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svetlana75 at Medvedev-Golikov-Cystic Fibrosis or how much remains to be dead, Mr. President? Mr. President!
last week you took an active part of your Twitter to showcase exposing the "rudeness of doctors RCCH» . However, I assure you, the patients of Medical Genetics RCCH there are other problems, worthy of your attention to the public. For these problems lead to their early death.
Branch for medical genetics RCCH - is a unique branch , almost unique to children from all regions of the country where they treat patients diagnosed with cystic fibrosis. it employs the most experienced and most knowledgeable specialists in our country for this disease. In most regions the disease can neither treat nor diagnose. Not trained. All the patients were being taken to Moscow.
Cystic (CF) - is the most common genetic disease. in our country they should be, judging from Statistics from other countries, no less than 15 000 people, although the Health Ministry statistics for this disease is underestimated up to the figure in 2186 patients), however, every 25-th person on earth is the carrier of this defective gene. external media did not differ from healthy people. however, there is one difference: these people, they say, can not infected with cholera. Scientists say, that this genetic damage formed in people who survived after extensive cholera epidemics in Europe.
Diagnose carrier can only be conducted DNA analysis - a very expensive, not paid by the state or insurance investigation. testimony to him does not exist, except personal guesses or wishes. if you meet and create a family of two people - they will have 25% chance for the birth of a sick child. During pregnancy to detect Cystic fibrosis in the fetus is theoretically possible, but in practice it happens very rarely on the already mentioned reason - there are no specific indications. no social, religious or national preferences have no disease, ie, - Nobody is safe from the homeless to the queen. children with cystic fibrosis, in intellectual development does not differ from their peers, and even they are likely to outperform. the main difference between them - they soon learn all about death, as used to losing friends such as girls and boys. And so especially appreciate life.
this preamble. and now - outpatient.
in Europe, the average life expectancy CF - 30-40 years. they live full lives, create families, work, self-fulfilling.
disease is not curable at present, but in Europe are constantly research and development of new drugs.
currently fighting the disease is permanent antimicrobial, mucolytic, enzyme therapy, Physiotherapy, also in Europe and the U.S. successfully transplant lung.
any research and development of drugs we have not carried out.
despite the fact that pediatricians through this selfless devotion of these children have learned to stretch and pull them into adult life is full, official life expectancy of CF patients in Russia - 16 years. in connection with this MoU is not an official medical withdrawal for military service - that is, State considers that These people should not live to 18 years. If you are over 18 years, then one of two things: either you die or you do not have cystic fibrosis. Electioneering. So according to the State.
and this position can be traced further in every way.
I want to emphasize - POSITION OF THE STATE. Because doctors are doing everything in their power in those conditions, they are given.
I can not name names, but I know perfectly well that in Moscow there is a doctor, to whom patients with CF may call at any time of day and night, and he threw everything will come to their house with their equipment and will be saved: to put a dropper, connected to oxygen.
why not name the character? but because it is what he is doing - not legal. Save people from death - is illegal in our country. Similar manipulations are allowed to hold only in a hospital. why do not they go to the hospital? - Because it has no place. No stupid people. You see, as I wrote to 18 patients should not have to live out. in accordance with this, for those who are is against the will of the state, crossed this threshold at whole country there are only 4 Beds in MOSCOW IN HOSPITAL № 57 . and yet there is such a word as QUOTA , which the state regulates how much and when people can get sick. and if you were superfluous, or became ill at the wrong time ...
drug provision . Is the same as for all, that was essentially "on you, God, that we do not gozhe. but if more or less healthy people or less would kill for analgin, a patient with CF, without the right antibiotics to miss treatment, the pathological process irreversible develop further, and this will inevitably worsen the prognosis for life. However - even cheaper drugs patients are not provided in full and with great delay. It is not uncommon when your officials oblzdravov meet the parents on their legal requirements by: «there was nothing to give birth to monsters, go here now klyanchat. This is one of the commonplaces of citations.
Charity. eventually drug provision somehow try to regulate the benefactors. But philanthropists ever does not provide lifelong treatment for all patients. Plus the philanthropists have to pay tax to the state for such a pleasure now to help others. bad settled our country: on the one hand saves on the disadvantaged citizens, and on the other side - makes those who do His work!
lung transplantation. is the most "gay issue". At the moment this operation in our country is not performed. altogether. but the plans are. here for a year is what Health Ministry did not forget to report.
do not know whether you are aware, but this summer the whole world was going to a colossal amount - 200 000 euros for transplant pulmonary Paul Mitichkin - the first Russian patients with CF who have agreed to take on an operation to transplant lungs in Germany.
want to make a separate remark. money collected. Paul sent. when he saw the doctors thought it was Buchenwald resumed his work. In general, they asked Paul not to go from the House, because they have never seen such a heavy patient: emaciated, with a bunch of related dangerous infections - it was potentially dangerous for their rosy and plump German patients ... Do you think that they thought at the time of our country, defeated fascism, but leading up to such a state of its citizens?
way, in Russia there is such a law, whereby if the state can not provide treatment of its citizens on its territory, it must pay for it abroad. Why do we collect 200,000 euros for Paul with the world on a string? - Because our the state officially denied it, because " In accordance with Section 2.26 of the Administrative Rules for the existence of the possibility of providing necessary medical patient care in Russia is the basis for denying a citizen of the Russian Federation Ministry of Health of the Russian Federation in the provision of public services . "here and so. opportunity is - wait. It does not matter so much that the patient is no longer live. Well, not live, but to save money, right? you remember what we said to the Prime Minister to the adjacent theme: « There are sensitive things, of course, when foreign manufacturers with the help of our reputable people promoting their products and say that without them all tomorrow there will die without these medications, - said Putin. - It just needs to endure , that's all. We are here on this way, quietly, of course, without jerks, but we will move ».
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well, that the sum you have a picture, Mr President? or you should definitely tell about someone who "Bitch" and called on the "yuh" sent? - Is more compelling reasons for the anger and your high interference, than to describe the violation of laws and omission of a Ministry of Health? you need the trash - guts and shit out? "Well excuse me, patients with CF die painfully, but quiet - they have no strength to cry. but they are dying like flies, more often - too soon, because time is not provided by or due to nosocomial infection, which is indestructible because of crowding beds. and blame the Ministry of Health. pardon my impertinence, but - it's in your and the Prime Minister of competence to do is check the activities of this Office, or you just nurses and doctors can be punished? How much can you arrange a demonstration of doctors spanking? What do you want? And so they already leaving The profession. Who do you want to see in their place? Gennady Malakhov?
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finally look into the eyes of these children . This is real, is real children's graves. If they were diagnosed in time, if they had time to provide medical treatment, they could still live. And they wanted to live. but doctors are not one of the holy spirit treated. And also do not treat with penalties, withholding of wages, penalties, and budgetary savings. Start saving those who are still alive! us Need modern hospitals, medicines, adequate, and not the residual financing! without it we'll die - as you such a theme to remove the Top?
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