In Russia, there is a constant shortage of medicines due to complex laws, import substitution and attempts by the state to reduce prices. In the pandemic, the situation worsened. What can you do about it?
In Russia, there is a constant shortage of drugs, including those that are needed by patients with chronic diseases and in emergency situations. They often cannot be replaced. During the pandemic, the problem only worsened. Meduza decided to explain why such situations regularly arise and what can be done about it.
Why medicines go missing – and what to do about it
AS SHORT AS POSSIBLEPART 1
How medicines disappear
“Have a three month supply.”
Seven years ago, Viktoria Ryzhkova began to develop rather strange symptoms: she began to speak very quietly and not quite articulate, she began to sway when walking, she stumbled all the time, and her face became asymmetrical – the left half was led down. As a result, it turned out that she had Wilson-Konovalov disease , a rare genetic disease in which the body cannot excrete copper, it accumulates in organs and tissues. Without treatment, this disease leads toto cirrhosis, severe weakness, brain damage and, ultimately, death. The only drug that helps with Wilson-Konovalov’s disease and at the same time is sold in Russia is “Cuprenil” (penicillamine). But it is not always on sale. During the seven years that Victoria was ill, he disappeared from pharmacies twice. The last time happened when, in November 2020, the pharmaceutical company Teva announced that it was taking this drug from the Russian market and would no longer sell it.
Victoria buys the drug herself. For her, 9,000 rubles a year, which she spends on this medicine, is not such a burdensome amount, and bureaucratic problems in obtaining free medicine are stressful – “my nerves are more valuable than this money”. Therefore, she noticed only two episodes, when “Cuprenil” disappeared from pharmacies. Many other patients were left without medication more often during the same years.
“People with illnesses most often have disabilities and cannot work normally,” explains Viktoria Ryzhkova herself in a telephone conversation with Meduza. – They will not be able to spend their entire pension on the drug. I live in a big city, I have an income, and I have very small dosages of Cuprenil. I drink two pills a day. Accordingly, one package is enough for me for 50 days. How many such packages do I need per year? I can afford to buy them. And there are patients who drink six or eight Cuprenil tablets a day. What is enough for me for 50 days is enough for them for 10, and of course, it is very important for them to receive this “Cuprenil” for free, because otherwise you will go broke. Or, for example, it is a large family where all children have Wilson-Konovalov’s disease. “Advertising
For many diseases that qualify for a benefit , it is theoretically possible to receive medicines for free, they are purchased at the expense of the federal or regional budget. But this has a downside: you can be left without a medicine, not only because it is physically absent in Russia, but, for example, because of the disruption of purchases.
Viktoria Ryzhkova is a very active patient, she has acquaintances in the media, and this is one of the reasons why the news about the deficiency of “Cuprenil” got into the media and was covered in detail . When medicines for the treatment of oncological diseases go missing, they also write a lot about this . Oncologist Mikhail Laskov explains this by the fact that “the topic is hype, life and death.” But mostly news about drug shortages passes through patient communities and is limited to posts on social networks. At the same time, medicines disappear all the time : vaccines , drugs that are needed for people with depression , tuberculosis, some forms of arrhythmias , rheumatic diseases, HIV, hepatitis C and many others.
BUT IF YOU HAVE BEEN READING MEDUSA FOR A LONG TIME, YOU KNOW
- Russians with rare diseases face drug shortages due to coronavirus epidemic
- Charitable foundations complain to Putin about the “catastrophic shortage” of drugs for cancer patients
- A vital drug used for rheumatic diseases and covidum disappeared from pharmacies
- This is not a panic, this is a disaster In the Saratov region, patients cannot get free insulin. Meduza found out that there are problems with medicines all over Russia
- In Moscow, there were interruptions in the supply of medicines for cancer patients
- “I don’t know how to treat a child” Russia is running out of quality medicines for patients with cystic fibrosis. One of the reasons is import substitution
- We held our breath and have been waiting for 10 months. How people with cystic fibrosis live during covid. Due to the pandemic, they lost doctors and medicines
- Why is it so difficult to get the right medicines in Russia? Explains the doctor Alexei Paramonov
- Russia stopped selling a medicine for a rare genetic disease
Sometimes drugs do not completely disappear: for example, generics , other forms, or other dosages remain . But that can be a problem too.
In Russia, generics are of an unpredictable quality and it is not always possible to rely on them. Therefore, in February 2020, 142 specialists in oncology and hematology signed a resolution (Meduza has at its disposal), which called on the Ministry of Health to simplify the procurement procedure for drugs by commercial names. Experts stated that “there are problems with providing quality medicines to sick children.”
The problem may also be with the lack of the necessary dosage forms. “About 60% of people with rheumatic diseases take methotrexate on a weekly basis ,” Polina Pchelnikova, vice president of the Russian Rheumatology Association “Nadezhda,” said in a telephone conversation with Meduza. – That’s more than a million people for sure. Accordingly, some of them take methotrexate tablets. Since September 2020, there are no imported methotrexate tablets . This is a problem for patients, because some of them are intolerant to injections. But the personal economic situation does not allow another part of patients to buy the drug: injections are much more expensive than pills. “
Medicines can suddenly disappear. Therefore, patient organizations advise everyone who takes some drugs on a regular basis to keep a supply for several months. “The story of the loss of medicines is not new,” says Polina Pchelnikova. – We constantly lose certain medications. To avoid hassle, we recommend having a three-month supply if available. But we notice that some patients, seeing that everything disappears, succumb to a certain panic and start buying drugs with a one-and-a-half year supply. Thus, creating even more increased demand and contributing to the disappearance of these drugs. “PART 2
Why do they disappear
Reason # 1: “Excessive price regulation is in the first place among the reasons for the deficit”
When Kuprenil disappeared for the last time, at first the Teva company did not comment on what was happening. Then, according to Victoria Ryzhkova, she said that it was a temporary delay. “This time, of course, we found ourselves in a terrible situation, when Kuprenil disappeared from the shelves altogether,” says Victoria. “We bought something that we could, and received a letter from Teva that they were leaving the market with this drug. It was terrible”.
One of the reasons the company later called “the pricing rules for drugs included in the List of Essential and Essential Drugs. Due to the impossibility to re-register the maximum selling price due to a significant increase in production costs, the supply of these dosage forms remains economically unfeasible for the company. ” In other words, Teva could not sell it at a higher price, despite the fact that production rose in price.
The list of vital and essential medicines (VED) is approved by the government. Medicines on this list should remain affordable, beneficiaries receive them free of charge, and their prices are regulated by the state. On the one hand, if a drug is on this list, it must be regularly purchased, which is beneficial to manufacturers. On the other hand, there is the same maximum selling price that is mentioned in the letter to Teva. That is, this is the maximum price (excluding VAT) that a manufacturer can request for a drug included in the VED list. She is approvedMinistry of Health and the Federal Antimonopoly Service. A manufacturer can ask for a price increase no more than once a year and for this provide calculations indicating the inadmissibility of the current price. Not only Teva, but also many other pharmaceutical companies have repeatedly stated that they are withdrawing drugs from the Russian market or reducing supplies due to the fact that they are refused to re-register the price.
“In the EU and the US, the main reasons for the deficit are production and technical (for example, lack of starting or raw materials) and regulatory (for example, problems with compliance with good manufacturing practices – GMP), while we have the first place among the reasons for the shortage is excessive price regulation that runs counter to the tasks of protecting human health and hinders the development of domestic analogues, ” writes Ravil Niyazov , a specialist in the development and regulation of drugs at the Scientific Consulting Center, in his Meta-F telegram channel.
Price regulation in itself, Niyazov said in a telephone conversation with Meduza, is justified, and to understand this, it is enough to look at the negative experience of the United States, where drugs are very expensive and there is no such direct price regulation. However, the expert recalls the 1989 European Directive: “It says that the states of the European Community are obliged to make efforts to ensure that price regulation is rational, focused on human health, but at the same time stimulates the efficiency of drug production and the development of new drugs.”THERE ARE OTHER REASONS TOO
Reason number 2: “Instead of an abundance of domestic drugs, we have received the complete disappearance of dozens of names”
To help with import substitution is called the rule of public procurement, which is called the “third extra”. Since 2015, if two or more suppliers from the Eurasian Economic Union enter the bidding for the purchase of drugs from the VED list , then a supplier from other countries cannot be selected. “This rule was introduced as part of the import substitution policy,” writes Elena Gracheva, board member of the AdVita charity fund to help cancer patients. – Let me remind you that in 2009 the so-called Pharma 2020 strategy was adoptedand it was planned that by 2018 96% of drugs from the VED list will be domestically produced, and in 2020 50% of all drugs on the Russian market will be domestic. <…> As a result, instead of an abundance of domestic drugs, we have received a complete disappearance of dozens of names – and not only in oncology. ”
Criticism of this rule really sounds in almost all interviews, open letters and other speeches of doctors and representatives of non-profit organizations when it comes to drug shortages. For example, 27 charitable foundations and patient organizations write about this in detail in an open letter published in October 2020. “The imperfection of the system of state regulation of the pharmaceutical market, including the“ extra third ”law and the rules for the formation of prices for medicines, has already led to the partial or complete withdrawal from Russia of a number of drugs, both domestic and foreign, and this withdrawal is not compensated by new drugs and suppliers. “, The letter says.
Exceptions to the “third extra” rule after big scandals were introduced only in September 2020. There are now 10 drugs on the exclusion list, mainly for the treatment of cancer. But in a letter from 27 charitable foundations and patient organizations, these measures are called “insufficient and belated”, because, for example, due to the policy pursued, “there is actually only one manufacturer in the country supplying vincristine to the market, Naukoprofi (Vincristin-RONC “). This enterprise produces 13 injectable drugs of the entire oncological line for adults and children and is not able to cover all the need of Russian clinics for vincristine. “
In addition to the list of 10 exceptions, there is another way that theoretically makes it possible to bypass the “third extra” rule – a list of drugs that can be purchased by trade name. That is, those, the impossibility of replacing which has been proven, even if there is something similar on the market. True, over the eight years of this government decree, the list has not been created, and such purchases can be carried out only for specific patients after the decision of the medical commission, that is, not at all massively.
Even some departments consider the “third extra” rule not very reasonable. In response to an open letter from non-profit organizations, the Federal Antimonopoly Service (FAS) wrote that it was ready to continue working “in this direction in order to abolish the ‘third extra’ mechanism for vital and essential drugs.”
The production of drugs on the territory of Russia could have prevented the shortage of drugs, which should have been facilitated by the “third excess” rule. But in practice this did not happen.
Why is production in Russia important?
Reason number 3: “Our bureaucracy is thoughtless, demands can contradict each other”
In Russia, as Ravil Niyazov, a specialist in the development and regulation of drugs at the Scientific Consulting Center, says, there are also quite a few regulatory barriers. “These are primarily excessive registration requirements, despite the needs of healthcare,” Niyazov explained in a speech at a press conference at PBN H + K Strategies. – Some of our requirements are protectionist and provide protection for domestic producers. <…> These measures are effective even when there are no domestic producers. At the same time, it is overlooked that early entry into the market of new foreign drugs would contribute to the earlier appearance of domestic analogues. “
At a press conference and in a conversation with Meduza, Niyazov gave several examples. “If you look at the European Union or US system, there will be much more bureaucracy,” Niyazov explains in a telephone conversation. – But all this bureaucracy is understandable and logical. It is absolutely walkable and doable, although it takes effort. And our bureaucracy is thoughtless, demands can contradict each other, and there is a lot of that. “
For example, it is necessary to conduct additional clinical trials in Russia . “We have this incomprehensible demand,” says Ravil Niyazov. “Although it exists abroad, for example, in Japan, South Korea, India, they do not just say:“ Do at least some research ”. There, a scientific basis for this is summed up: “You spent on whites, and we are Asians, there may be biological differences between us (for example, other doses may be required) or cultural differences (for example, in terms of prescribing practices).” We have no requirements for patients, nothing – “just swipe”. It is often ignored that most of the problems that now arise before us have long been worked out before us, and quite adequate methods for their solution have been proposed . “
According to pharmaceutical companies, difficulties in 2020 also arose due to the introduction of the so-called labeling. Its essence lies in the fact that now a certain code must be applied to each package of a medicine, which helps to track the passage of a particular package from the manufacturer to the final consumer. It took several years to prepare for the introduction of marking in Russia, but they did not have time to prepare everything. The new requirements became mandatory in July 2020, and already in October, foreign companies announced that they would not be able to deliver about 40 million packages of 450 drugs on time. Subsequently, however, the requirements were temporarily relaxed .WHAT’S WRONG WITH THE LABELING
Another regulatory problem that Ravil Niyazov talks about a lot is the fact that Russian laboratories that test drugs before registration do not follow generally accepted approaches to ensuring the quality and reliability of laboratory tests. As a result, high-quality drugs do not enter the market.
“Often, using the simple methods that our laboratories possess, it is difficult to assess the complexity of a medicine, which leads to the implementation of the mechanism of action,” Ravil Niyazov explains. “But even such simple methods sometimes cause great difficulties in domestic laboratories, which ultimately suffers the Russian patient.” As an illustration, the expert cites the registration history of the drug ipilimumab (“Ervoy”). It was filed for registration in Russia in 2011 and was applied for registration in the United States and the European Union at about the same time. In 2011, it was registered in the US and the EU.… “And in our country, due to problems at the stage of laboratory examination (the laboratory was unable to correctly implement the methods), companies were not allowed to register the drug, unreasonably considering it to be of poor quality,” Niyazov says. – As a result, ipilimumab could not enter the Russian market for five years – its registration was approved only in 2016. Thousands of people with melanoma received less than a highly effective drug, and domestic companies with a long delay were able to start developing biosimilars. On the one hand, non-compliance with the requirements for laboratory tests of drugs does not allow full confidence in the results obtained, and on the other hand, it leads to big problems for companies that want to bring the drug to the market, and ultimately for patients. “
Since 2021, Russia has completely switched to registration procedures developed at the level of the Eurasian Economic Union. “These procedures were designed to modernize bureaucratic processes,” says Ravil Niyazov. – However, the introduction of new adequate requirements is not accompanied by the abolition of old, non-working and interfering ones. In addition, the so-called regulatory guillotine , conceived to reduce unnecessary unreasonable requirements, has been formally implemented in the field of drugs. The most outdated, most interfering and not making an additional contribution to ensuring the safety, efficiency and quality of the procedure have not been canceled, and somewhere even worsened. “
The history with vaccines, which also periodically become unavailable, is slightly different from the history with other drugs. In addition to all of the above, several other circumstances affect their availability. Probably the strangest thing is that, as the author of the blog “About vaccinations without hysterics” and co-founder of the autonomous non-profit organization “Collective immunity” Elena Savinova writes, doctors and other employees of the institution may simply not know about the presence of a vaccine in the clinic and therefore do not prescribe her, even when patients or their parents take the initiative themselves.LIKE THIS?
At the same time, it happens that it is in state polyclinics that vaccines become more affordable than in private ones. This is due to the fact that the production of some foreign vaccines is fully or partially transferred to Russia and therefore the state began to purchase them. “Previously, [such vaccines] were relatively easy to find in commercial clinics,” Elena Savinova said in a telephone conversation with Meduza. – Now a significant part of them is bought by the state. Therefore, it happens that commercial clinics get leftovers, and those people who are used to being vaccinated in commercial clinics may think that there are fewer vaccines.
Reason number 4: “Due to the current epidemiological situation”
The pandemic has also seriously impacted the availability of some drugs. Hydroxychloroquine, which has been tried for covid, has been publicly labeled as a malaria drug. However, in Russia (as in other countries where malaria is rare), it is mainly used for rheumatic diseases: for example, rheumatoid arthritis and systemic lupus erythematosus. Without sufficient results from studies of hydroxychloroquine for the prevention and treatment of covid, it was one of the first to be called a cure for this disease; since March 2020, it has been included in the guidelines of the Ministry of Health and remains there to this day . (The rest of the world has abandoned its usedue to the danger and low potential effectiveness in covid.) As a result, in 2020, hydroxychloroquine disappeared from pharmacies in Russia , where, in theory, it should have been dispensed by prescription.
HERE’S WHAT TO DO IF YOU GET COVID
- What if you have a covid, but the doctor does not come and the ambulance does not come? Can I be treated at home?
There were also problems with the availability of other drugs for the treatment of rheumatic diseases, according to non-profit organizations, also because they are used in the treatment of covid.
During the pandemic, problems also arose with the availability of immunoglobulins . “We currently have 20 patients with problems in dispensing a drug in our work,” Maria Posadkova, head of the legal service of the Sunflower Charitable Foundation for Children and Adults with Immune Disorders, tells Meduza in a written commentary. “Regional ministries of health do not deny that our wards have the rights and, at the same time, very often use the following wording about the lack of procurement of drugs:“ due to the current epidemiological situation, ”which, of course, violates the current legislation. One of the manufacturers of immunoglobulins, the biopharmaceutical company CSL Behring, said in Decemberthat “the global pandemic has impacted the [donor] collection of plasma required for the production of immunoglobulins. The current shortage of plasma collection is likely to affect the supply of IVIG drugs in the coming months. ” CSL Behring explained to Meduza that there is a CSL Plasma division that collects plasma through an international network of donor centers, and, if necessary, uses plasma obtained from external sources.
Problems also arose in those patients who receive medications in hospitals or by decision of the medical commission. “The medical commission is usually held at the regional rheumatological center,” explains Polina Pchelnikova, vice-president of the Russian Rheumatology Association “Nadezhda”. – If suddenly this regional rheumatological center is re-profiled to covid, or the doctors went to work in the covid department, or the doctors just fell ill – this also happens – then, accordingly, the medical commission stops working, in the absence of the conclusion of the medical commission, the patient does not receive a prescription further, accordingly, he is not receiving a vital drug. Depending on the region, the financing of drug provision is arranged differently, and in a number of regions such a structure has developed, that expensive drugs are provided at the expense of compulsory medical insurance, that is, through hospitalization in a hospital. Now, if the hospital is closed, then the person cannot receive his injection. Moreover, even if the hospital is open, in a pandemic, regular trips to the hospital are associated with the risk of coronavirus infection. “
HOW ANTIBIOTICS DISAPPEARED DUE TO CORONAVIRUS
- “Disappeared drugs that were prescribed in tons with covid” There is a shortage of antibiotics and other drugs that are treated for COVID-19 in Russian pharmacies due to the pandemic and problems with labeling
What can you do about it?
“Patients start looking for medicines by friends, acquaintances, other clinics, doctors”
For patients with Wilson-Konovalov’s disease, the news of the termination of the supply of “Cuprenil” became particularly frightening at the end of 2020 due to the pandemic. “[During the deficits of the past years] we got out in a fairly simple way. We just traveled to Ukraine or Belarus and bought Kuprenil there, – explains Viktoria Ryzhkova. – You can buy it there without any problems [despite the fact that it is prescription]. Also, when Kuprenil disappeared in 2015, my friends in Europe just went to the doctors, asked for a prescription, because they said that in Russia patients die without pills. The doctors went forward. This year, when Kuprenil began to disappear, it was problematic because the borders are closed. ” Ekaterina Shergova, director of the Podari Zhizn charitable foundation for helping children with hematologic and other serious diseases, says that medicines from abroad are usually obtained not only through relatives and friends, but also “through virtually semi-clandestine supplies from abroad.” According to representatives of patient organizations and charities, before the pandemic, it was a common practice to bring medicines from abroad. Also, as tells and writes Elena Savinova, people can specially travel abroad in order to get vaccinated with something that is not in Russia. Or combine vaccinations, for example, with vacation. In 2020, according to Savinova, people were vaccinated where they were allowed to, for example, in Turkey.
According to Viktoria Ryzhkova, patients, among other things, shared and share with each other surplus drugs. According to Polina Pchelnikova, rheumatological patients often do the same in the corresponding groups in social networks, giving away drugs that they no longer need for free. At the sites of Revmofactor, a project of the Russian Rheumatological Association Nadezhda, the sale of any medications or other goods from hands is strictly prohibited. Self-help kits are a popular practice among patients. “My life reminds me of the film “ Dallas Buyers Club ” , only in a Russian-language way, ” activist Ksenia Shchenina told in 2020 in an interview to the AIDS.CENTER website. – I have a project – TB-a mutual aid kit. They send us medicines, who have them after the treatment, someone buys them himself. It is free of charge, the person pays only postage. “
Mikhail Laskov, an oncologist, founder of the Clinic of Dr. Laskov, says that if a drug disappears in the middle of the course of treatment, it has to be replaced with something similar from the same group of drugs. If this cannot be done, then patients begin to look for medicines from friends, acquaintances, other clinics, doctors. But this is not a safe practice. “It happens that people do not follow the cold chain, they bring the drug in a hard lump, ”Laskov says in a telephone conversation with Meduza. – And it is clear that it is impossible to inject in the clinic any drugs brought by patients, despite the fact that so many do so. But when you [in a situation of scarcity] bring what you have collected from friends, you are faced with a choice of two bad decisions. In this case, I assess my risks and make a decision. ” The concern of doctors in such a situation is due to the fact that the drug may turn out to be of poor quality, and in Russia the provision of “low-quality services” is a reason to bring the doctor to criminal responsibility.
But it happens that things are really not so bad
YOU JUST NEED TO SEARCH WELL
Another option, if there is no drug at all, is to import a medicine that is not registered in Russia with the help of a charitable foundation or friends. Since April 2020, in some cases, it is possible to import medicines not only for personal use, as it was before – the legislation allows the import of unregistered medicines even with the purpose of transferring them to someone. Such drugs are needed if, for example, they can replace in the treatment regimen the drug that is registered but is in short supply. Elena Gracheva, member of the board of the AdVita charity foundation for cancer patients, describes the procedure for doctors and patients who want to receive help from the foundation:
- “The doctors of the clinic, where the patient is being treated, gather a consultation, obtain informed consent from the patient for treatment with unregistered drugs, and request permission to use unregistered drugs from the Ministry of Health. A response is usually received within five business days.
- With all the extracts, the patient or the attending physician applies to the fund with a request to pay for the medicines and arrange delivery.
- The Foundation considers the appeal, and if there is an opportunity to help, it starts working with its partners abroad or in Russia (it depends on the drug). Under a tripartite agreement, the fund pays for the medicine through the pharmacy, and it goes to the clinic for the patient. “
“I saw directly the birth of a civil society”
According to Viktoria Ryzhkova, when Teva announced its decision to withdraw Kuprenil and a number of other drugs from the market, people with Wilson-Konovalov’s disease suddenly began to be active. “When Kuprenil disappeared the last time, the patients behaved very passively, they said: ‘We will not say anything. It would not be worse, “- recalls Victoria. – This time I saw the emergence of a civil society directly. They began to write: “Vika, what should we do, what applications should we write, look at my application, where to send it?” I saw that they themselves are ready to fight for their health. ” Ryzhkova estimated that about 180 people called and wrote to the Federal Antimonopoly Service (FAS), the prosecutor’s office, the presidential administration, the Ministry of Health, regional departments and ministries of health and other authorities.
In December 2020, a month after the announcement of the termination of sales, Teva announced that it had reached an agreement with the Ministry of Health on the maximum selling price and was leaving Kuprenil on the market. Victoria believes that without a public outcry, the Ministry of Health and the FAS would not agree to a price increase.
Polina Pchelnikova is also convinced that official appeals to the Ministry of Health, public letters and media interviews are one of the main ways to change the situation if there is a shortage of a drug. Pchelnikova admits that she cannot prove a causal relationship here, but after public outcry, the situation does change periodically. “I am inclined to believe that it is still important,” says Polina Pchelnikova. “It’s one thing when the Ministry of Health sees that only pharmaceutical companies need it … And to compare with the situation when the Ministry of Health sees that not only pharmaceutical companies, but also patient organizations need it, then this is a completely different structure.”
Similar comments were made to Meduza by Ekaterina Shergova, director of the Give Life Foundation, and Elena Gracheva, board member of the AdVita Foundation.
Indeed, there are cases when, after a long outrage from the public, the government allocated money for the purchase of scarce drugs. But such purchases cannot be called systemic. At the same time, to the above-mentioned letter from 27 charitable foundations and patient organizations about the shortage of 26 drugs for the treatment of cancer (the letter was signed by both Give Life and AdVita), the Ministry of Health in its first reply said that there was no shortage . True, then he admitted the shortage of two drugs: vincristine and etoposide (according to Elena Gracheva, they are included in the treatment protocols for dozens of diseases and the issue with them was very acute).
“Nobody is responsible for the fact that the country has a sufficient number of medicines”
When a drug is in short supply, patients often try to contact the pharmaceutical company to understand the prospects. But there can be problems. “In fact, a pharmaceutical company is a huge bureaucratic machine, and it is often impossible to find a person there who knows something,” says oncologist Mikhail Laskov. “It’s also part of the job to try to figure out [when the drug will be back on the market], but you can’t count on that. They were told: will be delivered in a month – but how to check? And the day before the end of the month it may turn out that they will not be delivered. And you cannot count on this in your work. “
Victoria Ryzhkova’s experience is similar: she says that Teva may not respond to her inquiries for months, that for reliability it is better to contact the head office in Israel, that the company does not have a person to whom patients could come with questions immediately, and the press – the service issues false information.
Victoria Ryzhkova, together with other patients, has been communicating with pharmaceutical companies for two years in order to persuade them to come to Russia with drugs that are alternative to “Cuprenil”. So that patients have options. But the Ministry of Health could have shown such activity. “This is an absolutely civilized dialogue: the state needs something, it came, asked and said that it was creating the appropriate conditions,” says Ravil Niyazov.
There is a shortage of drugs in many other countriesif not all. This is inevitable, but the question is who and how is engaged in its prevention and elimination. Ideally, this should not be resolved by open letters from patients and a media scandal. Moreover, patients are not always ready to speak. “For example, a patient came to the office yesterday, there is no medicine in a private pharmacy, they refused to issue medicine in the district clinic,” says Polina Pchelnikova. – I explain that you need to write a written appeal to the Ministry of Health of your region. “No, I will not write this, because then I will quarrel with my polyclinic.” On the one hand, a person turns up and says that he has a problem. On the other hand, when it turns out that the solution to this problem is connected with the fact that you need to put your signature and inform the higher authorities about your problem, then there are already fewer people willing to do it. ” Moreover, it is knownthe risk of involvement of vital organs and systems increases . Despite this, the refusal of patients to act even in the face of the threat of deteriorating health, according to representatives of non-profit organizations, is quite typical.
“Ultimately, everything depends, of course, on the state and pharmaceutical companies, to what extent they can agree,” says Ekaterina Shergova, director of the Give Life Foundation. “But we are deeply convinced that the country has everything necessary to address the issues of providing its citizens with any drug. In our opinion, there are enough resources and mechanisms in the country to create such a system of drug supply so that sick people, including children, would never face the problem that the necessary medicine is not available. “BUT PROBLEMS KEEP POPPING UP
No money, no need to go here How patients and doctors fight for access to medicines not registered in Russia. And officials try to refuse them
2 years ago
The European Union and the United States have recently had special working groups that study what are the main causes of deficits, try to solve these problems, as well as monitor deficits and make recommendations on how to convey information about problems with the availability of medicines to people.
There is no group in Russia that would analyze the situation and formulate decisions. “The drug crisis has revealed one simple thing: no one is responsible for the fact that the country has enough drugs,” writes Elena Gracheva. – The Ministry of Health cannot influence production and prices. The Ministry of Industry and Trade has no idea how many drugs patients need, and no Ministry of Health can give him any assignment. FAS, having incorrectly calculated profitability, can provoke the termination of unprofitable production, and there is no mechanism for appealing its decisions. Unfortunately, as long as the final decisions will not remain with the Ministry of Health, and the main task will not be the quality and continuation of people’s lives, nothing will fundamentally change. “
The All-Russian Union of Patients and other non-profit organizations in their open letters propose specific measures to change the situation: for example, to increase funding for the procurement of medicines (this is precisely why many problems arise ), to organize monitoring of the availability of medicines, to change the system of public procurement of medicines so, so that it gets out of the “third excess” rule and additional purchases could be carried out quickly.
However, in response to one of these letters , which spoke of the shortage of drugs for the treatment of cancer, the Ministry of Health said that the necessary measures had already been taken . Nevertheless, non-profit organizations believe that these measures are not enough or they do not work.
“Failures in drug supply are the result of numerous actions of numerous participants in the process, and no one has really begun to fix all these processes,” writes Elena Gracheva. – It is necessary to make changes in dozens of legislative acts and orders of dozens of departments, you are tortured to list. But the main problem is goal-setting: while we see that decisions are made for reasons of politics or economics, and not to protect people’s health. “