28 July – Day of fight against viral hepatitis. According to unofficial data, in Russia about 5 million patients. About how people can seek treatment from the state, how much are the new drugs, and as patients get banned in Russia Indian generics, and, most importantly, why do you send Dmitry Medvedev postcard – “Pravmiru” said Nikita Kovalenko, the Chairman of NGO “Together against hepatitis”.
Nikita Kovalenko. Photo: Anna Medvedeva
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If the virus is not killed, making transplant, hepatitis says: Oh, fresh liver!
— Why do you congratulate Medvedev on the day of hepatitis?
— No one in the country not zaparivat about hepatitis C, sorry for the slang. We are trying to pay attention to this problem. In 2016 Russia signed the who strategy on hepatitis, but nothing has changed. In all regional Ministry of health, we sent the query – how do you cope with the disease. No way.
On the concept of the who, all actions must be conducted in accordance with the national plan, so let’s create that plan! Last year we collected 5 thousand signatures on change.org but these petitions do not amount to anything. And Medvedev will come specific cards from specific people in the mail. Will bag cards, you do not need it — well, go and throw it in the trash. This is how you treat us. Threw out the appeal — it’s you that patient threw who signed.
— What was supposed to be done in the framework of the strategy who?
— The only thing that made a register of patients with hepatitis that will allow you to plan treatment. However, the registry staff have to negotiate with specific hospitals to append their patients. And not all of it is going on. The official orders that would oblige everyone to contribute data, no. You need a plan! We don’t even know how many patients should be treated.
We have appealed to the government, they dropped our appeal to the Ministry of health. And they say no money, the problem is expensive. So we need comes from the top.
— If there is no money, why do you think that you will be able to achieve something cards?
— But let’s at least calculate how much money you need. We don’t even know in the abstract we say that there is no money. For some reason on FIFA world Cup and the Olympics we have the money. And for patients with hepatitis b in fact only two regions at least something to do: Moscow and the Moscow region. Officially sick of 1.8 million people. According to experts actually 5 million. But nobody knows for sure. We, of course, surpass China, Egypt and a couple of countries. But 4% of the population with hepatitis — that’s a lot.
— The state loses, if not cure these people?
The liver is responsible for many functions in the body. Some diseases of the endocrine, cardiovascular, immune systems, even problems with the Central nervous system really can be due to poor condition of liver. Only a few people finds the reason. People are very tired, often take sick leave. All this affects productivity, which, according to statistics, in our country is significantly below the level of developed countries. Then live up to cirrhosis.
A liver transplant is 2 million and annual maintenance are almost the same. But if the virus is not killed, making transplant, hepatitis says: Oh, fresh liver! And all over again.
Two years ago at a conference in Sochi, the doctor talked about a patient who three times a liver transplant. Once transplanted, hepatitis is not cured, the disease ate the liver. The second time was transplanted into already cured human drugs direct antiviral action. And he gets infected again! The elderly grandfather was there. Just C do not create immunity, and vaccines do not.
— Many people are now unable to be treated due to the budget?
— The state treats around 10,000 people a year. And new cases are reported annually 55 000. In 2017, was already 67 000 cases of hepatitis C. pace, even the new not be able to cure. To get into the who strategy on getting rid of hepatitis by 2030, we need to treat 123 000 patients annually.
After the world Cup was a shaft of calls “what I’m afraid of hepatitis”
— As of now detect hepatitis, still by chance?
— Accidentally! Screening no strategy. Although we are better than in many countries. Because many categories of people should undergo screening for hepatitis. Is pregnant women, donors, workers of medicine and so on.
And so, in humans, for example, there are no suspicions, even if he was tired, it is difficult to associate with hepatitis. He said giving blood, well take it just in case, here it is. And find out. Either the person comes already with obvious signs like cirrhosis. After the world championship we have just the shaft of the calls were from the series “what I’m afraid of hepatitis”.
— Wow. “Really?”
— People of joy spoke to each other too close, and then in alarm called us. Although hepatitis C, for example, during sexual intercourse the risk of transmission is low.
That’s the “relatively prosperous citizens” — my favorite expression.
A large number of people who contact the helpline, I don’t think they are at risk. Conventionally prosperous — those who do not use drugs, I sleep mostly with my wife, “just think, once the left went” and so on. But they go to the dentist, a manicure, can you get a tattoo, for example.
— Then we all.
— The fact of the matter is. That was the case, the mother in tears asked. Her child was doing in the clinic some manipulation with eyes, the doctor took the glass wand, which lay on the table. Poked in the eye — bleed. “If he could infect the child with hepatitis?” – asks the mother. And what were you thinking? If you see that the doctor took something non-sterile — on his hands!
When I go to the dentist, she with me all defiantly change. Because he knows that if you see something sterile, I shut my mouth and never open it. And then get up and leave. And write in the complaints book. This is my health!
And once we hotline call from a woman who suffers from diabetes and hepatitis. She has three children. The glucometer checks blood sugar. And she managed one blood glucose meter and test yourself and your children and infect all three of hepatitis.
Tomorrow will not die
— When a person is sick, what he likely will hear from the doctor?
— “Tomorrow will not die”. “Aw, come on, you’re young and not live to cirrhosis”. “It is not treated, forget about it.” “Treatment is expensive, inefficient, better not”.
There is a small percentage of knowledgeable doctors who will say: “Hepatitis C is treated. Let’s plan a treatment.”
Hepatitis b is known since 1956, hepatitis C in 1989. Study it began in those years, and most doctors who meet patients with hepatitis, their knowledge are from those years. About new drugs and the schemas are not know and not heard. For many, until now, hepatitis C is incurable. The average age of the infectious diseases 50 years. And all over the country their 6600. It is very small.
And knowledgeable doctor… last year doctors of several medical centers fired just because they sent the patients to another region. There is a system by which hepatitis under the MLA can be treated by inter-territorial payments. What is it? People from Nizhny Novgorod arrives at suburban hospital, treated for free, but someone has to pay. And the clinic bills the health insurance Fund at the Bottom. And for them unexpected full. Where so much money? Begin to understand, the doctor sent. What he did under the law that a patient recovered from hepatitis and he went endocrine disruption, with whom he had long and unsuccessfully fought — no one cares. We wrote to the Ministry of health, we were told that all is well and everyone is working at their seats or resigned. But in fact doctors punished for unexpected spending money.
— What happens to the patient next? And what is its typical story of the struggle with the disease in Russia?
Typical is accidentally discovered hepatitis. Bumped to one doctor, another nurse or the doctor said, well, you injected, perhaps, or sleeping around. Can you recommend a drink or Ursosan Geptral. Sometimes even patients is why people drink.
Ill continue trying to find a cure. He said that drugs or not, or they are expensive. He’s trying to get treatment at public expense. As a rule, unsuccessfully. Register it, put in a queue and told to wait.
So the patient is 2-3 years walks, trying to knock out the treatment. Then he says: “Oh you”. And stop to walk, waving to the disease. Then, 10 years later develops cirrhosis, it is brought to the clinic, pierce albumin and other medicines. And then everything depends on the will of the patient and his financial capabilities. Of course, many have heard that the hepatitis is treated and begin to search the Internet for where to obtain treatment.
When a person receives analysis and detected antibodies, it means that he’s ever been sick with hepatitis, and was cured during the acute stage of the disease, or he’s chronically ill. Exactly about it can only say PCR analysis. And he in OMS is not included, the patient had to pay for it yourself. In some regions, and the money will not help — for example, no fibroscan that determines the liver. Sometimes it is impossible to even define the genotype analysis to determine the most appropriate treatment in public hospitals is simply no test systems.
— That there are difficulties already at the stage of examination arise?
— Yes, we counted last year, the examination in Moscow costs about 20-25 thousand rubles, and in the regions 10-15 thousand. Even if a miracle happens and a person will take for free treatment, the tests he would do at his own expense.
Husband Packed up and left that same day
— On the forums people keep diaries of treatment. During the year, once a week injected in the stomach medicine. And this interferonbeta therapy, which still is the main treatment for many pain and horror. What stories are you most offended?
— Was at one time a woman who managed to sell the apartment to get interferonalfa therapy. Not recovered, and remained with hepatitis, but without an apartment. She was 60 and she was not at risk at all. And the apartment is not the only case. There was a woman about 40 years old, which is to receive treatment, ostensibly made themselves a disability. Received treatment interferonov, which Yes, was very difficult.
— People describe hair loss, high fever, constant chills, panic attacks, depression. Ribavirin, which goes along with the interferon right the manual says that the side effect of suicidal ideation.
— Yes, people go to therapy according to indications, the doctors taking them off. It is. But I don’t want to focus on the stories about the problems of interferon.
There are several genotypes of hepatitis C virus For the first interferonbeta therapy lasts for a year, cured less than half of the patients. But for the second and third genotypes of the interferon is used only six months and can recover up to 80% of patients. The problem is that for the second and third genotypes free of OMC is currently available only on interferon. If a person has the desire and motivation to recover, why not try? Moreover, the majority of side effects about which you all write, developing in the second half. And patients, having heard stories where people suffer and are not cured, do not agree to the interferon. Say no, never. Not only that, they lose the chance to recover, abandoning the proposed treatment, they lose the opportunity to get free therapy in the future.
— But we can’t say that interferon treatment safely and well? Why am I having such side effects?
— One of the tactics of the hepatitis treatment is to stimulate the immune system. Interferon is a natural stimulant. It is produced in the body when there is some kind of infection. What is chronic disease? When the immune system can’t cope and seems to be saying, well, okay, not going to pay attention.
And when we introduce an interferon, we give a shock to your system and say: “Look what lies in the dark corners and fight with it.” The immune system begins to look for hepatitis and also other chronic infections. It all comes out. And he begins to fight it. This is connected with a large number of side effects. Than older people, the more chronic infections.
A lot going on. Ranging from hair loss and pruritus, mood swings up to the depression. For interferon normally the first two weeks an increase in temperature. At this time a lot. We were activist in the eagle, which was treated, and his genotype. He six months he was treated fine, but six months could not go to work. Yes, 50% of people with large side effects, 30% less, the rest do nothing.
— Say, because of such treatment and families break up because drugs changed the character of the wife, few can withstand.
— Many a family breaks up, when a man comes home and says, “I Have hepatitis”. In Samara, we have supported a girl who got pregnant, got tested, turned out to be hepatitis. Husband Packed up and left almost the same day. I have a very wife went for two weeks and looked askance at me, first like to say, I didn’t secondly, I think I got it. I told her that we do not change, we have lived together for 10 years, come to think, what to do with it.
Let’s not say that interferonbeta therapy destroys the family. Of course, if the family is weak, just give me a reason. Yes, a person under the influence of drugs can be psychological problems, many patients are prescribed antidepressants. But in our world it’s not a crime never, “prozac generation” grew long. The family is not destroyed as a result of treatment. When my wife was tired and couldn’t chop and I have to say to her: “Hey, you’re yourself it’s dug itself and kolis” or ask “Honey, where did you get hepatitis?” This is my choice and our relationship. I supported it, but it happens, of course, not at all.
Come, when the cirrhosis
— At the end of 2013, the world has undergone a revolution: there is a new anti — viral drugs. Efficiency of nearly 100%, much less side effects. In what form this revolution spread to Russia?
Now we have was treatment that you can prescribe, sell and so on. This is the second treatment. Blocked by the mechanisms of reproduction of the virus. When the virus enters the cell, he himself examines, and then triggers the creation of proteins, which is necessary for the Assembly itself. Drugs direct antiviral action found in the cell these proteins and block them. The virus cannot be collected, the reproduction is not done, the person is cured.
— Was the treatment there, but it is very expensive.
— As far as I know, the minimum cost of interferon-free therapy with original drugs costs about 450 thousand rubles. This eight-week course Vicary Pak, it used to cost more because more long-term therapy.
For the treatment of genotype is still daclatasvir and usepreview for approximately 460 thousand. But the most popular combination, of course, daclatasvir with sofosbuvir, and this is almost one million rubles for the course.
— And now about availability. I read that the Ministry of health buys vicaro 40% of the total budget allocated for the treatment of hepatitis. It is 416 million rubles. The money can cure 924, if left untreated for 8 weeks, and someone might need all 12 weeks. This is a drop in the ocean.
— Yes, a drop in the ocean. The pace of those of whom the Ministry of health knows, we treated 213 years. It is in any gate. Need dozens of times to increase the coverage of the therapy.
— Who are these 924 people? I read that the new medication is distributed through connections.
— I do not exclude that to pull. I have heard that the patient pays half the price of the drug the doctor, and he includes it in the free program. In our country possible and such variants. But most importantly, the Ministry of health centrally purchases only for those who have HIV plus hepatitis. That is, these drugs are purchased solely for konfiszierung patients. No patient with mono-infection of hepatitis from this purchasing medications will get.
— And then patients with hepatitis but without HIV to a new progressive treatment? And what conditions of reception?
— As a rule, people turn to a therapist, he sends it to the infectious diseases. And the medical establishment where they treat hepatitis in the region. And there he may have something to offer. In some regions, buy something, and then nothing.
To buy monoinfected regions that lay on their shoulders. Survey regions, we found that some of them are still guided by the standards of 2004. Despite the fact that there are current recommendations. And only Moscow is spending 1.5 billion on the treatment of hepatitis and the purchase of drugs.
— What to do? To move to Moscow?
— First of all to get to the register and find out what you can expect. Then the doctor says, say, I’m sorry, dear, we have nothing for you. Then you can contact the clinics, which operate on the inter-regional calculations. They are, however, very small. Analyses are sent by email, to consult a doctor over the phone, he says, you fall under the criteria or not. And if Yes, then come for the cure.
— And what are the criteria? Cirrhosis?
No, the second degree of fibrosis, but depends on the region. Almost everywhere in the world there is a limit on the fibrosis. Free therapy are people who have lived up to the consequences. Rarely performing absolutely everyone.
— And how do you quote from the forums: “Quotas for treatment were supposed to be in February, but in Tomsk, did not appear, said the crisis. And quota is treated only with interferon.” Further. “We Kaluga treated 12 people a year interferon”. That is, even there is no question about the modern drugs.
Yeah it’s awful generally in any gate. What have you done for hepatitis? We held a screening! And then what? The appearance of activity. In Kaluga, by the way, was the AIDS centre, who treated all the surrounding areas free for the very program of the inter calculations, but then the leaders of the center resigned, went to Krasnodar, and looking for something to do.
However, I always Orient patients to seek help from the state, to go to the regional center for the treatment of hepatitis. Becoming registered, may make in the register, the region will receive information, what treatment, what genotype, what is the degree of fibrosis. This will allow you to plan treatment and to allocate it money.
— While achieve, you can die. Here’s another quote: “In 2013, I was told to wait, there is a new treatment available. When two years later I went to the doctor, he threw up his hands: come on, when cirrhosis”.
— Why the doctor did not cure? He was not given any tools to treat. Because the MoH did not plan, the insurance Fund is not planned, the Finance Ministry has not allocated money. But sometimes, allocate funds, and they purchased some nonsense like Ursosan — this is much worse. It could be treated, at least interferon, I’m not talking about the modern drugs.
In some regions, acknowledging that the conditions of access to the treatment of fibrosis degree F3-F4. It’s already cirrhosis is actually. Each region has its own documentation, which stipulates the rules of the game. And the doctor translates the patient just what is written in the recommendations of the local Ministry of health. The doctor could sincerely wait for a new treatment, but then he said give only to patients with cirrhosis.
The doctor between the patient and the law
— Interferon with side effects, new drugs are expensive, how do people solve the problem? They go on the Internet and found in Egypt, India generics for 50 thousand roubles, right?
— Yes, it happens. There are many reasons: pregnancy planning, adoption, and others who may require immediate treatment. Even if we exclude that patient just wants to be healthy. Very few patients who can buy the original product.
— Why in India there are generics and we do not have and what is their effectiveness?
— Efficiency comparable to the original. When the American sofosbuvir appeared on the market, it cost $ 82.000 for the course. Even the Americans dearly. Patient community around the world said, “You are completely out of your mind and conscience lost.” After negotiations with community producers provided the opportunity for poor countries to make generic versions. With one condition — to sell a pre-specified list of countries with the low income population.
Egyptians, India is now the treatment costs from $ 300. Russia holds the world Cup, the Olympics and the rating of the IMF, we do not belong to the low-income countries. Therefore, we have no generics, and Hindus can’t we officially sell.
— So, we have patients more than in India, but we are richer, so there is no escape.
— Yes, richer, but for the treatment we are on the third place finish. People risk buying to bypass the law and generic, because their quality is not controlled by anyone and it all depends on decency of the seller. In official clinics offer generics for the inhuman money under the counter. Somehow they have a stock of drugs. There are couriers on the Internet, which can transfer money to the card and get the drug by mail.
There are even medical tourism. People organize tours to the same India. There they meet the mediators: go, cash here, they take medicine from here. In Turkey for coats.
I don’t like to talk about it and do not recommend to buy them. First of all, you need to obtain from the official medicine all that she can. And if the patient is willing to take risks, spend money, and if the doctor will take the responsibility to guide a patient…
— And not every doctor will take the responsibility?
Doctor at us in a very vulnerable state. By law he has no right to provide medical care. But if the doctor will prescribe a drug that is not registered in the territory of the Russian Federation (fortunately, all the main drugs for the treatment of hepatitis registered in Russia and the physician can make the appointment), he falls under the article. If the patient something during treatment occurs, and during the debriefing to find out that the doctor was aware of it, he gets up to criminal liability.
— What should the physician do when the patient has no money, the patient is in despair and cries in the office? Humanly, the doctor should tell you about generics?
— The doctor has no right to talk about generics. He must do all that is written in the guideline. To talk about the regimens. Advise the patient to buy medicines on their own — that’s a lot. And to offer generics – from the point of view of the law, a crime. Of course, it needs to use any opportunity to cure the patient. But sometimes between him and the patient is the law. Nobody can force something to recommend, if he is threatened for this criminal punishment. It’s his choice. If he makes it in the patient’s favor, we will fight for the doctor, if it will have problems. But while to us with such queries is not addressed.
No need to run to the cemetery
— As you have started to deal with the subject of hepatitis, because of his wife?
— Yes, in 2010, his wife gave blood as donor. A year later, when she decided to pass the second time, she was told that she had a lifetime disqualification due to hepatitis. Wife never drank, never smoked, never tried drugs, do sports girl, asked the nurse: “how do I?” She threw her analysis almost in my face and said that either a junkie or a prostitute.
A month and a half we’ve been together was at the Ministry of health with posters and leaflets. The meaning of the action was this: “it’s not my fault I have hepatitis and not know where he is. They can get every. People should be treated, give access to treatment”.
We began to openly about the problem to speak, and the patient with an open face is a valuable, almost all diagnosis hide. Then they began to cooperate with the organization “Together against hepatitis”. The wife was treated with interferon, they have not helped, and in 2012, she participated in clinical trials of daclatasvir and asunaprevir, since healthy.
— What are you most hooked, that I wanted to change?
— I then realized that hepatitis is not treated. And anyone can become infected. Most hooked stigmatized attitude. Now our main task — information support of the patient. To help him make the diagnosis, to announce the happy news that hepatitis C is curable, and hepatitis b, you can stop the replication of the virus. To explain where to go and what he can expect. Keep it at a stage of struggle for their rights.
We travel around the region. We offer support for patients, information materials. The doctor appointment in 15 minutes, he doesn’t have much time to talk about hepatitis. This we can do.
— A Ministry of health can not have to print flyers?
— Maybe, but hepatitis lost the “glory” of HIV. In 2017 the Ministry of health allocates 137 million for prevention of HIV and hepatitis. A comprehensive programme. And there is no word about hepatitis. And so, in principle, always. We therefore take this work on themselves, seeking private donations, receive grants. As an ordinary social organization.
— In many countries, public organizations are picketing and the company and the government, requiring treatment and reduce the price of drugs. We have this happens?
— There’s an organization called “Patients in control”. They can bring to the drug company bottle with the inscription: “Cleaner conscience”. Once delivered to the conference the liver, which stuck handles with logos of pharmaceutical companies. And wrote the slogan: “You eat our lives.” And in Portugal at the meeting of deputies of the patients came and stood with slogans. They needed the law was passed. In Malaysia, the community of patients achieved compulsory licenses for drugs.
But there is another way. I got into the Department of health of Moscow in city centre hepatitis. And now they will call me. Ran away from me. Why? Because I associated with people who are satisfied with the action. But the first thing I did was bring two packs of booklets. Here’s to you from us, hand out to patients. And let’s see what we can do together. I know that you are not able to cure all at once. But let’s at least going to do something, we can help.
We hope that we will be heard by the government. We always say that the authority of the Ministry of health is insufficient, it is necessary to include higher level. And if we do not hear, do not know what else. You can come to the Ministry, the company with the posters. It will not solve anything. For the government to come out? Can’t do it.
— Why?
— Put all.
— What to do to fix it?
— Need a strategy, a Federal plan. To understand whom to treat as urgent, as to prevent. According to who, 70% of patients do not even know that they have hepatitis, because it is asymptomatic and, therefore, infect others.
— If you have a friend come and say: “I have hepatitis. Don’t know what to do.” What did you tell him?
— It’s okay, it’s treatable. Let’s see what I can do for you. No need to run to the cemetery and dig yourself a grave. This can be overcome.
