Tuberculosis in Russia: A disease that is not talked about
Being sick in Russia is not only scary but sometimes it is embarrassing - a number of diagnoses are surrounded by a stigma of such strength that it causes others, including some doctors, a mixture of horror and contempt. And if one of these diseases - HIV - is gradually starting to speak more humanely and less unscientific, then it does not seem to be said about tuberculosis at all. Deadly tuberculosis from the classics of Russian literature, the disease of the homeless and prisoners - that's about all that it is customary to know about him. Few people suspect that in 2016 it literally can happen to anyone: every third person is infected with the dormant form of the disease in the world, and in Russia almost every first. Nina Nazarova talked with people who had the disease, and doctors about how they treat for tuberculosis in Russia, and also figured out the scale and causes of the problem.
Fatigue
From her third year, Ksenia Shchenina remembered mainly the feeling of endless fatigue and constant guilt for her: "Fatigue, fatigue, fatigue, getting up in the morning is hard, the feeling that I can’t cope with anything and everything falls out of my hands." It was 2008, Ksyusha was twenty years old. She came to Moscow from Khabarovsk, studied at the Institute of Journalism and Literary Art and led a student life in her classic romantic twist: concerts of the White Guard, love, meetings with network friends, first publications in Time Out and on Zvukakh.ru .
I didn’t go to the doctors - there were no other symptoms, so Ksyusha blamed her state of mind on her own character and scolded herself all the time: “I’m lazy here.” I got to the doctors only when I arrived home for the summer holidays and, closer to departure, I decided to be examined in my native district clinic for the year ahead. The therapist issued a referral for tests, sent to a cardiologist and for x-rays.
But when it came time to get the results of fluorography at the reception, for some reason Ksenia was not given them and was sent to a doctor. The following dialogue took place in the office:
- What is your last name? Ah, so it's you!
- I mean, me?
- Come finally? And where have you been for two years?
- What?
It quickly became clear that when Ksyusha in 2006 came home for the summer after the first year, and underwent medical examination of doctors on duty, then flew back to study without taking the results, the changes that were characteristic of tuberculosis were obvious in the picture. To a reasonable question, why they didn’t say anything about it, the doctor answered that they kind of called home. Indeed, my mother recalled, a couple of months before they called from the clinic and said: "Your daughter has something there with lungs, even when she is in Khabarovsk, she will enter." Mom exactly conveyed the message to Ksyusha: "Something with lungs, you will come home during the holidays, come in."
It was the end of August, return tickets were bought to Moscow, a week later the fourth year began. The therapist announced: "If you are lucky, keep within a year. Tomorrow in the morning with a ticket to the pulmonologist." - "I have things in the morning, can I come back later?" - "Do your lungs decompose, what are you doing ?!" Then Ksyusha quietly held out “Aaaaaa” and left. "No brochures, no explanations, whether this is cured or not cured, what should I prepare for, what is this disease of the great Russian writers."
The dormant tuberculosis bacterium, according to WHO, has infected a third of the world's population. Russian doctors say the figure is much more impressive - Koch’s wand carriers are from 70% to 99% of the country's inhabitants. But, despite the striking contrast in numbers, the difference for the time being is small: a person gets sick only if the bacteria enter an active stage - this can happen when immunity drops sharply. While immunity is in order, a person, even as a carrier of bacteria, is healthy and not able to infect others.
From tuberculosis die. But they die if the disease is neglected or the person is not treated for some reason - the timely observed tuberculosis is almost 100% curable. The bad news is that if oncology and HIV are at least partially heard, and the need for prevention and regular tests are reminiscent of both activists and the media, there is practically no tuberculosis in the current information field, and therefore it is not noticeable in the early stages. it is simple. In addition to the "great Russian writers," the disease is associated with "consumptive young ladies", as well as with marginal and declassed elements - for example, homeless people or prisoners.
"Mom was shocked when she heard my diagnosis - after all, there is a stereotype that it is a disease of alcoholics, drug addicts and dysfunctional families"
Few people know that most people get sick at the age of 18-44 years old, and the peak is at 25-34 years among women and 35-44 years among men. When Masha was diagnosed with tuberculosis after eighteen years of long-term treatment for pneumonia, her family found it so difficult to believe that she and her mother went to Moscow to the Central Research Institute of Tuberculosis on Yauza for confirmation. The name "Masha" is not real. Accounts in "VKontakte" and in Skype, through which we communicate, are also registered in a fictitious name. The conversation goes without video and any personal details - the girl does not even name her hometown. Masha's onset of the illness is similar to the story of Xenia: "I felt weaker than usual for about four months, but I blamed on the fact that it was winter that I went to work six months ago, and I get tired of unaccustomed. There was a long cold, I thought I would drink vitaminchiki in the spring. girlfriends talked, those in response: "Oh, I also get tired". "
Masha has been healthy for a long time, she entered the university and got married, but for several years spent in the TB dispensary, none of her current entourage knows, except for her parents and her husband - the social stigma of tuberculosis is such that it is scary and shameful to tell. "Mom was shocked when she heard my diagnosis - after all, there is a stereotype that it is a disease of alcoholics, drug addicts and dysfunctional families. And we have a prosperous intelligent house, our own business. Where from?" Only when she got sick, Masha did not make a secret of this, but after talking with people in the hospital, she was very frightened: "Even one brother turned away from one girl: do not call, do not write to me more - to that extent."
And most importantly, the idea of the symptoms of the disease remained there, at the level of the novels of Turgenev, Dostoevsky and Lydia Charskaya. But the familiar in classical literature symptoms like bloody sputum appear in the later stages. In fact, the signs of tuberculosis are as follows. Chronic fatigue, irritability, sweating, the temperature slightly rises to 37.2-37.5, while it is easy to carry on his feet: there is no chill. And no bloody cough. And often even the most ordinary cough. In most cases, people with the initial stage of tuberculosis just do not think that something abnormal is happening to them: a desire to sleep, a decrease in working capacity, the “need to go on vacation”, “something I'm tired” conversations are attributed to the tension of modern life. There is a joke among the patients of the TB dispensary: "If it seemed to you that a close person suddenly began to behave like the last m ... send him to fluorography, perhaps he has tuberculosis."
"Silent and hard"
In Russia, tuberculosis is officially recognized as a "socially significant" disease - this means that it is treated on a mandatory and free basis. Everything passes in specialized institutions - tuberculosis dispensaries: doctors prescribe tests and treatment and attach to the hospital.
The tuberculosis dispensary in Khabarovsk, which Ksyusha got into, looked exactly like demotivators about the state of Russian medicine: a seven-bed ward, rusty pipes and headboards, rubbed to concrete linoleum. Cockroaches crawled through the books and in the literal sense of the word fell on his head.
But much stronger than the living conditions Ksyusha remembered the feeling of confusion during the first weeks. There were an infinite number of questions: what does a particular analysis say, how does its diagnosis differ from that of a neighbor in a ward, why this procedure is needed, how the treatment is arranged and what will happen. In this case, all the questions the medical staff answered something like this:
- Do you have any side effects?
- And you thought you got into a fairy tale? We don't have candy here.
The atmosphere was oppressive, the neighbors in the ward rehearsed the passions-horrors and frightened each other with operations: "I went to the bike, that everyone would die after the operation, no one lived for more than five years."
Tuberculosis is treated with antibiotic chemotherapy. The best option you can count on is six months. Two months enhanced antibiotics, four - supporting. This is if the disease was caught at the very beginning of development. The treatment most often goes to the in-patient department — a queue to the nurse lays out by the hour, and everybody drinks pills under supervision: “You’ll never see such a parade: twenty people stand in a row, throw and drink, shower and drink”. An impressive slide is taken up of tablets: depending on the form of the disease, they take from 12 to 22 pieces per day - in four months 1320 drunk “wheels” ran at Ksyusha. The worst thing that a person suffering from tuberculosis can do is to arrange even a minimal omission in treatment: resistance to antibiotics develops very quickly and tuberculosis from a drug-sensitive form easily mutates into the “multidrug resistance” stage. Such tuberculosis is also treated, but the drugs required to cure it are less accessible and more toxic to the body. By order of the Ministry of Health, treatment of drug-resistant forms of tuberculosis is strictly controlled, to the extent that the nurse has the right to ask the patient to open his mouth and stretch his tongue to confirm that he has swallowed the pills. Such severity is due to the fact that with this type of tuberculosis, bacteria that are already resistant to antibiotics can be transmitted to other people.
Contagiousness, or, in medical terms, the epidemiological risk of tuberculosis is not associated with drug resistance, but depends on the extent of lung tissue damage and the access of these damaged masses to the bronchi. In everyday life, this is called an open or closed form, and in doctors it is called a bacterial excretion; it is scanty, moderate and plentiful. Patients with active bacterial excretion are subject to mandatory isolation in dispensaries, and the rest are not, and there is no reason to shy away from them: contact with a person with a closed form of tuberculosis is not dangerous under the condition of stable immunity.
If someone strove to run away home, the attending physician called the person to his office and got out a heavy folder with maps of recently deceased patients.
If the tuberculous process is not completely absorbed, the residual changes are removed by surgery. This happens in about half of the cases and serves as a guarantee of complete recovery - the person after the operation is no different from people who have never encountered tuberculosis.
For most patients, the most difficult thing psychologically is to accept the fact that treatment can drag on very slowly and be complicated by relapses. “I was discharged six months later,” says Masha. “I had love then, I wanted to forget the dispensary like a bad dream. But I was very nervous — the experiences of a young girl in love — and in September I began to feel bad again, I had a relapse. fear: again I have to stay in the hospital, again the patient procedures, in general, I will not go anywhere. I began to look for alternative methods of treatment: massage, qigong gymnastics - I was ready to believe in anything. As a result, after three months I was brought to the hospital in green and the doctors said h then the process went to the second lung, now I need an operation. I was very angry with me that I was delayed. "
Explanatory work and convincing patients of the need to continue treatment in fact falls on the shoulders of doctors. The attending physician in the Khabarovsk dispensary department, where Ksyusha was lying, acted "silently and firmly" in such cases: if someone wanted to run away home or missed medications, she called the person to her office and took out a weighty folder with recently deceased patients' cards - separately, young women under thirty were collected there. Tactics, as a rule, worked, but only increased the fear and confusion that prevailed in the department.
What do people do in the 21st century when they feel a lack of information? Looking for her on the Internet. There were no explanatory and understandable articles for a non-expert, but on the whole Ksenia made up some idea of what was happening to her. Therefore, when, after two months of treatment, the doctor suddenly announced that it was necessary to go for an operation, she protested - it seemed to her that doctors of indifference just want to get rid of her: "I read on the Internet that once some pills do not help, they prescribe others. Well it’s also written! You don’t understand the subtleties. I thought she would prescribe some other pills that should help. They don’t explain anything. " In addition, there were terrible rumors in the department that surgeons were paid extra for each surgery. She told her dad: offend. Dad came to understand. The doctor shrugged and extended the course of antibiotics for two months. Mistrust to the doctor Ksenia now recalls as the most fatal mistake in her life. In two months, decays in her lungs increased threefold. More than one operation was required, but two. At that moment, Ksyusha became really scary.
Ksyusha talks about operations with an embarrassed patter: "Five-lobe thoracoplasty and resection," - looking at my reaction - will I not be alarmed?
This means: they removed the fragments of five edges and cut off part of the lung.
2016 year
In absolute figures, according to Rospotrebnadzor, in 2015 in Russia, 77 thousand new cases of the disease were recorded, in 2014 - 78 thousand. The cases just identified are considered: if a person was diagnosed in the previous year, he no longer falls into the statistics, even if he continues to be ill, therefore, in reality, people struggling with tuberculosis are several times more. The highest incidence is in the Far East, in Siberia and in the Urals. But the statistics are encouraging: now in Russia with tuberculosis, things are much better than in the mid-2000s, when up to 120,000 new diagnoses were put in the year. Over the past five years, a test has been put into circulation that allows finding out in two hours which particular form of tuberculosis in a person is sensitive to or resistant to drugs, which means that one can find the necessary treatment much faster. New chemotherapy regimens significantly increased the effectiveness of the recovery of the drug-resistant contingent. In short, the situation is slowly but improving. Up until the beginning of 2016.
The main factor in the development of tuberculosis (if we are not talking about contact with a patient with an open form) is a weakened immune system. Immunity may fall for a variety of reasons: due to severe stress (divorce, relocation, dismissal from work or entering a university), due to diets or stupid food, due to chronic lack of sleep, overworking, alcohol. But there is at least one condition in which the immune system falls, guaranteed, is HIV. According to the WHO, the likelihood of developing tuberculosis in people with HIV is 20-30 times higher than that among uninfected people.
According to the WHO, the probability of developing tuberculosis in people with HIV is 20-30 times higher than that among uninfected people.
In July 2016, the UN recognized Russia as the epicenter of the global HIV epidemic. At the same time, Russian regions reduced the funding of drugs for HIV-infected people by up to 30%. The deputy director for the medical unit of one of the tuberculosis dispensaries in the Kemerovo Region, Marina M. (the name is not given for the reasons explained below) tells us that over the past six months there has been an extremely sharp jump in the incidence of tuberculosis among HIV-positive people.
The problem is primarily triggered by the lack of antiretroviral therapy at the beginning of 2016 - the connection is clearly visible. In the regions, there is not enough money to buy drugs, plus within the framework of import substitution, Russian-made drugs began to give: "Patients with a severe stage of HIV infection, who used to take therapy normally, are now so toxic to Russian drugs that they have to cancel TB therapy as well. people are unable to take any kind of pill. " It is almost impossible to cure tuberculosis without suppressing HIV infection, but neither Marina nor her colleagues can do anything - the problem is not solved at the level of tuberculosis services: "Apparently, there are a shortage of drugs in AIDS centers, and this is a big problem, which we cannot influence. So we just have trouble. " Other experts in the field of HIV and tuberculosis co-infection also talk about problems in patient-AIDS-center-tuberculosis hospital communication.
For people with HIV-associated tuberculosis, specialized clinics and departments are needed, but despite orders from the Ministry of Health, they are practically absent outside of Moscow and St. Petersburg. Ideally, all HIV-infected people from a certain point need to take prophylactic drugs to prevent the development of tuberculosis. But not everyone accepts prophylaxis, not everyone is registered, not everyone knows this in principle - there is no information.
Истории людей
Подготовку к хирургии, сами операции и реабилитацию, затянувшуюся на полтора года, Ксения помнит как в тумане: "Мне было двадцать, а потом стало двадцать три". При операции повредили нерв в правой руке. Дикие боли, два месяца не дававшие спать, временная степень инвалидности. Возвращение в обычный мир она отсчитывает с поездки на Алтай в санаторий: "Как будто из ссылки попала в жизнь: пять дней ехала на поезде по степи и читала „Игру престолов“".
Very early, having just got to the TB dispensary, Ksyusha with amazement realized that she was there not only the only student from Moscow, but also the only resident of Khabarovsk - her neighbors gathered from all over the region, and at the same time from the Amur and Jewish Autonomous regions: "People argued about matters that are completely alien to me: that the cost of feed for cows has risen in price and how best to grind the tresses. " The neighbor in the surgical department was a woman from the Amur people Ulchi - fewer than three thousand people left in the world: “Very quiet, calm and calm. She was from the taiga, where you can only get during one season for a lot of money, and therefore I spent a whole year in the ward for ten people. We had conversations, like in Japanese cinema. Once I had a strange anesthetic effect, and I caught a bad trip - muscle hypertonus, terrible panic, I asked through tears agreed to the second operation. "I e I am, for what "and I thought..: what everyone is different and its history I wanted to keep the" tolerate.
To record other people's stories, albeit fragmentary, Ksenia began almost immediately. She had problems with accepting her own emotions during the illness: “The person who is sick turns into a fake ass. Whole. People just don’t know how to talk to you. I couldn’t stand it when I felt sorry,” immediately felt angry. one of my friends decided to pretend that nothing is happening, that nothing has changed in our relations. And my rage responded again - how nothing has changed! I am dying! " And, as if by contrast, the more persistently she was interested in the emotions and stories of others. Someday later, she dreamed, she would write a book a la Svetlana Alexievich and call her "Tuberculosis. Stories of people."
And then Xenia recovered completely and again became a laughing curly girl - perhaps with the firm intention to change the world for the better. She returned to Moscow in 2011, recovered in journalism. Wrote the diploma "Tuberculosis - a social disease?" about how the disease is portrayed in the media. Started one blog, then the second. At the same time, she wrote to all organizations connected with tuberculosis in one way or another: “Hello, I really want to do something, use me somehow.” In 2013, Ksyusha was offered to become the administrator of a semi-neglected thematic group on VKontakte. First of all, she changed the old name, which sounded like “Tuberculosis-micro-killer”, to “Tuberculosis: support and answers” (//vk.com/hopetb) and added the slogan “To be sick is shameful!”.
Ksyusha twenty eight. For three years, she has created a supportive community for people with a diagnosis that is not in the mind of the average person
There, Xenia decided to fix everything she herself lacked during the treatment: the possibility of confidential communication and comments from already cured people who are able to support and share experience. Useful links to forums and a database of doctors. At first, I had to take the rap for everyone - it came to curiosities: “I used to go to the subway, and a completely unfamiliar person who just learned the diagnosis writes me in private messages. But I'm not a psychologist! But I came up with a formula: adapts. Within two weeks, the panic is likely to pass. "I took the deadline from the ceiling, of course. But when a person hears that his reaction is normal, often he is released after two weeks."
Now the group is consulted by two phthisiatricians, a children's phthisiatrician, a lawyer (answers the questions of people who are forced to go to work with undertreated tuberculosis or are trying to fire after recovery), and even a psychologist who also suffered from tuberculosis. There is a brochure with popular questions and answers. Ksenia checks the group daily, if the questions are standard, she answers herself, if something is serious or urgent - she writes SMS to doctors asking for a prompt response.
This is a wonderful world, where anonymous half of the participants are anonymous. Even the phthisiatrician doctor Marina M. consults under an assumed name - according to her, in order to give an objective assessment of the work of colleagues: "It happens that I criticize incorrect assignments or ignoring the problems of patients and do not want me to work afterwards with someone Claims called. " Marina, like Ksenia, suffered tuberculosis herself and spends her time voluntarily and free of charge: "Someone needs to hear a second opinion, send someone to research institutes, discourage someone from unconventional treatment methods. Someone writes in general from villages, where there is one medical assistant for hundreds of kilometers and you cannot get qualified help. "
The group has only a thousand participants, but more than twenty thousand people from Russia, Ukraine and Turkmenistan read it every month. All these people are afraid not only to write to the group under their own name, but also to simply add the page to their favorites: they are afraid that their friends and relatives will panic from the very word "tuberculosis".
And at some point, Xenia had everything in her head: you need to create a separate beautiful website, where real stories of people and comprehensive medical information will be collected. So that each rubric is represented by a living person: “Hello, my name is Misha / Sasha / Pasha, by profession I’m one, I was sick with this kind of tuberculosis and I know everything about it,” and you could read his recovery history. So that further went to the medical section, which is the hero. So that the information is verified and set out in an accessible language. So that you can ask a question and get a qualified answer. There is only one problem - in order to make such a site, you need money, time and effort. Or at least money. And they, in general, no.
Ksyusha twenty eight. For three years, she, in parallel with the magistracy, work and private life, has created a full-fledged supportive community for people with a diagnosis that does not seem to exist in the mind of the average person. Ksyusha is enthusiastic and open (among other things, she makes a living deciphering interviews for various publications - and the first question she asked during the meeting was: “I heard your voice so many times that you seem to me like a relative, can I hug? "). She is easily embarrassed. She is painfully demanding of herself. She calls herself an emotional addict: "I can do a lot if I get feedback." Ksyusha really wants to make everyone know about tuberculosis in Russia, no one was afraid of him and everyone got qualified help and support. And she is very upset that this has not happened yet: "Sometimes I think: what if the whole thing is that I am just lazy?"
Photo: Shawn Hempel - stock.adobe.com, Pakhnyushchyy - stock.adobe.com, trotzolga - stock.adobe.com, aleoks - stock.adobe.com, Deymos.HR - stock.adobe.com, primkulov - stock.adobe.com
