What national and international patient advocacy can achieve when working in cooperation

By Blerina Ahmetaj-Shala.

Imagine hearing the news – you father in law, a young, fit and seemingly healthy person has MDS. What was MDS though? I had never heard of it despite working in science myself, and living in the UK.

All diseases or illnesses are ‘inconvenient’ but this discovery really did come at a terrible time. I was 8 months pregnant at the time and my parents in law were planning to visit us in the UK, as soon as the baby was born. But we had no time to plan for future events – instead we were about to embark on a journey, which would be life changing for all those involved.

Gani-Shala

My father in law, Gani, lives in Pristina, Kosovo – a country still even 20 years after war is trying to build itself up. 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.

A diagnosis at last in Belgrade (Serbia) and finding help in the UK

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.

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.

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.

MDS UK Patient Support Group

If you or someone you know is affected by MDS, give us a call. We can do a lot to support, from putting you in touch with fellow patients to providing you access to MDS Specialists

Sophie contacted Celgene and they sent us the name of a specialists in Macedonia

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.

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.

Outstanding issues in Kosovo

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.

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. Using the knowledge that we have obtained following Gani’s case we now hope to increase awareness of MDS in this region.

UPDATE 01/06/18
Gani is now doing very well and we have started a patient support group themselves in Kosovo to assist other MDS patients in that region, using the help, experience and guidelines of MDS Alliance and MDS UK.

Who was involved?
Carers and family in UK
Patient in Kosovo
UK national MDS patient group
Macedonia haematology national patient group
Expert clinician in UK
Expert clinician in France
Pharmaceutical company
www.mds-alliance.org
www.mdspatientsupport.org.uk

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