Cml - Chronic myeloid leukemia - In Macedonia

Welcome to Hodnici. In this country a right to live have only those sick from leukemia who can pay 2600 euros a month for the necessary medicine. because it's not on the positive list. The family of the 30 years old Mile Stojanovski from the village Lozovo near Sveti Nikole. have been producing tobacco for a year and have only gathered enough money to allow him to live for one month. Hristina Antoska with the disturbing faiths of the people whose live depends from the mercy of the state. You will say. I have 60 years. that's right. I have. but I too want to live. I want to see my grandchildren. I want like everyone... I want to live like my father lived. With tears in the eyes. Lence Livrinik tells about her battle with leukemia. An illness she was diagnosed two years ago. Her only hope is the medicine Glivec. The medicine is not on the positive list and the state doesn't want to put it there. And only for a month Glivec costs 2600 euros. Lenche and her family are forced to buy it every month. They have sold everything they've had. they've borrowed from everyone they know. Health is more important than everything. but their financial condition is already desperate. With Glivec is very good. For a week or two my blood is stabilizing. My leucocytes are leveled. But the financial condition. we can not endure it. Because it's 2600 euros a month. 2600 euros. someone come and tell me from what kind of pay can someone put a side and give that money. Everything I had. I gave. I have nothing. Friends. family. I don't know who else. I can't stand it anymore. Five years ago with a donation from a company that produced this medicine the state made a project for it's free use. This medicine was available to ten people. and later another five patients joined them. But the other fourty were left at mercy. The state can only provide them cytostatics. which can only slow down but not cure the illnes. I think the state is a mother to one and a stepmother to others. I am not against someone taking it. but they can give the medication to us too. through the found. Lence is a real example that with the Imatinip. or better known as Glivec. you can live normally. 00:02:28.701,00:02:32.628 She can move normally. go out. doing all the work around the house. But she has no more money. and the pills are numbered. I have medication for another two months. After those two months. i shall live as God will allow me. Krste Krstev is a father to the 14 years old Sara. She is fighting two years with the chronic miolic leukemia. They've knocked on every door. but the answers were that the state can not provide the medicine. First. we've tried asking for help from the childrens clinic. From the Director. He couldn't. the found had to help us. The found couldn't help us. the ministry had to help us. We've sent a request to the minister. The minister in public. i've said it once. now i'll repeat. he publicly said that there will be medication for the child. 15 months later. we still don't have it. We don't have the medication. We had to buy it to save the child. We've boorowed money. we took credits. There were some good people who through donations made the medication available to Sara. But the solution is only temporary. Unless we get it from the state. unless the doctor from Germany sends it. who for is a second God for us. we will have to manage. to buy it. i don't know how. Little Sara and Lenche until know somehow managed to get to this medicine. but the son of this man has no means to get it. Two months ago he was diagnosed with the chronic miolic leukemia. 00:03:59.408,00:04:04.234 No one in the family works and they can't buy the medication for young Mile. Father of three adolescents. Now we live from production of tobbaco. We work all year. Those money are enough for only one month therapy. And my family has to starve after that. With what right can i look my son in his eyes and tell him. son we only have money for one month live. what shall we do next. Institutions are deaf to the pleas of these people for a long time. who only want their right to live. I would like to adress to the prime minister. And to the ministers. For only a moment. to put themselves in my place. In my skin. If it was their member. would they have the right to take their right to live? Who plays with the destiny of these people? Only God is one. there is no one else who can tell us to live. But obviously now others decide who may live and who should die. You too can help Mile with donations so that he can buy the neccessary medicine. The bank account will be placed on the web page of A1. The life of around 60 ill from chronic miolic leukemia is in the hands of the state.which determines who will live and who will die. The sick are asking all the time for the medication to be put on the positive list. But the found. the ministry and the government are sending them from door to door. The answer actualy is that there are no money. Standing on the road to the European Union the state takes their basic human right. the right to medical treatment of these people. Macedonia is the only country in Europe that does not provide the life saving therapy to the sick from chronic miolic leukemia. Even Albania and Serbia the medication Imatinip. in Europe known as Glivec without thought have put it on the positive list. even though it is expensive. Condemned to death these sick are knockin from door to door all the time. But the state is not interested to provide them the neccessary medication. I can not understand such a hypocrisy. call it whatever you like. In a sea of extraction of money. especially in the health sector. That they can't put aside some additional million euros to provide the medication with which they can provide life to the ill from leukemia. I simply think we are not a priority neither to the health ministry or this government like some who are ill from leukemia. I can't find another answer. Last year seven people have died from this illness. That's ten percent from the total number of ill. Among which there are young people and children. Among those who take the medicine for the last five years through an international project there are successful results. The life span can not be extended with no other cure as with this one. says haematologist Karanfilski. From those patients. nine from the original number are still alive. and without any progresion of the illnes. One patient is deceased. not from the primary illnes. but from a completely unrelated cause.In opposite we would have had perfect results. For the irony to be bigger. the health ministry five years ago in the recommendations for the treatment for this illnes has put the medication as a priority and necessity. But until this day it's not on the positive list. Here is the explanation from the health ministry. The health ministry wants and has intentions to put Glivec on the positive list. but in the frame of the available founds.for which there is a work group set. In the meantime we are looking at experiences from other countries.who are opening special founds for expensive therapy through taxes for cigarettes. alchohol. oil and private donations. There is no explanation why they haven't done it until now. Under preasure from the patients and doctors from haematology the matter reached the government. But the answer was that there are no money from the budget for this purpose. They've recommended the health ministry to aquire the medication with it's own founds. But how. when the government have cut their finances and many heavy ill patients who recieve treatment through the ministry programs were left without their medications. The minister Osmani. i think he has a historical chance to do something for the patients. I think this is his historical chance to be the first minister who has really done something concretely for his patients. I thinks he musn't hesitate and he must provide the medicine .place it on the positive list and provide additional funds with which people can get treated. The management of the haematology clinic claims that they have sent many letters to the ministry and the found. but they say they can not find 2 million euros because 85 percent from their budget is spent on cytostatics. From the health found didn't even try to explain how they are planning to solve the problem. They promised an answer for three days. and after that their spokesperson didn't answer on our phone calls. The medication is a modern therapy. one of the two biggest practical breakthroughs in the treatment of malignant hematological diceases.because the chronic miolic leukemia is a malignant dicease of the blood. This is one of the two medications that in the past two decades have made excellent progress in their successfullness in treating one of the illnesses that we talk about. That's the so called target therapy. A therapy that does not act like other citostatics on all cells. It has a precise target that it acts on... Exactly the citostatics therapy that the world treats like an unhuman way in treating these ill. in Macedonia is the only cure. Experts say that is economicly more affordable to aquire the new medicine. than treat the patients with citostatic and interferone that create horrible pains and nausea and are a reason for diceases.countless hospital days and in the end the patients end up dead. But obviously. mathematics are a weak side of the authorities in the health department and the government. They work without strategy and they forgot about humanity. In the world the ill with chronic miolic leukemia live a long life. Not only this medicine is available to all ill for ten years but new generations of medicine are produced that mean prosper in the medicine and safe life for these people. Seat Rizvanovik with more details. The chronic miolic leukemia for a long time is not considered as deadly in the world. The introduction of Glivec in our country as a standard therapy.it was done in the developed countries ten years ago. Since then the patients with this illnes are considered chronically ill that live a long life. But in the west they already move a step forward. Their health systems are implementing medications for people who have problems with the Imatinip. 15 percent of the patients are resistant to the Imatinip 15 to 30 percent don't tolerate the medication and that results in quality of life. The use of this medication is a progress in curing the illnes because it gives patients a better choice. A year ago in Canada a medication called Nilotinip was put in use.It has the same characteristics as Imotinip. and gives the patients suffering from leukemia a choice. Knowing that there are alternatives out there. if the Imatinip stops working The Nilotinip offers hope to a safer look into the future to me and thousands of other Canadians. Nobody suufering from a deadly disease wants to be told that he can't get the medicine which will save his life. The Macedonian doctors confirm that Imatinip is available for the patients in the countries surrounding Macedonia and have similar health sytems. We are one of the rare exceptions in the surroundings who don't have the medication for all of our patietns. We are lucky that we have it for a certain number of patients. but that is how should i say one practically uneven treating of the patients. I have knowledge that a week ago the European Union has given consent for use of a second generation medications. Nilotinip. More advanced. better dosage. less side effects. The scientists have discovered that the milic leukemia is caused by a mutating gen in the blood cells. It constantly produces protein that signals the bone marrow to produce too much white blood cells. The American scientist Bryan Drucker has discovered that Imatinip acts by blocking the production of the protein. Still. research has shown that even with this medicine the leukemia does not dissapears completely. Therefore atempts are made to find ways to completely cure leukemia. Until now we have treated our patients with almost barbaric methods. There had to be a better way than the hemotherapy. And a better way is to understand why blood cells get ill from leukemia. and to directly treat those cells. Among other ways that have promising results. is the treatment with parent cells. The clinical reaserch on the Californian Institut for Regenerative Medicine have shown good initial results on the patients who were treated in this way. The results are dramatic. At least in my case. And i am very grateful for that change. The Chronic miolic leukemia happens in all ages. but more often with middleage and elder people. The only known factor for the illnes until know is the exposure to ionizing radiation. So increased number of cases of the illnes are noticed after the atomic bombs thrown on Hiroshima and Nagasaki in world war two. And while the authorities realize that with a good strategy and implementing modern medications. not only the sick but the state too will benefit. the time is not an ally to these people. Stay in good health. and i will see you in seven days from the studio of A1. of course.