The only way I could do that was if you had to do a lot more work and then you would be done by yourself so you would be fine and then I could just go home to you if I needed you and you could just come over here or I can just go home if I need you can just let us go home if we need
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This sounds dreadful. Do you know whether ponatinib is approved for use by the Russian state medicines regulator?
In the United Kingdom, we fund our National Health Service through our taxes. The patient receives the medicines free of charge. The annual price of ponatinib for National Health Service is about US Dollars 80,000 for each patient.
I have heard that drug companies have schemes to provide drugs for patients living in counties where funding is not affordable. Perhaps, another board contributor may be able to assist.
Yes, there is one awkward mutation that would probably require the use of ponatinib. The mutation name, which is a set of numbers and letters, may not automatically translate into Russian. From your posting, I understand that your hospital has a restricted budget and is saving expense by reallocating budget from expensive patients to others. I presume that you are not receiving drugs to cover you for 365 days a year but instead, you are receiving drugs periodically. It may be by luck that the periodic supplies are sufficient to keep your leukaemia in a stable state. Even in the UK, a chronic myeloid leukaemia ponatinib patient is expensive with the cost of treatment being five times the state minimum wage or ten times the state old-age pension. I feel very sorry that your drugs are rationed.
Hi and welcome,
It might be more helpful for you to contact one or both of the following patient organisations based in Russia. I hope they can give you some advice.
The national association of patients with CML was founded in Russia in February, 2007. The delegates from regions of the Russian Federation adopted a decision to create the national association "Sodeystvie" on forum in Moscow. Under aegis of SODEYSTVIE were united more than 6 thousand patients with CML
Web-forum CML-Stop is a voluntary association of confederates. Our forum is a place for communication of patients with CML, their families, physicians and other experts on topical issues.
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Translation -
Dlya vas mozhet byt' boleye poleznym svyazat'sya s odnoy ili obeimi iz sleduyushchikh organizatsiy patsiyentov, baziruyushchikhsya v Rossii. YA nadeyus', chto oni mogut dat' vam neskol'ko sovetov.
Natsional'naya assotsiatsiya patsiyentov s KHML byla osnovana v Rossii v fevrale 2007 goda. Delegaty iz regionov Rossiyskoy Federatsii prinyali resheniye o sozdanii natsional'noy assotsiatsii "Sodeystviye" na forume v Moskve. Pod egidoy SODEYSTVIYA byli ob"yedineny boleye 6 tysyach patsiyentov s KHML
Veb-forum CML-Stop - dobrovol'noye ob"yedineniye konfederatov. Nash forum - eto mesto dlya obshcheniya patsiyentov s KHML, ikh semey, vrachey i drugikh spetsialistov po aktual'nym voprosam.
By coincidence, I am presently reading Cancer Ward by Aleksandr Solzhenitsyn. That book examines cancer treatment in the USSR in 1955.