Good afternoon! I apologize for my English, I do not speak this language well, so I use an online translator. I am from Russia, and here chronic myelogenous leukemia is treated a little differently. I was diagnosed in 2008. Revealed by chance. Before that, for several years, doctors simply did not pay attention to the fact that I always have a fever. The only thing that confused the doctors was the number of leukocytes, which exceeded the norm ten times. In general, they prescribed me treatment with nilotinib. The medicine is very expensive, so they gave it to me for free. But they gave out extremely rarely, once 4-6 years. It is difficult to call this a treatment. Apparently therefore, a malignant tumor formed in my nasal cavity. He underwent several surgical operations and radiation. While the tumor seems to be under control. So, I was treated in this way until December 2019 until local doctors sent me to Moscow for examination. And in the Moscow clinic I was informed that for all these 12 years they were not giving me the drugs that I needed. What is the wrong treatment. It turns out that I had to take Panatinib because some mutation of something was discovered. And they don’t give it out in our country for free and you have to buy the drug yourself. And it’s not really expensive. Therefore, doctors continued treatment with nilotinib. So what am I doing! I just want to say that in Russia it is very difficult for cancer patients, very many die from such treatment. Russia is a concentration camp for its people. Everyone is surprised how I still have not died and continue to live. Everything is very simple, I do not think about my illness at all))). Good to all!
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Treatment in Russia
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.
Hello! Thanks for the answer! I definitely don’t know if Panatinib is on the list of approved drugs in Russia. Most likely, yes. But the problem is different. The state should issue such a medicine for free. But regional officials at various levels simply steal money from the budget. And the medicine should be given out every month. Twelve times a year. And give only three to six times a year. Therefore, treatment is not possible. Progress in treatment is not observed. There are not enough doctors, they are paid small salaries. They go to private clinics. You have to go to an appointment with a simple therapist. Analyzes are very expensive. Therefore, it is not always possible to conduct a survey. So I just decided not to think about it. And it works out pretty well for me))). But relatives are worried. Do not stop trying to cure me. But in my country, all attempts are meaningless. The health care system is rotten. Like everything else. Here the best treatment is not to be treated at all.
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.
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.