Sorry, We Have No Medicine
Alfia Maksutova
Takie Dela
November 24, 2016
What doctors and officials do to avoid giving patients the free drugs they have coming to them
“You’re not ill.”
“You don’t have that.”
“You don’t need that drug.”
“You need that drug, but a cheaper substitute will also do.”
“You need the drug, but we’re out of it, so you’ll have to wait.”
This is how doctors and officials respond to thousands of people who, by law, are supposed to receive subsidized medicines. They trick them. They know these people are ill, and they know what drugs they need. According to rough estimates, however, the state now lacks 45 billion rubles for providing drugs to the populace. In certain regions, only 10% of applicants can be supplied with subsidized medicines. Officials and doctors turn down patients in such a way that it is as difficult as possible to prove they have broken the law. The Health Ministry and the health care regulator Rosdravnadzor regularly report that things are stable when it comes to preferential drug provision in Russia. The figures underpinning the reports bear no relation to reality. The true scale and brutality of the war between patients and the state is striking.
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“Every time, they say, ‘Sorry, we have no medicine. There is nothing we can do about it.’ But by law I am supposed to get them. If they are out of them today, the state should purchase them tomorrow. Isn’t that right?”
Veronika has repeated the question over and over, but her voice still sounds surprised. When she speaks, her hands, with their long, elegant fingers, tremble slightly, as if they too are incapable of coping with the surprise. She has used hormonal inhalers for fifteen years. Without them, she cannot breathe. She has asthma, a host of related ailments, and official status as a disabled person. She is entitled to get the necessary dose at the pharmacy for free, but the medicine has not been issued for a year and a half now.
“It was always given out intermittently,” says Veronika. “You had to find out ahead of time the day when the drug would show up and run to the clinic when it opened to be in time to get it. If you were late, they would tell you they had run out, and it was your problem. But it was only last year I had to deal with the medicine not being available for months at a time.”
Then, after waiting six months, Veronika first turned to the Moscow Health Department for help. It was enough to file an application and the inhaler, which the pharmacy did not have in stock in the morning, turned up in the evening. But the magical effect of phoning the health department did not last long. A couple of months later, the drug was once again no longer available. When Veronika called the health department this time, she was told the situation was complicated. She could file an application, but no one knew when the drugs would arrive. The same day, the pharmacy called her and said her request was pointless: the drugs would not be available. Currently, relatives have been paying for her inhalers to the tune of several thousand rubles a month. According to Veronika, many of the people queued up to see the pulmonologist could not afford to pay this amount. The phrase “we are out of drugs” is tantamount a death sentence to them.
Veronika’s case is one of thousands. It suffices to peruse the regional press for the past month to read a dozen such stories. In Mordovia, the pharmacies not only have no prednisolone for patients entitled to the free drugs benefits, but no iodine or bandages, either. In Oryol Region, a woman suffering from lymphoma managed to get medicine only after local media wrote about her case. In Khakassia, the Audit Chamber will be investigating the problems with subsidized medicines due to the large numbers of complaints by patients. Organizations involved in protecting patients’ rights talk constantly about the growing number of pleas for help. The Movement against Cancer, for example, has noted an uptick. In September of this year, there had been so many cases of cancer patients turned down for subsidized drugs that the Prosecutor General’s Office investigated legal violations in a number of regions. According to online monitoring data for September 2016, done by Alexander Saversky, head of the League of Patients, over 80% of those surveyed had trouble obtaining subsidized drugs. Only 35% of those people had managed to get a prescription for the drugs in question without problems. Similar figures were adduced in a survey done last year by the Russian People’s Front: half of the patients surveyed were not issued the medicines they requested on time.
A 2016 government report stated the subsidized drugs provision program was suffering a shortfall of 45 billion rubles [approx. 660 million euros]. This was no surprise. The standard cost per person receiving free drugs has dropped from 849 rubles a month, in 2011, to 758 rubles, in 2016. According to Rosstat, however, the price of drugs has increased this year by 24%. In 2015, the government allocated an additional 16 billion rubles to alleviate the situation, but, unexpectedly, they were not used. The Health Ministry has said that all necessary drugs have been purchased. Roszdravnadzor regularly monitors the supply of drugs nationwide and has remained satisfied with its results. According to the reports issued by these agencies, around 98% of beneficiaries in Moscow Region, for example, receive their drugs, and the situation in other regions is stable. The Health Ministry’s ability to force public health officials to bend reality for reporting purposes has amazed even the president.
We Can Do Things the Hard Way
Veronika waited for the drug several months before once again aggressively calling the health department and asking questions. Ultimately, she was told that since the head physician at her health clinic was responsible for issuing drugs, in the future she should contact him. However, he called her himself and suggested she undergo additional tests and consult with different doctors at the clinic. It would probably turn out she really had no need for the medicine. At that point, Veronika felt petrified. Over the past fifteen years, she had tried nearly every drug available, and for several years this drug had been the most effective. The prescription had been confirmed on several occasions by both GPs and pulmonologists.
“Suddenly, during appointments, the doctors hinted in a rather roundabout but quite transparent way that if I demanded the drug, they might review my medical chart altogether. One day I breathed poorly, the next day a bit better: they just had to catch the right moment for tests. It might turn out that I was not so ill, either, and had no need to be registered as disabled. The current task was to reduce the number of disabled people in Russia. Then there would be no drugs, much less pensions. I was scared. I couldn’t work. What would I live on?”
Veronika refused to be tested and has resolved to go to the clinic only in extreme cases. She periodically calls the pharmacy and asks whether they have the drug. Lately, she has not been told the drug is unavailabe, but that she should just call the next day.
Suggesting the patient undergo additional tests to confirm that the subsidized drug is necessary is one of the most frequently used hidden methods to postpone issuing the drug or avoid issuing it altogether. Doctors and special medical commissions can almost always question the diagnoses their colleagues make and the treatments they prescribe. In this case, the drug is not recommended for a patient’s treatment, and there is no need to write out a prescription for it, which matters. The regions report to Roszdravnadzor on the basis of actual prescriptions issued. If a prescription has not been issued, it means no one needed the particular drug. A recent official study showed, for example, that in most regions deferred prescriptions (meaning prescriptions issued but not used) were less than 0.1%. It is statistics like this that enable the Health Ministry to report that everyone has all the drugs they need. In fact, the figure is meaningless.
Too Early or Too Late
Questioning a diagnosis is harder in cases when patients have rapidly progressing, potentially fatal diseases like cancer. All patients in Russia diagnosed with such diseases are supposed to get free medicines. If a person has disabled status, the the federal budget pays for the drugs; if he or she does not have it, the regional budget pays for them. But anticancer drugs, especially targeted therapies, are very expensive. It is not a matter of the five or ten thousand rubles required to treat asthma and diabetes patients, but hundreds of thousands of rubles. Artificial barriers spring up in the way of patients. A variety of means for turning down patients show up in the hundreds of appeals made to the Movement against Cancer. Physicians persuade people that a cheaper drug will work, that to get a drug they need to be registered as disabled, that they will have to wait for several years. They are told a drug is available only in Moscow or, on the contrary, that a diagnosis by Moscow oncologists means nothing in their home region. Doctors and officials try and prove to them they have to take a number, get on a special list or wait till October of next year, when their region will requisition the drugs.
Cancer progresses in stages. In the first stage, the disease can be completely cured. But when they request medicine in the first stage of their illness, people often are told that high-tech drugs are indicated only at later stages. They are not dying and can wait. When a person waits too long and presents with final stage cancer, he or she might well be told, “What’s the point of wasting medicine on you. You’re already dying.” This is how budget funds are stretched out.
“This is how it goes. ‘We keep telling you to come back tomorrow, and you keep showing up today.’ The tools for humiliating patients have been polished to a shine. The calculation is simple: a person comes and comes, and then gets tired and dies. When a person is dead, he’s not a problem,” comments Nikolai Dronov, chair of the Movement against Cancer’s executive committee. “Meanwhile, the state, by pretending it is saving money this way, is actually wasting funds that are scarce as it is for nothing. If you give someone a different drug than the one he was prescribed, or give him the right one, but only for part of his treatment, or split a dose for one patient and give it to two patients, people will not get well. They will not be able to work, and they will certainly go on disability. It’s a very dubious way of saving money.”
Since its inception, the Movement against Cancer has received over 250,000 calls on its hotline. The huge numbers of cases in which patients have been refused treatment are hard to ignore, and the Prosecutor General’s Office periodically carries out inspections based on the complaints filed by cancer patients. It identifies certain violations, and officials caught in the heat of the moment are subjected to disciplinary measures. Generally, the prosecutor’s office concludes that regional authorities miscalculated the necessary amount of medical care and provisions for financing it, note the lack of money (up to a billion rubles in some regions), and pass the information on to the Health Ministry. This is the entire outcome of the inspections. Obviously, at best, the people whose complaints instigated the inspection will get their medicine. Everyone else will have to wait until the next raid.
Give Them Something or Other
However, all the methods we have described for keeping a person from getting essential medicines, including refusing to write a prescription, are illegal. Thousands of people are involved in this illegal activity.
Nikolai Dronov describes it.
“It is a multi-step process. An official works at the health ministry in a remote region. He doesn’t have much money. But he does have ten thousand or so registered cancer patients and a whole bunch of diabetics, and rare diseases breathing down his neck, some kid, for example. Article 16 of the Law on Basic Healthcare obliges him to treat them. The hypothetical 100 rubles he has at his disposal has to be divvied up amongst everyone so that no one has their feelings hurt. But he doesn’t have enough money for everyone. He gradually shifts this tough moral choice onto the head physician, who thinks up a scheme for his own doctors so they select the patients who really, really need treatment badly and right now. They are followed by patients who also need treatment, patients who sort of need treatment, and those who can wait. Ultimately, we end up with high-profile patients and not-so-high-profile patients.”
Doctors are thus no less hostages of the system than patients are. The office of the head physician at one Moscow clinic recalls the film Bruce Almighty, in which the main character, who has temporarily become God, decides to record on post-it notes all the prayers he has received from people, and his entire house is instantly covered with post-it notes. Thick files, stacks of charts, and sheets of paper with surnames of patients fill the space. The doctor, who asked we not identify him or the number of his clinic, is palpably nervous.
“I am legally responsible for the provision of medicines. The health department refers complainants to me. But I cannot give them something that simply doesn’t exist. I have a problem to solve, but how can I solve it? I have to write a letter to the department, describing the situation and listing the medicines we lack. So I write the letter. Have a look at the latest file,” says the doctor. He scrolls through the pages for a long while. There is a number next to the name of each drug, standing for the missing quantities. The numbers are long. “And how does the department respond? They don’t respond at all. I have sent a dozen such files only in the last few months, but have not received a reply. Basically, the tension is growing. We don’t have enough medicines, not only because they are not purchased in sufficient quantities due to budget cuts, but also because a lot more people are asking for subsidized drugs. People who used to be able to buy medicines on their own, without coming to a clinic to get them, have remembered their benefits at a time when incomes have fallen sharply. When they are turned down, they come to me. They scream and throw things at me. I have mothers in here every day chewing me out. But it’s odd to be in charge when there is nothing you can do.”
A complaint against the head physician should still be filed with the prosecutor, argues Alexander Saversky, who is also a member of the Russian Federation Government Expert Council. The doctor would only have to show the court that he took all the necessary measures in his power, and responsibility would lie with his superiors, for example, the regional health ministers.
“It is obvious the system doesn’t work properly, and has to be dismantled by legal means,” says Saversky. “Changing it requires filing criminal charges against officials, instead of just cursing in the head physician’s office. We have done a great deal to get the prosecutor’s office to side with patients during trials. Nowadays, hundreds of cases are considered all over the country every year. But it’s not enough. Until officials face criminal penalties for refusing to issue medicines, the outcome will be meager. As for the arguments officials make about lacking resources, they have no legal basis: they are economic arguments. What does it means to say, ‘We don’t have the money’? My only response is: give me access to the budget, and I’ll find the money. What could be more important to the state than the lives of its citizens? What expenditures could have higher priority?”
Surpassing Norms
Choosing among patients is especially difficult when it is parents seeking drugs for their children who have severe rare diseases. Their treatment costs millions of rubles, and it is extremely hard for them to raise the money on their own or through charity foundations. So obtaining drugs for free is matter of their child’s life and death. On the other hand, the cost of such drugs often drains a region’s entire budget for subsidized drugs.
“The first things parents of severely ill children hear when they come to a clinic to get a very expensive subsidized drug is, ‘All the money will be spent on you. Do you have no pity for the others?'” says Svetlana Viktorova, an attorney with Patronus, a children’s human rights project. “Parents are constantly told about budget deficits and procurement times, that the region does not have that kind of money. This issue should not worry parents at all: they are legally entitled to receive the drugs. But not all parents are willing to go to court to defend that right.”
Two years ago, Viktorova helped the family of 13-year-old Alyosha, who has cystic fibrosis, win a court case. The boy was diagnosed when he was five months old. He has to take a number of drugs daily to have a normal life. During all this time, his parents had never once been able to get a full month’s worth of the drugs he needs without a hitch: something was out of stock every time. The big problems began in 2014, when Creon, an enzyme that makes it possible for children with cystic fibrosis to digest food, ceased being issued.
“You go into the pharmacy. They set aside the prescription to be filled later, but a month later the prescription is no longer valid, and the medicine has not come in. The next month, you bring them a new prescription, and the story repeats itself,” says Alyosha’s mother, Maria. “The pharmacy doesn’t explain a thing. The drug is not available, and that is that. I would write complaints to the pharmaceutical authority, the regional health ministry, and the Russian Health Ministry. I would get long replies giving me the run-around. ‘This month, your child has been supplied with such-and-such and such-and-such. The other drugs you have requested are currently unavailable. When they come into stock, they will be issued. As it is, you have been supplied with drugs in such-and-such amount’—20,000 or 100,000 rubles, depending on the month—’whereas the norm per person is approximately 600 rubles.'”
After being turned down several months, Maria filed a complaint with the prosecutor’s office. They could find no grounds for a court case, writing that Creon was absent from routine requisitions, and they had informed the Health Ministry. It was then that Maria turned for help to the charity Rusfond, where Viktorova helped her draw up a lawsuit. Maria asked to be compensated for the cost of the drugs she had bought with her own money and supply her with the drugs in the future.
“Right away the judge said, ‘I can oblige them to compensate you for the costs of the drugs you bought yourself, but I cannot oblige them to issue you the drugs, since by law they are supposed to do this as it is. And what’s the big deal? After all, you’re not only ones who are not issued drugs. Diabetics, for example, have the same problem.”
Nevertheless, she wrote about these obligations in her decision, and Maria was able to get Creon.
However, besides Creon, with which Alyosha is now always supplied, none of the other medicines he needs are issued consistently. Maria files complaints with various authorities every month. Previously, officials would reply to her complaints, and the problem would be solved in many cases. In recent months, the letter writing has become pointless: she has not received a single response from the Health Ministry and the pharmaceutical authority.
Systemic Chaos
Maria admits she filed suit and won her trial only thanks to the support of a competent lawyer. Generally, such assistance in the fight to obtain medicines is provided by patients’ organizations, nonprofits protecting the rights and interests of people with particular ailments. Many of them have won several dozen cases: the legal precedents in such cases in Russia are impressive. Aside from assistance with drafting legal documents, these organizations work with patients to do blanket mailings to the various authorities. Sometimes, it is enough to send off several legally competent complaints, and the case might not even go to trial. If a drug is needed urgently, patients’ organizations help in raising the money to buy it.
The value of the dozens of patients’ organizations to patients themselves is indisputable. But if you think about it, their principal function—helping people force the state to give them the benefits owed to them—seems odd. If they are unable to do this, they collect donations from people to obtain these same benefits, although these same people have already paid for them through their taxes. At the same time, tens of billions of rubles are still poured into the state system of subsidized drugs provision. The government has identified this sector of social benefits as a priority.
According to numerous experts, the main problem is not that the system is poorly funded, but that it is organized ineffectively. Its roots go back to 2005, when all Russians who had the right to received subsidized drugs were divided into federal and regional beneficiaries. Crudely, the first group consists of war and combat veterans, disabled adults, and disabled children. Additionally, the benefit is provided to mothers of many children and children under the age of three. Each region defines the make-up of the second group. Drugs are requisitioned for these groups from different budgets, the federal budget and the regional budgets.
Literally, since this division was introduced, regional beneficiaries have faced difficulties. The vast majority of Russia’s regions are subsidized by the federal government, and regional budgets lacked the money to purchase even the most modest list of drugs, and they still do. The lists of ailments and subsidized drugs vary greatly from one region to the next. The amount of drugs ordered and consumed is not regulated. To cope with the strain on their budgets, the regions have prescribed limits on the purchase of drugs. Despite the fact that this solution has been applied ubiquitously, it still has no basis in law.
In practice, this means that if a person has asthma or diabetes, but has not registered as disabled, he or she must try and obtain drugs paid for from the regional budget. This is a where a number of issues arise. The medicine prescribed to such patients may not be included in the regionally approved list, or all packages of the drug acquired for the year have been given out, or the drug was not purchased because there was not enough money. Regional beneficiaries are subject to the principle “we give out what we bought,” not “we purchase what patients need.”
“A clear and comprehensible model of pharmaceutical benefits is simply lacking,” explains Saversky. “The system is regulated by a whole bunch of regulations and laws. In recent years, a number of lists of subsidized drugs have been issued, but they have not been coordinated with each other, and the same benefit is often duplicated. For example, a person is disabled. He or she has the right to receive free medicines as paid by the federal budget. At the same time, his or her treatment is paid for by the regional budget. In this case, many patients turn down the federal benefit in exchange for a cash payment, and then they get the medicine as a regional benefit. You end up with a double burden on the budget. Actually, immediately after the additional pharmaceutical assistance program was introduced, the number of disabled people in Russian shot up. Under the program, it was possible to get medicine, but you had to register as disabled. So a huge number of people (one or two million out of a total of thirteen million) received disability status in order to get drugs. So now the state pays for their drugs, and every month it pays them a disability pension. That comes to around 150 billion rubles a year. The question arises: why not just supply everyone who needs them with drugs? Those people who decided to have themselves declared disabled for the drug benefit would no longer need this status. A savings on pensions of 150 billion rubles: that is the price of free prescription drugs for everyone in Russia. If you introduced it, if you gave people pills on time for free, the future savings—in terms of hospitals, sick leave, and ambulance visits—would be colossal. The number of days people work would increase, and, thus, the amount of taxes they paid.”
The Health Ministry spoke once again about free drugs for everyone in early November. In 2019, there are plans to include drug coverage in the compulsory medical insurance system. Presumably, this would cause an increase in premiums from 5.1% to 5.9%. This would provide the Compulsory Medical Insurance Fund (FOMS) with an additional 150 to 200 billion rubles.
“In fact, according to Laws No. 323 and 326, drugs are embedded in the healthcare standards, and those standards are the basis for calculating compulsory medical insurance rates. Moreover, Law No. 326 further emphasizes that medicines are included in the compulsory medical insurance rates. Meaning that our current insurance premiums already partly cover the cost of drugs. But FOMS claims it wants more money,” says Saversky.
It is likely that, with the introduction of drug insurance, the situation will shape up in the same way as with beneficiary drug coverage. People will pay more taxes. The Health Ministry’s reports will claim that the drugs purchased with this huge amount of money were received by everyone in a timely manner. In order to fill the reports with optimistic figures, doctors and officials will refuse patients drugs under various pretexts. In reality, patients will not be able to obtain drugs for months on end or they will not be issued them at all. They will complain, some people will die because they did not get their drugs, and the newspapers will publish sad stories. Reviews by the Audit Chamber and prosecutors will conclude that the program was insufficiently financed.
It Makes Everyone Angrier
Around six months after her first interview, Veronika suddenly called.
“They gave it to me! They gave me the inhaler!” Veronika nearly screamed into the phone. “I came to the clinic once, and routinely asked the doctor about it. She sighed and said, ‘You’ve asked so many times. Okay, it’s yours.’ She called somewhere and was immediately told there were no drugs. But she insisted. ‘No, I’m telling you to issue them. 120 doses at a dosage of 160 micrograms.’ I got the prescription and ran right to the pharmacy. There, however, I was given a lower dosage and only 60 doses. I said the doctor had prescribed something else, but they told me, ‘Say thanks we’re still giving it to you at all.’ I’m not going to file a lawsuit, of course. The country has no money for drugs, what can you do? It’s just a pity it makes everyone angrier.”
Alyona Guryeva, Alla Salkova, and Pavel Zakharova provided additional reporting.
Translated by the Russian Reader
The Russian Reader 