Last autumn, due to waves of protest in social media, our country learned the word "cystic fibrosis," which means either a sentence to a painful death or a full-fledged life supported by permanent medication intake. Everything depends on where a person suffering from cystic fibrosis lives. If the scene is set in Russia, he or she is ill-fated. If in other countries, his or her chances for a normal life are high.
In early December, wek.ru published my article ‘Sentenced to Death’. It tells about the problems of people diagnosed with cystic fibrosis, which were caused by state policy in the field of healthcare, and deprived of essential drugs. The general policy of import substitution and the cruel system of drug supply, completely excluding any humanity, have led up to a situation where imported drugs of high-quality have disappeared from the country. Their replacements are cheap domestic generic drugs that have not passed all necessary clinical trials. These “drugs” do not cure seriously ill people, but maim them.
At the time the article was published, the main concern was that if the system of public procurement of medicines did not change urgently, cystic fibrosis patients would start dying en masse. Since then, the federal government and top officials of the Ministry of Health have changed but the vital medicines needed for life have not reemerged. The worst forecasts began to come true.
I asked an expert about what is happening now to people diagnosed with cystic fibrosis. Maya Sonina, the head of the Kislorod Cystic Fibrosis Foundation, knows so much about it that it is really beyond comprehension how after passing through so much pain and grief she still manages to find the strength to continue fighting for the lives of people whom the government policy has doomed to dying. I met her when I was working on my first article on people with this disease. Now we have met again, and I offer our conversation to the readers of wek.ru.
- The media reported that 6 people have recently died from taking generics instead of original medicines. Do you know anything about that? Do you monitor cases like this? Do you do any monitoring?
- I can only talk about the deaths that I know about. Since the beginning of this year, seven people have passed away. However, we cannot say that all of them died because of generics. It is a general complex problem in this country – the problem of medical care as such. The causes range from late diagnosing to sporadic treatment, including untested generics. There are many factors here -- not because of the disease, but because of the healthcare system in our country.
I can tell from my experience of working "in the field" that it is organized in a way that no one is responsible for anything in the final run. Unfortunately, the federal Ministry of Health only gives recommendations. Moreover, only if someone is very persistent in demanding some words and actions, the ministry may promise something.
However, these promises are likely to hang in the air, for example, because of a change of the cabinet, some reshuffles and so on. I see it this way: after all, the regional Health Ministries are not subordinate to the Federal Ministry of Health, but to the so-called "local power brokers." The latter act in a way that, according to their opinion, would be consistent with the latest trends, recently adopted federal laws and requests from the upstairs. They are afraid of not pleasing the federal government, being out of trend and or failing to meet current requirements.
- And what about the regions: do they differ from each other? Are there places where the situation is better or worse?
- Partially, yes. These are the regions where doctors and physicians-in-chief are not afraid to take initiative, to communicate with specialized doctors who are heavyweights in their respective fields, and to admit that they lack knowledge, skills and experience and, therefore, they need to consult and learn. They are not shy about contacting dedicated experts. When a dialogue between doctors from the regions and medical specialists from the center occurs, you have a chance to save a concrete patient -- to brace him for treatment, to bring to Moscow and to arrange hospitalization.
- Are these specialized doctors located only in Moscow?
- Not only in Moscow. Also in several other large regional clinics but there are just few of them.
- Could you, please, name any regions where patients are treated so humanely?
- I’ll name Novosibirsk and Kazan. As well Omsk, but only with regard to pediatricians. Recently, the pediatricians in Omsk managed to drag a girl out of the terminal phase, keeping in touch with the doctors from Moscow. However, they do not hope to bring her to Moscow, where she may receive a lung transplant because she has turned 18 years old and will no longer be under the care of the pediatric clinic. Moreover, there are no doctors to manage her -- doctors who are in charge of adult pulmonology, obviously are not interested so much in fighting for the life of this girl.
- Don't the cities as big as Novosibirsk and Kazan have their own pulmonology centres?
- They do. Formally these centers exist almost everywhere, but only for the sake of box-checking -- there is no bed capacity, and doctors are not interested in anything. Especially since they do not have any financial motivation, they themselves have a hard life, and they are burnt-out professionally. Unfortunately, these human factors have a great influence on the physicians’ interest. Therefore, we all did not like the tendency of the new officials at the Ministry of Health, when they started blaming doctors for all the problems again.
- The problems with early disease detection and with proper treatment of a patient: have they existed always or did they worsen in recent years?
- They have existed all the time. Occasionally, Moscow doctors come to the regions, give lectures, explain and teach -- given the presence of will, but this will is often very difficult to activate in the regional doctors and regional parents likewise, because everything ultimately depends on them. And they have already given up the struggle and put up with everything.
- Yes, both parents and patients themselves because they have been told, well, what do you expect from a disease of this kind and why do you come to us? You should go to charity foundations. So they keep procrastinating, and when a person really starts dying, they call a charity foundation. And what can the charity fund do in this case? We are not magicians, we are not rich, and we cannot replace the whole government system with ourselves.
- They are refused state treatment on the basis of what, no money or no experts?
- Because of the absence of funds. That is a legitimate reason to refusal. But it looks like there is a shortage of experts, too, and those doctors who still work are simply losing humane attitude. They are made of flesh and blood, they are all mad tired, and they are poorly paid. This is a human factor. And it's induced from upstairs.
- Perhaps, the general environment where doctors feel unprotected and guilty from all sides may affect them. Is it likely to be so?
- Absolutely. Doctors are afraid of everything, and there were precedents where doctors were sentenced to real prison terms and accused of everything. They are really frightened.
- And what region is the most problematic?
- I can name a lot of difficult regions. These are the southern regions: Rostov, Stavropol, the Krasnodar territory, Vladivostok, Kemerovo, Altai and so on. The local doctors do not want to talk to anyone at all.
- Is it strange that even St. Petersburg transfers patients to Moscow, too?
- Yes, it is.
- And if a child with this diagnosis is born in Moscow: what are his or her chances?
- Nobody says that everything is great in Moscow, and there are problems with drugs, too, and diagnosing may take quite some time. However, there are more opportunities to get information in Moscow. In the remote regions of Russia families are completely browbeaten. Soap operas are all the information available to them. Those are the most problematic regions.
Nowadays, competence plays a very important role. I mean both regular literacy and legal competence. A lot depends on both of them. But it looks like access to this very competence is cut off.
- Maya, is lung transplantation that many of your wards are waiting for the only drastic measure to save and improve the quality their lives?
- No, of course, not, because the Western countries, treatment with targeting drugs has been already used. This significantly improves the quality of life and its duration. But if patient begins to take drugs too late, not from birth, when some organs have already been severely damaged, palliative care should be carried out simultaneously, too. Anyway, targeted treatment slows down a greater part of the most severe mutations. Thankfully, the medications of this kind have already been developed, and you have to take them throughout your life. They are too expensive for us. For example, U.S.-made Trikafta costs about $300,000 a year. There are similar drugs in Europe, too. This treatment is paid up as part of a state program.
In Argentina, they are making a generic of this drug. Reportedly, it has already passed the initial clinical investigations and costs significantly cheaper. There is only one hope left for us. In addition, we have to think of how to document it – there will be a maze of red tape, apart from the money problem.
- And what about the drugs? Last time we had a conversation there were letters, pickets over the need to cancel or at least to revise the federal law on public procurement because original drugs cannot be replaced by generics...
- You know, generics differ. There are high-quality generics, too.
- The ones that we still have?
- The ones we have are often of poor quality. Parents and patients are afraid of generics because they've had negative experience with them.
- Are there any documented cases of patients who died because the medicines they used did not treat properly, the side effects were very severe, and all of this led to death?
- We see it as if in real time ... That is, we see how it happens when a person is treated with some crazy, horrible doses of generics. He or she gets worse, and then is discharged from a hospital with deterioration. We can compare it to how he or she has been treated with the original drugs, and they have been helping. Well, in these cases yes...
- Is a person discharged to die at home so they don't damage their statistics?
- Well, it seems so.
- Basically, the world is open enough, and it's not that hard to buy a necessary medicine abroad. However, in order to buy drugs in other countries and bring them here, you need some kind of permits not to get detained at customs?
- Yes, and this is one more problem. It could be detained. This is unpredictable: we live in an unpredictable country. Some people can afford buying medicines for themselves – one-time. But by the moment they manage to do it and all the permits are ready, the condition of a patient inevitably worsens. The disease will not wait.
- And how do foundations get medicines?
- At the moment, they don’t. Only if somebody I know can bring a medicine occasionally, but only for personal use.
- In other words, not as a foundation, but as a private person?
- Yes, of course.
- Do you know what completely disturbs the balance of my mind? Mishustin, the new prime minister, talks about ensuring medication almost at every government meeting. However, he never mentions that people should be provided with medication in general so that ill people have a chance to get high-quality treatment. He talks about one particular disease, whether it is cancer or atrophic nervous diseases. I have not heard him speak about people with cystic fibrosis. To my thinking, the situation is outrageous. Apparently, it is just a PR exercise for Mishustin and for the government. I mean, they are not solving the problem that way.
- No, they are not. Even when a catastrophic situation with leukemia was in the spotlight. Alexey Aleksandrovich Maschan raised that topic. As a result, patients were told: there will be no original drug, there will be a Russian generic. Apparently, this is shown off as procurement.
- Are the promises to buy drugs abroad just words for now?
- Well, we have heard a lot of promises over the last 20 years.
- So nothing has changed since our last meeting? Many reporters wrote on this topic, you rang the alarm, and the patients themselves and their parents put up pickets – and all the activity has led to nothing?
- You know, constant dropping wears away a stone. Otherwise, why do we work? We have to keep working on some other legitimate moves. To take strength from somewhere...
- The situation is so crazy that I don't even know what to write to help pluck it out of the deadlock and not just to state how bad it is.
- I would really hate to see patients, especially young mothers, read all this, because they are already nervous and overreacting. One can imagine what it is like for them to know what happens, to hear about deaths and so on. I am watching all of this, and on the one hand, you have to be aware of the situation, but on the other hand, unfortunately, the fear and horror of what is happening prevails.
- Does this mean information does not mobilize them, but on the contrary, paralyzes them?
- I think so, because there are already voices calling, Mr. President, hear us! Well, where to shout to the President to be heard?
- Are there a lot of families who leave Russia after they get to know about a diagnosis of this kind in their children?
- Anyone who can afford to leave the country does it. But these are very few.
- Is it all about financial capabilities?
- Yes, of course. If they talk about themselves, they say, since nobody needs us in our country, nobody needs us there.
However, that is not the way out. It is impossible to evacuate everybody from the country. That is why we have to find a way to survive here. The first thing we need here is a centralized state program for life-saving medications. It should be centralized so that the federal Ministry of Health is eligible to speak up in the regions.
Maybe it is time for the Russian officials to listen to the opinion of their fellow citizens? Especially if it is the opinion not of an average citizen but that of an expert, gained through suffering and years of serving people.