Ukrainian brain tumour patients and the IBTA The war in Ukraine has been cataclysmic for healthcare in that country. At the time of this magazine’s publication, over eight million Ukrainians were refugees and over six million Ukrainian citizens were internally displaced in their country. That’s over 14 million people out of a population of 43.2 million. At the time of writing, the World Health Organisation (WHO) reports that there have been 323 attacks on healthcare in Ukraine, including “health facilities, transport, personnel, patients, supplies and warehouses” (Emergency in Ukraine: external situation report #16, published 30 June 2022: reporting period: 16–29 June 2022). So Ukrainian brain tumour patients face two enormous challenges – surviving a brutal war and surviving a brutal cancer. For the first months of the war in Ukraine, it largely fell to patient advocacy organisations to fill a gaping hole in the rescue and relocation of Ukrainian refugees with cancer. As patient organisations, our priority was to quickly get cancer patients out of Ukraine and into safe-haven countries to continue their cancer treatment. During the first weeks of the war in Ukraine, the IBTA met online first thing every morning with European and international patient advocacy organisations representing blood cancers, breast cancer, kidney cancer, melanoma, myeloma and other site-specific cancers. We exchanged information about safe corridors out of Ukraine and treatment possibilities in the bordering countries of Poland, Hungary, Romania, Slovakia and Moldova. We also worked with our clinical contacts to place patients in European
healthcare institutions outside of Ukraine. And we worked with incredibly brave people - whose names we never even knew - who were literally dodging snipers and bombs, extracting cancer patients from war zones in the eastern part of Ukraine and transporting them to safety. Many refugees have fled Ukraine without any medical records. Or their medical records were destroyed by bombing. Ukrainian cancer patients and their families are also suffering from substantial trauma and are in great need of psychological support. The language barrier is significant and we had to quickly line up numerous translators to help us. At the IBTA, we created a resources page for Ukrainian brain tumour patients on our website, and also a help form which patients can fill in quickly online. These website pages are available in Ukrainian and English. We’re also working very closely with the European Cancer Organisation (ECO) and American Society of Clinical Oncology (ASCO) as part of their Special Network on Ukraine. This Network, in turn, provides a direct channel of communication with the European Commission, WHO, Union for International Cancer Control (UICC) and oncologists in Ukraine. So far at the IBTA, we’ve helped an anaplastic meningioma patient in central Ukraine (with the great assistance of our Polish colleague at the Glioma Foundation Center); a newly diagnosed glioblastoma patient who fled to Romania; an adult patient with an anaplastic oligodendroglioma; an adult patient with a medulloblastoma, and a two-yearold child
who actually turned out not to have a brain tumour but a previously undiagnosed very rare neurological condition. The IBTA helped the child and the family get a correct diagnosis in Germany. Although we’ve dealt with a small number of brain tumour patients from Ukraine up to now (we anticipate more will come), each case has been extremely complex. Some of the cases involve working with other organisations which arrange “extraction” from eastern Ukraine, transportation through safe corridors and accommodation in the new host country. We help organise brain tumour treatment outside of Ukraine working with advocacy colleagues and clinical contacts - for example - in Poland, Romania and Italy. The enormous initial wave of Ukrainian refugees crossing borders has wound down from those first frenetic months. But the situation in Ukraine is still highly volatile and unpredictable. Peace and reconstruction seem a very long way away. But one day re-building will start, and we should be thinking now of how we, as the international brain tumour community, can continue helping Ukrainian brain tumour patients, their families and healthcare professionals during that rebuilding stage. n
For more information on the IBTA’s work with Ukrainian brain tumour patients, see https://theibta.org/ukraine/
Image credits: Wave: iStock.com/Pacha M. Vector, Ribbon: iStock.com/Andril Shyp Brain Tumour
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