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Macedonia- CML patients do not have access to imatinib

Please read this message from our fellow CML patients in Macedonia. I and other advocates throughout Europe and beyond, have written to the Prime Minister and Health Minister of Macedonia, as Pepo Levi (a fellow patient advocate) requested.

The Macedonian group have made a video about the plight of CML patients in their country- please watch it on the video/webcast page. It has a moving a powerful message. Read Pepo's message below

Sandy

 'Thank you very much for your e-mails sent to the Prime Minister of Macedonia M-r Nikola Gruevski kabinetski@primeminister.gov.mk and Minister of Health M-r Bujar Osmanibujar.osmani@zdravstvo.gov.mk, as sign of support for  all CML patients in Republic of Macedonia.
As you already know, my dear friends, Macedonia is the only country on the Balkans, and also in Europe, where ``Glivec`` is not reimbursed.

From cca 60 CML patients, in Macedonia only 15 patients are privileged to take ``Glivec``, while the others are treated with old drugs such as Interferon or more frightening – Hydroxy urea.

   Our Association for support of CML patients in Macedonia, in our campaign for ``Glivec`` access to all CML patients, organized a lot of press conferences, TV debates and TV broadcasts (shows) by now. The last one you can watch on YouTube at following link www.youtube.com/watch?v=40M8oHKKC9M.  To get translation in English, press the button ``cc``.' 

In the last month, I had 3 meetings with the Minister of Health, but unfortunately there are no specific results and I still do not know when ``Glivec`` will be reimbursed by Health Insurance Fund of Macedonia.

In that purpose, I sent a letter to the Prime Minister of Macedonia to give additional money purposefully for ``Glivec`` by the Government of Macedonia.
Now I am expecting the answer from the Cabinet of the Prime Minister and that`s why your help is so precious to us, which consists of letters from different countries with support of Macedonian CML patients.
Also, I am very glad for the initiative 22/9 to be announced/proclaimed as ``International day of CML awareness``. I think it is wonderful idea!
 If ``Glivec`` is not reimbursed in Macedonia by 22.9.2011, I will invite you all together to celebrate this day in Skopje, with plenty of organized lectures and meetings.
But I honestly and strongly believe that the problem will be solved by then.
Warm greetings to all of you and I am sincerely looking forward to our meeting in Amsterdam,
Pepo Levi

Having watched the video I'm left wondering when Glivec is going generic.  I thought 10 years was the time after which pharmaceutical companies lost their patent and generics would start to appear. Surely this would help nations (and individuals) with funding?  I asked my research nurses at my last hospital appointment a couple of weeks ago but they didn't know.

regards

Chrissie

imatinib is protected until June 2016 in the UK and similar dates in most of Europe.  Not sure about Macedonia.

imatinib patent expires in 2015. we are hoping the the letter sent from the CML advocate community will have an effect and shame the Macedonian ( and Kosovan) govnts. into reimbursing this drug for their citizens. 

Sandy

The protection varies around the world based on patent and patent term extension laws varies because those laws are not identical: the US patent expires in 2015. In the UK the patent is extended to June 2016 (and probably most if not all EU Member States). In short though there is a fair bit of time to go before generics will be available in the EU. 

Hi Richard,

thanks for this clarification on the patent timing. I suppose it would make sense as Europe was slightly behind in getting the licence for imatinib. But by the time we reach 2016 I think the 2nd generation drugs will be first line therapy.

Meanwhile, we go on fighting for both dasatinib and nilotinib recommendation as second line- NICE Appraisal Report and committee meeting next week( 12th)  in Manchester. I am more hopeful than last year but.... !

Best wishes,

Sandy

Thanks, Richard and Sandy.A pity!

regards,

Chrissie

Dear friends,

27th of April 2011 is BIG day for CML patients in Macedonia !

On this day the Steering Committee of Health Insurance Fund of Macedonia brought a Decision that Imatinib will be reimbursed (costs for all CML patients to be covered by HIF).

In practice that will mean that all CML patients from September 2011 will have the right to be treated with Glivec.

We will see how this Decision will be realized, but one is sure – our campaign was very strong and efficient, and YOUR support very precious. All that gave positive results.

I hope that our friends from Kosovo will successfully achieve same result.

We will have more intensive activities starting from tomorrow - meetings with Health Authorities from HIF, MoH and Hematology Clinic; in purpose this Decision to be finished according to law in Macedonia.

Our activities will not stop here; we have a lot of work to do. Now it is time for Tasigna and support to CML patients.

We got the battle for Glivec, but we want to win the war against CML ....

Once again, thank you for your kind support.

Sincerely Yours,
Pepo Levi