A new MDS Support Community is born in Kosovo –
by Blerina Ahmetaj-Shala
What does it mean to be an MDS Patient in Kosovo? Meet Gani Shala
Although feeling fine Gani decided to do a routine general check up, which he often does. Surprisingly his platelet counts came back very low (10,000/microliter; average in healthy humans is 150-400,000/microlitre).
From then on Gani did several blood tests revealing the same thing however there was limited information provided by clinicians about treatment options in Kosovo.
We hoped to bring him to the UK however, due to his condition, he was advised not to fly thus in order to get a reliable, full prognosis of his condition, Gani went to Belgrade where he was diagnosed with MDS RAEB-2 with 25% blasts.
How I stumbled (thankfully!) across the MDS UK Patient Support Group
Working in academia and science I was aware that there were forums or specialist websites for specific diseases on the Internet. After hearing the upsetting news about Gani’s diagnosis I decided to learn more about what MDS was and I stumbled (thankfully!) across the MDS UK Patient Support Group. I called the number on the website and was greeted by Sophie. I explained to her the situation and almost instantly I felt a sigh of relief and like a weight had been lifted of my shoulders. Sophie was extremely calm and informative – exactly what I needed at that time. She reassured me that by using her contacts in the field she would do her best to help us.
What happened after ringing MDS UK?
I became a member of MDS UK and as a member was sent a brochure, leaflets and a book which contained information about MDS from world leading clinical experts. There was also an online MDS forum that I could participate in and read about other patient perspectives. This really helped me understand more about MDS and realise that we as a family were not alone.
Also immediately after speaking to Sophie I sent her a copy of Gani’s test results and diagnosis report. Within the same day she managed to contact leading MDS experts in the UK and France to confirm whether what was advised in Kosovo was indeed the best treatment option. The experts were in agreement with the clinicians that several courses (minimum 6) of Azacitidine treatment was the best course of action.
As MDS UK had limited information about MDS in the Balkan region particularly in Kosovo, Sophie directly contacted Celgene to see who distributes Azacitidine in surrounding regions. They came back with contact details of specific clinicians in Serbia and Macedonia. We decided to go with Macedonia as it was closer. We then immediately contacted the clinician in Macedonia to see if she could help. She responded quickly and we were able to begin treatment less than a week after contacting MDS UK.
We are eternally grateful to the MDS UK Patient Support Group. With their help we were able to successfully agree a treatment plan with MDS global leaders in the field and locate a consultant in Macedonia who can carry out the treatment. On a personal note, MDS UK Patient Support Group provided me with emotional support and made sure that my family had the access to the right benefits, care and support. Overall as a result of this international combined effort, Gani is now on track to be able to manage his condition.
Gani has now completed his second course of Azacitidine treatment. He is responding well to the treatment and has had limited side-effects. His blasts have reduced from 25 to 5% and he is progressing very well.
The situation in Kosovo: Azacitidine cannot be purchased from hospitals and price is unaffordable
Azacitidine cannot be purchased directly from hospitals in Kosovo and as a citizen it is up to the patient to secure the drugs. This has been very challenging. The first two courses we were able to obtain from the hospital in Macedonia at a cost of just over 4000 euros/course. After the second course we realised that purchasing Azacitidine at that price was not going to be financially viable for us especially considering that the average salary in Kosovo is 400 euros (in order for Gani to complete the recommended 6 courses he would have had to work 5 years to pay off that money!).
The next hurdle for us is trying to get Azacitidine at an affordable price so that Gani can continue his treatment and reduce the blast count further. If successful we then plan to investigate options regarding a bone-marrow transplant.
A new Support Group is born
Using the knowledge we have obtained following Gani’s case we now hope to increase awareness of MDS in this region. We have started a patient support group in Kosovo to assist other MDS patients in that region, using the help, experience and guidelines of MDS Alliance and MDS UK.
The collaboration of many stakeholders across Europe was remarkable:
- Carers and family in UK
- UK national MDS patient group
- Macedonia haematology national patient group
- Expert clinician in UK
- Expert clinician in France
- Pharmaceutical company