmacies in Istanbul that sell the drug.

  • How do I know that I am using Azacitidine as manufactured by Celgene? There are several generics of Azacitidine which are sold in Kosovo and neighboring countries. These drugs may have slightly different efficacies when compared to Azacitidine.

Solution: When buying Azacitidine make sure to check where check who manufactures the drug. To ensure that you are receiving the fully licensed compound then it is best to use Azacitidine that has been manufactured by a licensed company such as Celgene.

  • Stem cell transplants are not available in Kosovo. If a patient is suitable for a transplant then they need to find alternative locations to complete this procedure.

Solution: There are countries where this procedure can be completed privately including Turkey. A transplant however in Turkey will cost over 100,000 euros, therefore, finding the funds to complete this procedure are very challenging.