Sochi Olympic Games had opened last Friday with a beautifully designed ceremony that included impressive technical solutions and excluded any mention of unpleasant recent history (Gulag? What Gulag?) Much has been written about their cost: the Games have become the most expensive in history, but even with all the money thrown in, dismal reports of unfinished construction circulated just days before the start. Still, the West had warmed up to Russia noticeably - the show's undeniable sophistication and artistry and the shiny new stadiums have made some wonder whether the public opinion in the West has been unfairly biased.
Alas, the Olympic village is not much more than a good old Potemkin village - figuratively, and literally speaking. As ever, Russia remains the country firmly focused on prestige at expense of its own people. It is common knowledge that the Olympics are President Putin's pet project. A sports enthusiast, Putin had sent clear signals in the past for his preference of muscle over mind, and the decline of free thought and profusion of oligarch-owned team sports are some of the intended consequences.
Even oncologists are now preoccupied with restoring Russia's glory, with predictably disastrous results. Last week Dr. Polyakov, Russia's Chief Pediatric Oncologist spoke out against charities helping children travel abroad for treatment. He said that such charities "discredit" Russian healthcare, and that he knows of no child considered incurable in Russia that would return home healthy after expensive treatment abroad.
A firestorm of Olympic proportions erupted. One of the largest charities cited several cases of children who received care unavailable in Russia and are now in remission. A hospice volunteer wrote about a child who spent months in a coma in Russia, but has improved significantly after coming to London. Even Healthcare Ministry officials cautiously supported charities. After all, Russia has some of the highest cancer mortality rates in Europe. With woefully insufficient budget, continued deterioration of healthcare is inevitable. Charities are the ones that pay for medications, supplies, tests, scans, nurses and so many other expenses that hospitals cannot function without (these photos of hospitals in various regions were taken in 2011 - 2013; a few shots of hospitals in African countries are provided for comparison).
No one wants to see incurable patients travel abroad and spend enormous amounts of money just to extend their lives by a few months, and Dr. Polyakov's concern is understandable. But the problem is that in Russia the term "incurable" can mean many different things: from having a truly incurable disease, to simply lacking clinical experience or new generation drugs that are available elsewhere. The gray zone of incurability varies widely among Russia's regions, and especially in comparison to Moscow or St. Petersburg. We too have examples of "incurable" cancer patients returning home in remission after undergoing treatment abroad. It did not even have to be expensive in these cases.
|Ivan R. is now 3 years old. He was born with a genetic disease, Wiskott-Aldrich syndrome. It leads to recurrent bleeding, severe infections and malignancies. His older brother died from it when he was only 1. Although bone marrow transplant could potentially provide cure, no matching donors were found for Ivan. Fortunately, new gene therapy was available in Europe and the US. We found a hospital in Milan that accepted Ivan for participation in a clinical trial, where all therapy was provided free of charge. Ivan's therapy was successful, and now, two years after the treatment, he is able to go to out in public and have a normal life.||Sergei M. has been fighting recurrent Hodgkin's lymphoma since 1997. It affects primarily young people, and is highly curable in early stages, but less so after relapse from initial treatment. Sergei had his third relapse in 2011, and was referred for palliative therapy. Instead, he contacted us and asked for help with finding treatment options. We found an expanded access study in the US for a new lymphoma drug, Adcetris. Sergei was accepted by a hospital in South Carolina where he received the drug for free for 9 months. Afterwards, he returned to Russia and remains in remission to this day.|
Several other patients enrolled in protocols at National Cancer Institute in Bethesda, Maryland. The Institute accepts eligible patients from around the world in their clinical studies, and the participation is free.
Over the few years that we have been actively helping cancer patients, we asked for and received hundreds of free consultations and second opinions for our patients from the oncologists in Europe and the US. We can only hope that one day our work will no longer be required, and all patients will receive the best care possible at home. But for that to happen, the focus of attention should shift to the patient.
For now, like in ancient Sparta, the sick are treated as undesirables. On the day of the Olympic ceremony, Admiral Apanasenko, ballistic missiles expert, shot himself in Moscow, fell in a coma and died a few days later. The admiral suffered from terminal pancreatic cancer, but his family spent days trying to obtain prescription pain control medications for him (morphine-containing drugs are absurdly difficult to get, even for dying patients). After his spouse returned home empty-handed yet again, Admiral Apanasenko had enough. The last note he left behind blamed the government.