A pain epidemic

Why it’s easier for some cancer patients in Russia to kill themselves than get painkillers

In February 2015, in Moscow alone, 11 cancer patients committed suicide. Recently, at a meeting of the government’s Council on Guardianship, Deputy Prime Minister Olga Golodets said the public’s complaints about oncology and access to pain medication are aimed mostly at healthcare services in Moscow. Some basic measures have already been implemented: drug prescriptions are now valid for longer, and it’s become easier to get one. But members of Moscow’s city council say they don’t see the slightest reason to treat cancer patients any different from other patients. A year ago, after the suicide of a cancer-suffering rear admiral in the Russian Navy, the head of Moscow’s public health service said patients were killing themselves because of seasonal depression (the “spring blues”) that had nothing to do with problems obtaining medication or managing pain.

In a special report for Meduza, Katerina Gordeeva visited a cancer center to find out what Russian doctors are doing to help ease patients’ pain, and why it isn’t working.

Queuing for your life

“There’s no end to the pain. It won’t stop next morning, or tomorrow, or the day after. It won’t disappear if a tooth is pulled out or if drops of medicine are squeezed into your ear. If you don’t relieve the pain somehow, it eats you up right to the end. It’s absolutely unbearable,” Tanya explained, whispering.

In line outside the oncologist’s office with 14 other people, Tanya and her son, Maxim, wait to see the doctor, who will give them a diagnosis and a prescription. Maxim is five-years-old. Between a green plant, a windowsill gray from cracks, and the battered, old waiting room chairs, Maxim amuses himself, commanding an imaginary army. This isn’t the first time he and his mother have been here. People in line frown at the boy. A pallid-faced man can’t resist and says, “You should have left him at home. You know that, don’t you?”

Young children are a source of infection for older patients. They are dangerous for adults whose bodies have been weakened by cancer and chemotherapy. But Tanya has nobody to watch Maxim. Her mother, Maxim’s grandmother, is at work. And there is nobody else in the family.

Someone else in line also insists that Tanya leave with her son, but she pretends not to hear. In the twilight of the corridor outside the doctor's office, patients’ faces blend into the swamp-colored walls. It’s easy to pretend that you can’t distinguish between them.

The doctor sees a maximum of four patients per hour. So Tanya, who is now eighth in line, will have to put up with disapproving stares for another two hours. “Can you keep my place for me, please?” she asks Polina, the stout woman next to her. “I called my mom, and maybe she can come in time,” Tanya adds in a whisper. (By law, patients’ relatives can also pick up their painkiller prescriptions.) With a meaningful nod, Polina promises to keep Tanya’s place in line.

Polina’s sick husband is waiting for her at home. “Three weeks ago, when there were about ten people in line, a doctor came out and said, ‘What are you all waiting for? My office closes in 40 minutes and I’ll be able to see three of you, at most.’ There was a brief silence, then the arguments started and a fight broke out. Both the sick and the healthy were fighting to see the doctor, to lay their hands on that scrap of paper that gets them their painkillers. I left. I went home to my husband and cried. He’s so sick! But I couldn’t fight with them. I just couldn’t. Maybe someone needs it even more than we do. Everybody here needs it.”

Paulina has spent more than three years waiting in lines at cancer clinics. In the beginning, before he was diagnosed, her husband used to come with her. First it was the local clinic, then it was the regional oncological dispensary, and later they waited at the Kashirka (Russian Oncological Center) in Moscow. Paulina says the Kashirka’s line was the worst: “Some of the patients sit, looking around wide-eyed. These are the people who haven’t been diagnosed yet; they still have some hope. They’re restless. They fidget, as if they want to run away and escape. Others have already been told, and they’re in line looking for the best treatment. They discuss and compare different doctors, medicines, and rumored cures. And finally there are the people whose complexion has turned gray. Sometimes they’re even yellow. These are the ones in pain.”

The door opens. A tall young man exits the office, his pregnant wife leading him by the hand. She is tiny but her belly is huge. “What did he say?” asks someone from the line. “He gave it to us!” the pregnant woman beams. “He said he’ll even prescribe some morphine, if we need it."

“Well, God help you,” whispers an old lady in a yellow jacket and wig, crossing herself. And she gives the pregnant Lelia a paper crane she’s made, “for luck.” Peter, Lelia’s husband, has been battling cancer for several years: first came the illness, then remission, and now a relapse. The pain has come back. The line gazes at Lelia with sympathy and admiration. Hanging in the air is a question: who will do all this work for Peter’s painkillers while Lelia is giving birth and then nursing her baby? But no one dares ask out loud.

Getting a prescription

Russian federal law states, “Any patient is entitled to receive pain relief associated with the disease and (or) medical intervention with any available methods and drugs.” According to recommendations by the World Health Organization, as observed all over the world, anyone experiencing unbearable pain should be given pain relief within 2-3 hours, regardless of the time of day, day of the week, diagnosis, age, or other factors. When it comes to the availability of painkillers in European countries, Russia ranks 38th out of 42, according to the UN Commission on Narcotic Drugs. It can take up to three days for adults to get their medication; for children, the wait can last up to 12 days. (It can take even longer, when there’s a holiday.)

“It’s Murphy’s Law,” says the pallid man who was irritated earlier by little Maxim’s presence in line. “The pain is worst during the holidays. We’re a burden on everyone, as it is. During the holidays, it’s doubly true. I first fell ill when the whole country was singing and dancing. There were fireworks and music everywhere, and I wanted only one thing: to die. I thought about using my tie to hang myself.” The man is silent, then for some reason gives out a barely audible laugh, with an apologetic smile. “But I couldn’t do it. For me, those that manage to commit suicide are heroes, the ones who find the strength to do it. I couldn’t.” He turns away and rummages in his pockets, as if trying to find some material evidence of his own weakness.

Finding nothing, he faces me and continues, “You know, cancer pain paralyzes the will. It completely takes over, making it impossible to do anything. I remember the first time this happened to me: all I could do was lie with my hands buried under the cat, unable to move. How do these people find the strength even to stand? Think of the energy it takes to write a suicide note and prepare everything to kill yourself.”

“I’m against suicide,” says Polina. She looks down at a photo of her husband on her phone. In the picture, he’s wearing knee-high boots and holding a fishing rod. Today, he’s waiting at home, a 40-minute drive away, hoping Polina wins the battle for his painkillers.

Getting pain medication in Russia requires several steps:

1) You need an appointment with a general practitioner at your local clinic. (The doctors have no time for house calls.) The physician assesses your pain levels and sends you to an oncologist.

2) The oncologist’s office is often far from the local clinic. These doctors base their assessments on experience and knowledge that has little to do with patients’ pain or the findings of general practitioners.

3) You return to the general practitioner, who, based on the oncologist’s assessment, writes a prescription.

4) The head of the local clinic must stamp this prescription to make it valid.

5) By 4 p.m., clinics typically send to special pharmacies a list of all the patients who require narcotic painkillers. If you can’t get a prescription by this time, you’ll need to start over the next day. (The stamp on the prescription is valid for five days, after which the patient has to start over from the very first step listed above.)

7) You cannot get new painkillers without returning the used containers and packaging from your previous medication.

Behind the doors of their offices, as a line of people wait their turn, the oncologists try to diagnose what kind of pain patients are feeling: cutting, stabbing, shooting, burning, pulling, aching, dull, or sharp. These are international classifications. Stopping cancer pain requires just the right kind of medication. Throughout the world, pain is treated before it becomes unbearable. Not in Russia.

At the First Moscow Hospice, Russia’s flagship in the struggle for effective pain treatment, they say cancer sufferers who suddenly are fortunate enough to get proper medication will ask nurses to draw the curtains, turn off the lights, and “make everything quiet.” Adults who get pain relief usually just want to sleep. They’re afraid immediately, worrying that the pain will return, and that it will again be unbearable.

Kids are another story. Whatever their physical ailments, children receiving proper medication act as if nothing is out of the ordinary, playing games, throwing tantrums, or running off to watch cartoons. When it comes to kids with cancer, treating their pain is about returning them to a normal quality of life. With adults, it’s about easing their suffering.

Until the pain returns

Adults who have experienced the excruciating pain of cancer fear nothing more than its return. In line outside the oncologist’s office, most people are talking precisely about this. A gray-haired lady casually tells Polina about an old woman discharged last December, just before the holidays, from a hospital in the suburbs. She was suffering from terrible pain, the holidays were approaching, and the nearest oncologist able to write her a prescription was 70 kilometers (44 miles) away.

“This poor woman was so afraid of the pain coming back,” the woman whispered to Polina, “that she begged her relatives to carry her outside in nothing but her underwear and lay her on the snow. ‘Lay me down and wait. And then bring me back inside. I’ll get pneumonia and die.’” Polina looked back in horror. “And what did they do?” she asked. “They brought her out. They put her down. She got sick. And then she died,” the old woman answered. Then, for some reason, Polina said, “Our cat died on New Year’s. The veterinarians didn’t work, either.”

According to the Moscow Department of Health’s regulations, hospitals are not allowed to discharge patients who are exhibiting pain symptoms. Moscow’s regional clinics don’t obey this rule, however, and other regions don’t even have such a regulation. Sick people with chronic pain are discharged all the time without being prescribed any effective medication.

No Drugs

Since Soviet times, narcotic painkillers have been banned or deemed unnecessary in Russian medical practice. Patients using such medicine are treated like drug addicts and prescribing doctors are punished like criminals. Since Russia’s Federal Drug Control Service (FSKN) was created in the 2000s, doctors prescribing narcotic painkillers have been constantly at risk, thanks to an unmanageably long list of formalities and complicated procedures required to help anyone in pain. Throughout all this paperwork, the pain, of course, doesn’t wait.

In 2009, in Krasnoyarsk, Alevtina Horinyak, a doctor with half a century of experience, prescribed Tramadol to a patient who wasn’t formally in her care. In 2011, the FSKN took her into custody. A year later, prosecutors asked a court to sentence her to eight years in prison and fine her 15,000 rubles (about $500, at the time). In 2014, under pressure from the medical community and the public, Dr. Horinyak, now 73-years-old, was given a full pardon. But her prosecution established a precedent that still reverberates today.

Last December, another doctor in Krasnoyarsk refused to prescribe painkillers to Yana, five-year-old cancer patient, citing Horinyak’s case. “Do you want me to end up in prison, too?” the physician reportedly told the girl’s mother, Christine.

Agonizing pain suddenly gripped Yana on December 16, 2014. Her doctor prescribed four capsules of Tramadol, five tablets of Pentalgin, and doses of Noshpa, to be taken two or three times a day. It didn’t help. Yana screamed and screamed, and her mother Christina kept calling the health clinic, then the oncology center, and later the Ministry of Health. They said narcotics could only be administered at the hospital, but doctors at the pediatric oncology hospital only gave her a shot of Ketonal and sent her home, telling her to call an ambulance, if it got worse.

After getting home, Yana’s pain returned. Christina called for an ambulance, which had to fight its way through traffic. After arriving, paramedics gave Yana a shot and left. A few hours later, Yana’s pain returned again, so Christina called for an ambulance, which came again, repeating the whole process.

Next, Yana’s grandmother went to the children’s clinic, then the oncologist’s office, and later back to the clinic. Finally, at 7 p.m. on December 19, the family got a prescription for Promedol, a narcotic. By that time, the local pharmacy had been closed for two hours already, so Christine began dialing numbers in Moscow. Diana Nevzorova, a specialist in palliative care at the Russian Health Ministry (and the chief physician at the First Moscow Hospice), led an effort to help Yana. Nevzorova contacted higher-up officials in the Ministry of Health, who in turn called local authorities in Krasnoyarsk, but the situation still didn’t improve.

On December 21, a team of Moscow doctors flew to Krasnoyarsk. Together they managed to find and convince the regional commissioner for children’s rights of the need to administer narcotics. Somehow, it was precisely this man, the regional commissioner, who solved the problem. On December 23, poor Yana, still weeping from pain, finally got some morphine. The Moscow doctors showed their Krasnoyarsk colleagues how to administer the medicine using a pump (which also had to be brought from Moscow).

And so a five-year-old girl was left to suffer unbearable pain for seven days. Finally, after a week, Yana got morphine to ease her pain. On New Year’s Day, she died. Yana wasn’t in pain anymore.

***

A group created a few years ago by two charities is responsible for reporting Yana’s story, and dozens like it. Working closely with the Association of Professional Hospice Care, this group—the creation of staff at Vera (“Faith”) and Podari Zhizn (“Give a Life”)—flies activists all around Russia, helping local physicians understand modern medical approaches to relieving pain.

In this work, the group often finds itself aiding individual patients’ personal cases. Every time, they hear the same tired excuses from local health officials: “We don’t use narcotics. We use Tramal and Promedol.” The group tried to explain that one of these drugs is ineffective against worsening, acute pain, and the other is neurotoxic and actually quite dangerous in high doses. They’re afraid of prescribing morphine; it’s a narcotic, and people can be sent to jail for that.

Of course, there is no law prohibiting the prescription of narcotics to adults or children suffering from pain. But neither is there a law requiring doctors to do everything possible to ease a patient’s pain. And the law that permits is not as important as the one that forbids and threatens men with being sent to prison.

The balcony is closer than the clinic

According to the FKSN, about 80 tons of illegal drugs are trafficked every year in Russia, of which only 0.7 percent is used for medical purposes. As much as 60 percent of Russia’s drug trafficking cases, however, are against health workers, like Dr. Horinyak’s high-profile case in Krasnoyarsk. You hear her name often in line at health clinics. “Now there is a real doctor!” patients say.

“Horinyak took the Hippocratic Oath to heart,” a man named Fyodor says enthusiastically. “You know, they tell me doctors don’t even take the Oath anymore. Is that true?” he asks, before answering his own question. “Of course they don’t. They're just trying to save their own skins.”

Fyodor is in line for his father’s prescription. His mother could have come herself, but she’s afraid to leave his father, a reserve officer, alone in the house. “The balcony is closer than the clinic, and it’s easier to pull a trigger than to sit in this line,” Fyodor explains. His mother calls his mobile phone several times: “Tell them that last time the oncologist suggested Dyurogezik and the local physician prescribed Tramal, which doesn’t help. Tell him that it doesn’t help.” Fyodor nods and ends the call. "I can hear him screaming in pain,” he says of his father. “She's just sitting there with him. Can you imagine it?”

Though he woke up at 4 a.m. to come here, there are another four people waiting in line ahead of Fyodor to see the oncologist. Fyodor does his best to rest, leaning against the wall, but sleep doesn’t come easy here.

People in line are busy discussing the suicide of another retired officer. “Well, it’s good to have a gun,” another man says wistfully. He’s wearing a short, velvet jacket and, quite unusually for this place, one of his ears is pierced. “One bullet and it’s all over. Free at last. And you don’t have to wait in these lines anymore. No more humiliation, and no more pain. He died a hero. Everybody says so. Even the newspaper wrote about him.” Fyodor cracks his knuckles.

“He didn’t shoot himself, I think he hanged himself,” says a gray-haired woman. “It doesn’t matter,” the man with the pierced ear insists.

The first signs of pain

The number of reported suicides by cancer patients has been rising steadily, but nothing has resonated like the death of Rear Admiral Vyacheslav Apanasenko in 2014. His suicide note didn’t leave the slightest doubt as to why he shot himself. His last wish was that Russia reform its regulations on narcotic painkillers.

A new law on painkillers should enter force later this summer. It will bear the names of Rear Admiral Apanasenko and Dr. Horinyak. The law will bring about several important changes: painkiller prescriptions will be valid for 15 days, not five; patients won’t have to return empty containers to get new medication; and patients shouldn’t be discharged from the hospital, without first ensuring that they have enough painkillers at home.

Current laws don’t prohibit any of this, but they don’t enforce it, either. The new law, too, doesn’t define any specific penalties for failing to observe these future requirements.

***

“The day my wife was supposed to be discharged from the hospital,” Andrey tells me, “I went to the oncologist at 6:30 a.m., and was third in line. Within an hour, there were about 100 people waiting. That particular day, the district oncologist was seeing patients from 8:00 a.m. to 1:00 p.m., and I had an appointment for 9:20 a.m, but I didn’t have a referral from our local physician. Without one, a meeting with the oncologist made no sense, so I left the clinic and returned at 11:00 a.m., but our oncologist had left for surgery and was no longer accepting patients that day. Somehow, I managed to find a different doctor, but he said he didn’t have the right to prescribe my wife drugs while she was still in the hospital. In fact, however, there’s no law prohibiting drug prescriptions to patients about to be discharged from the hospital!”

Andrey isn’t bitter, he says, but he is exhausted by his wife’s illness and his efforts to understand in ordinary human terms the “logic” of Russia’s healthcare system. “It turns out that the patients discharged from the hospital have to scramble to get their medication, in a race with the onset of crippling pain. Getting a prescription, let alone actual painkillers, before being discharged from the hospital is impossible, though there’s no law against it,” he says.

I’m a doctor

In the year since Rear Admiral Apanasenko’s suicide, those campaigning to make pain relief more available in Russia still have their work cut out. The parliament has adopted new legislation on painkillers, and President Putin has signed it. Soon, the law will enter force, but its effectiveness remains unknown. Many of the rules are still discretionary: doctors can risk prescribing painkillers without collecting used containers, but it remains possible that this act and others like it could be regarded as criminal under certain circumstances.

***

Later in the afternoon, when the hospital waiting room is empty, the doctor finally comes out of his office. He is about fifty-years-old, gray-haired, and wearing glasses. He is an ordinary, nice-seeming man. He looks around, afraid his eyes might meet the glance of a patient lurking somewhere in the shadows. “You know, I was once attacked by a woman waiting for me after office hours. She jumped me, nearly laying into me with her fists, screaming that I’d killed her son. Like I’m what killed him?”

He’s afraid to give an interview, and refuses to disclose his name. “You see,” he says, “as a doctor I’m responsible for mistakes with appointments and for wrongly-written prescriptions, but I’m not responsible for the pain. And doctors can always say, ‘Well, you have this disease, and I’m sorry but pain is part of it. You’ll just have to wait it out.’”

Of course, the doctor sympathizes with each person waiting to see him. If he had the power, he says, he’d try to help and save everyone. “But I’m not Batman. My workday is over. And now I’m going home. I’ve got a family, and my son is finishing school. He has three tutors, and I’m the only breadwinner. If I prescribe some kind of narcotic out of the kindness of my heart, and someone decides to prove that it was a mistake—that I got carried away and in fact the patient wasn’t really suffering from unbearable pain—then I go to jail. Like a drug dealer, you know? Sometimes,” he continues, “some cases stay in my head for months. I see them in my dreams. But what can I do? I'm just a doctor. I only work here. Who I am is objective, but diagnosing pain is subjective. Do you understand?”

A doctor’s work today prescribing medications is structured in such a way that it’s enough to write in a patient’s medical records that “pain is not exhibited” or “pain is moderate.” Writing it this way keeps doctors out of trouble. “And all around there’s an enormous amount of pain,” the doctor says. “In fact, right now there’s something of a pain epidemic in this country. And I alone can’t stop it.”