In Russia, lung transplants have come to a virtual standstill, say patients waiting for surgery. Many of them cannot live without a constant supply of oxygen and live in isolation for months at a time for fear of contracting the coronavirus.
The reason for the delay in surgeries is that there is no approved drug in Russia for transporting donor lungs. “Actually, my life is completely dependent on the transplant right now, because it’s my only chance. I stay at home all the time. We don’t see our friends at all – only those who are cured or vaccinated. Because if I get COVID, I definitely won’t survive,” says Vlad Kisaeva. She is 34 years old, she has been living with cystic fibrosis all her life – it is a genetic pathology that causes, among other things, damage to the lungs and other respiratory organs.
Vlada is waiting for transplantation at the Shumakov Center of Transplantation and Artificial Organs – she was put on the waiting list in May 2020. “What happened was that when I went on the waiting list in May of last year, I was described as a pretty lively patient, as much as possible in our condition. They said, “We are very happy that you are currently stable, as much as we can make it now. And we believe that if you wait, everything will be fine. I went home and literally within a week I had severe bleeding. It looked something like this, I sat down at the table and spilled a puddle of blood,” Kisaeva told the BBC. Doctors then tried to adjust the girl’s treatment so that she would not bleed. But in December, the complication returned. “And the last episode of bleeding is now June 18th. There were some unbelievable amounts, honestly, I thought that was it, because it was very scary, there was a lot of blood. We had a third embolization, and then doctors from the Shumakov Center came to the CF department to examine me and concluded that I urgently needed to be put on the emergency list because I was actually being deprived of basic CF treatment,” Vlada said.
The number of offers should remain the same: Vlada Kisaeva
While waiting for the surgery, Vlada can only live, in her words, “by injecting antibiotics in large doses intravenously” to control the inflammatory process. In 2020, according to Kisaeva, the number of lung transplants decreased. “We began to ask what the problem was. Everyone said it was COVID-19, and that the hospitals that provide organs were taken over by COVID,” she recalls. But then the doctors gave her another reason – delays in the supply of a solution used to transport donor lungs.
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“At the moment I am in the Sklifosovsky Institute because my condition has worsened. I started bleeding from the lungs, so I was admitted to the hospital. Besides, I have been on the waiting list for a year. – says Veronika Sokovnina. In her Facebook post, she revealed that, according to her information, lung transplants have stopped across the country since November 2020, and the reason is the lack of a solution for transporting donor lungs – Perfadex Plus. The previous version of the Perfadex solution has been discontinued, and instead Perfadex Plus is being produced – a combined preparation, Sokovnina explains. “Since 2018, Perfadex Plus has been registered in the United States, Europe, the Baltic states, Kazakhstan and Belarus. And in Russia, they used the remaining batch of the first version until it ran out in November,” wrote Veronika. She herself has had bronchiectatic disease since birth. Currently her lung function is 17%. Veronika has been on the waiting list for a lung transplant for about a year. Four other patients on the waiting lists of the Shumakov Center for Transplantology and Artificial Organs and the Sklifosovsky Institute of Emergency Medicine in Moscow, as well as the Pavlov State Medical University in St. Petersburg, told the BBC that apart from Kisaeva and Sokovnina, no lung transplants are performed in Russia. (According to Kommersant, these three centers perform lung transplants in Russia).
“Mogeli Hubutia” He explains it the same way as Sokovnina: there is no preservative solution for lungs in Russia. The first version of the drug was registered in Russia. At the same time, according to Khubutiya, this was achieved after contacting Mikhail Murashko, who currently heads the Ministry of Health and previously headed Roszdravnadzor. “In Russia, thanks to his intervention, we made a lot of these transfers. But five years have passed since then, and this solution has long since run its course,” he said. At the same time, this drug has been modified – its electrolyte composition has changed. And it needs to be reregistered, but “officials haven’t gotten around to it,” Khubutiya says. As a result, Khubutiya says, lung transplants “are not being done at all in Russia” because “officials are not registering this solution in any way. “30% of these young people are dying because the authorities cannot approve this drug. It is approved by the WHO, widely used by the Americans, but we cannot use it. – Mogeli Hubutia said in an interview.
Sergei Gautier According to Kommersant, the drug Celsior is also not registered in Russia. The BBC was unable to find any of the drugs mentioned in the Russian State Register of Medicines. The off-label use of drugs is the use of drugs for indications not approved by state regulatory authorities or not mentioned in the instructions for use. According to the MedRussia portal, the prescription of off-label drugs is possible with the conclusion of a medical commission – however, in the case of a court case, this method can be considered illegal. In mid-June, the State Duma adopted in the first reading a bill that will allow the use of off-label drugs in pediatric oncology and pediatrics. The statistics cited by Sergei Goto in his conversation with “Kommersant” indicate that the number of transplantations has decreased. In Russia, in 2019, there were 25 lung transplants, as Goto mentioned in an interview with the portal Vademecum at the beginning of 2020. Meanwhile, only at the National Medical Research Center of Transplantology named after Shumakov, about a quarter of all transplants in the country were performed. The BBC was unable to contact Sergei Gotye. The Shumakov Center, the Ministry of Health, Roszdravnadzor and the Moscow Health Department did not respond to the BBC’s requests for comment. According to the Ministry of Health, as cited by “Kommersant”, currently, only on the waiting list of the Shumakov National Medical Research Center of Transplantology, 46 people are waiting for a lung transplant, while another 13 are in line for heart-lung transplantation.
Many patients lose not only their health but also their money while waiting. Patients are advised to live within two hours of the hospital: this is necessary to be able to get to the hospital quickly if a suitable lung becomes available for transplantation. Patients from other cities are forced to rent apartments near the hospital. They are literally paying for months of waiting for a transplant. Kazim Suleymanov arrived in Moscow from Dagestan in 2019. He suffers from histiocytosis X – a disease in which pathological immune cells proliferate in the lungs and bones, causing scarring. Since the same year, he has been on the waiting list for a lung transplant. “Since the end of last year, I have been physically unable to leave the house because I am constantly on oxygen. My condition is getting worse every day. And I have been sitting at home in this condition for over six months now. I move around the house at most. Even then, when I go to the bathroom and come back with the oxygen in my nose, my saturation drops to 75%. I was last discharged from the hospital at the beginning of July,” he says.
For the past two years, he has been renting an apartment with the help of relatives and friends. “Every day we have, let’s say, on our account. So today I woke up, thank God, everything is fine. I do not know what condition I will be in tomorrow. That’s how I live day by day. Waiting, waiting, waiting, just hoping. As they say, waiting is worse than death itself,” says Suleymanov.
Dmitry Chepurko, who has cystic fibrosis, also moved from Omsk to Moscow. He has a problem with medication – because he does not live at his registered address in Omsk, he is only prescribed the most expensive medication. He has to pay for rent and medicine. Charity funds help him buy the latter, such as antibiotics.
The number of offers should remain the same: Dmitry Chepurko
On his Facebook page, Dmitry Chepurko wrote that he receives a pension of 12,000 rubles, while he needs to rent a house that costs no less than 24-27 thousand rubles – in order to arrive at the center on time when a donor appears. “For the first 2 months, my wife and I rented an apartment with the help of our relatives and close friends. Then I found out that there are special charitable funds for our condition, cystic fibrosis. They help us as much as they can, but there is a queue and we have to wait… it is impossible to cope with such a situation alone,” wrote Dmitry.
The problem of lung transplantation is not only relevant in Moscow centers. Olga Agafonova from St. Petersburg is waiting for a transplant at the Pavlov State Medical University in St. Petersburg. In 2013, she learned of her diagnosis – histiocytosis. This genetic disease affects lung tissue and causes pneumothorax. “I was put on the waiting list in June 2019. I ended up in the ICU. And it was in the ICU that I found out that such surgeries were being performed in St. Petersburg,” she recalls.
Olga Agafonova With the onset of the pandemic, problems with testing began. “Just yesterday I contacted the doctor to inquire about the planned hospitalization. I have not been able to have regular check-ups for two years because of COVID-19. We have to confirm our condition every year. And she said that yes, unfortunately, our only department was closed because of COVID-19,” Olga explains.
According to her, surgeries are being delayed due to the lack of a preservation solution. “The first year was a challenge for me because there was a donor refusal. Then a purification process was initiated. We thought it was all because of COVID until this issue of solutions came up,” she says. Olga’s life is now completely dependent on oxygen. She hasn’t left her apartment for several years. “I am completely dependent on oxygen and on a machine. At the moment I have no way of getting a portable, mobile machine. Therefore, I can only leave the house for a few minutes, and even then I go out in a wheelchair, which means that my husband takes me out, I do not walk”. “I have very severe shortness of breath.
“I can no longer take care of myself, my husband takes care of me,”
“I can no longer cook, I can no longer sustain myself because of the shortness of breath… I cannot function without oxygen.”
“My saturation drops immediately, my blood pressure rises, and I begin to experience shortness of breath.”
“So the only solution is to have an operation to start breathing again,” says Olga.