Written by Peter McIntyre (Independent Journalist), supported by Richard Sullivan, Institute of Cancer Policy, King’s College London and Kathy Oliver, International Brain Tumour Alliance.
This special report captures details of how the cancer community responded to the challenges of delivering cancer care in the first 3 to 4 months of the Russian invasion on the 24th of February.
Drawn from testimonies captured by ecancer with the support of many colleagues across the ECO/ASCO Special Network on the Impact of War in Ukraine and WHO Ukraine Cancer Emergency Response, it seeks to capture some of the lived reality(s).
The Russian Federation invasion of Ukraine on February 24, 2022 caused a massive dislocation of the population – with an estimated 12 million people fleeing their homes and searching for safety.
More than seven million people were internally displaced to other areas of Ukraine, while five million left for neighbouring countries.
While many refugees have since returned to Ukraine, there are still millions of people living in temporary residence inside and outside the country.
Ukrainians with long term or critical health concerns saw life-saving treatments and care put at great risk. People living with cancer were thrown into a state of great anxiety, separated from their clinical teams and even their medical records.
Continuity of care was disrupted and screening programmes in Ukraine were put on hold.
However, this crisis brought out the best in healthcare professionals and patient support and advocacy groups within Ukraine, across Europe and globally.
These individuals and organisations continue to make heroic efforts to reconnect patients with treatment and care and have demonstrated the reality of a “connected cancer community” that combines professional expertise with humanitarian support and compassion.
The impact on people in Ukraine with cancer reflects the reality of a country thrown into the intense and brutal trauma of war. But this is a narrative of hope as well as tragedy.
The Special Network on the Impact of the War in Ukraine on Cancer
Within two weeks of the invasion, the European Cancer Organisation (ECO) and the American Society of Clinical Oncology (ASCO) launched a Special Network on the Impact of the War in Ukraine on Cancer.
The Network, now supported by more than 300 organisations worldwide, gathers information from cancer centres, health professionals and patient groups in Ukraine, neighbouring countries and beyond, and uses this for advocacy and support and to inform the policies of the World Health Organization (WHO) and European Commission (EC) in relation to the Ukraine crisis.
WHO has established an emergency response team and is working closely with Ukraine and neighbouring countries to respond to the health emergency.
The European Union granted Ukrainians the automatic right to stay and work in its 27 member nations for up to three years, and to receive health care.
Although no longer a member state of the European Union, the United Kingdom also created the ability for Ukrainian refugees to access its healthcare free of charge.
In a statement to the WHO Europe Regional Committee in May 2022, the Special Network highlighted the impact of the war on Ukrainian cancer patients and concluded that “crucial life-saving and life-extending needs remain to be addressed.”
It called for support for Ukrainian health services to provide treatment and for urgent action to enable refugees fleeing the war to reach help in a timely way.
By early July 2022 the UN had recorded more than 5.2 million refugees from Ukraine across Europe, most of them younger women with children, and older men.
Of these, 3.5 million had applied for temporary residence in another country.
Many have or are returning to Ukraine as the military situation stabilises but some cancer patients are moving between Ukraine and a neighbouring country, returning home between treatments.
Interviews with key actors
In support of the WHO Ukraine Cancer Emergency Response and the ECO-ASCO Special Network: Impact of the War in Ukraine on Cancer the online platform ecancer commissioned a set of video interviews with some of the key actors in the cancer humanitarian response.
Prof Richard Sullivan of Kings College London, one of the joint chairs of the Special Network and an advisor to the WHO, conducted Zoom interviews with 15 individuals who play a critical role inside and outside Ukraine in reconnecting cancer patients with treatment and helping patients and families navigate the trauma of war.
The interviews are a testament to the work of doctors, patient organisations, professional groups and UN agencies to respond to these challenges.
They were conducted between April and June 2022, at a critical period of almost daily change and great uncertainty about the future.
This report captures some of their testimony.
The full ecancer interviews can be viewed here.
The impact on cancer patients
The invasion of Ukraine led to a mass exodus from the areas under attack. As hospitals and health services focused on emergencies, many oncology services across the country were disrupted or temporarily closed.
In the first two months of the war, the number of cancer patients in Ukraine receiving surgery, chemotherapy or radiotherapy was halved.
Today (August 2022) the situation has improved as Ukraine has stabilised many health services and the flow of refugees is today largely back into Ukraine.
However, thousands of cancer patients have had to move their treatment within Ukraine or are receiving treatment in neighbouring countries or further afield.
Anna Uzlova from Kyiv twice underwent treatment for breast cancer in her early 30s.
She understands the sense of panic that can grip individuals when they are diagnosed.
In 2017, after her second cancer had been successfully treated, she began working to support women with breast cancer.
In 2020 she was one of a group of women in Ukraine who combined to register Inspiration Family as a foundation to focus support on adult cancer patients.
When the invasion came in February 2022, Inspiration Family responded almost overnight. “In the first days it was awful,” says Anna Uzlova. “There was great panic and we couldn’t understand what we had to do and what would happen the next day.”
Inspiration Family immediately started to get calls for help from patients.
What was going to happen to them? How could they continue treatment?
“It was really difficult,” said Anna Uzlova. “The first time we sat in our bomb shelters and started work. We understood that we had to take a deep breath and start to find some solutions. We tried to collect information – which cancer centres are working, who is working, the processes of treatment and how we could organise logistics.”
As soon as Inspiration Family started this work, their sense of powerlessness vanished. “If you help someone else you help yourself so it was very useful and helpful for us as well.”
Inspiration Family settled on four main lines of work.
Three months into the conflict, Inspiration Family had supported more than 100 patients to receive treatment outside Ukraine, was using instant messaging to inform 4,000 patients within Ukraine, and was reaching 6,000 patients and cancer survivors through their Facebook page.
But Anna Uzlova says there is still a lack of coordination about how Ukrainian patients can reach health care facilities in other countries.
Official advice was to go to the refugee centre to register for temporary protection and the next day they would be taken to hospital.
“But they arrive at the weekend, nobody takes care of them so they cannot present the next day at the hospital or they have to wait four days in a row, on the street ,as a stage four cancer patient to get a registration number so that they can be treated. Some of these things are still murky and they have to be dealt with on an individual basis. It still takes an enormous amount of time from our staff and we feel it is not very sustainable like that.”
Impact on cancer services in Ukraine
Almost half of those who had fled conflict zones arrived in the Lviv Oblast ( an oblast is a type of administrative geographic division) putting hospitals there under extreme pressure.
Dr Andriy Hrynkiv, surgical oncologist at the Lviv Regional Cancer Centre, described how some hospitals had cleared beds to be ready for casualties. Less urgent procedures had to be abandoned as surgical oncology teams focused on malignant tumours.
Some advanced techniques, such as laparoscopic surgery, were constrained by shortages of surgical supplies.
Repair surgery after a mastecomy or other cancer excisions had to be simplified.
Meanwhile clinical trials had to be abandoned and patients either sent abroad or excluded from the trials. “There are no clinical trials now in Ukraine or follow up visits”, Dr Hrynkiv said.
The most critical shortages are felt in chemotherapy.
Despite support from pharma companies and international organisations, hospitals had only a few months’ supply of the most common drugs used in cancer treatment.
Targeted therapy and precision medicines were not widely used in Ukraine before the war, and are even less available now. “Precision medicine drugs like trastuzumab are lacking and all the reserves are almost exhausted,” Hrynkiv reported.
For radiotherapy patients the adjustments have been especially difficult.
Patients have to attend centres for treatment adjusted for each patient and each machine, making it harder to switch to another centre.
Dr Ruslan Zelinskyi, the medical physicist who heads a number of radiotherapy clinics in the Kyiv area, said that virtually all radiotherapy was halted for the first month of the war, but restarted as areas of the country were liberated.
One of the clinics he oversees, The Spizhenko near Kyiv, was one of those that was closed as the area was occupied in March 2022 but reopened in May after Ukrainian forces took back control.
Many more patients are now being treated in the Kyiv area and Lviv where the greatest number of linear accelerators (linacs) are situated.
Radiotherapists are working long hours to meet the backlog and some of the older Cobalt machines have been brought back into use.
Two centres in the southern area of Ukraine under Russian occupation have continued to work but the situation is unclear in Mariupol, the city in the south east severely damaged by the war and now under occupation.
Ukraine had been making efforts to improve cancer care.
In 2017 Zelinskyi became the first President of the Ukrainian Association of Medical Physicists, committed to upgrading radiotherapy skills and equipment in oncology.
A new board was recently elected and held its first meeting to plan training courses and a conference on February 24 2022 – the very day of the invasion.
Clinicians point out that the majority of Ukrainian cancer patients are still being treated inside the country.
Interviewed on May 21, this year, Ruslan Zelinskyi said: “Our staff are heroic and some of them are working despite constant shelling. For the past three months and especially at the beginning of the war, we have felt the support of the international community and many patients have been treated in European countries. We are very grateful to everyone.”
Surgeon Hrynkiv says that health staff have psychologically adjusted to working under war conditions. “We are not even rushing at the alarms and sirens. We continue to operate on patients and we are trying our best to maintain our work.”
He says that most cancer patients remain in Ukraine because the majority of refugees outside the country are younger women and children.
The international community can help Ukraine and protect health services in neighbouring countries by keeping Ukraine supplied with medical equipment and medicines, he says.
He believes that it is better to provide treatment in Ukraine for patients who want to stay. “It is right, not only for Ukraine but also for our neighbours … because if our patients continue their treatment here, the load on the economies of our neighbours will definitely decrease.”
How Ukraine’s neighbours stepped up to help
Poland has a robust and well developed health system.
Each of the 16 regions (voivodeships) has a large cancer centre and several smaller centres.
A strategy to develop a Comprehensive Cancer Care Network across the country was launched in 2020 – although implementation was delayed by the COVID-19 pandemic.
The UN estimates that by July 2022 almost 1.2 million Ukrainians had temporary resident status in Poland.
The Polish Government quickly authorised all the Ukrainian refugees to have the right to receive the same health care as Polish citizens and a national hotline and web site were established to connect Ukrainian patients to more than 20 oncology centres, supported by patient groups and pharma companies.
The Polish National Health Fund covers most costs including many innovative or targeted cancer treatments not usually available in Ukraine.
Children with cancer were a priority for evacuation and they arrived in groups – from one Ukrainian hospital alone a group of 20-30 children were relocated to Poland.
The main demand has been to treat breast and gynaecological cancer in women – often in a more advanced stage because of the lack of comprehensive screening or HPV vaccine in Ukraine. In the first months of the conflict, a quarter of the gynaecological and breast cancer patients at some Polish centres were from Ukraine.
Jacek Jassem, who heads the Department of Oncology and Radiotherapy, in the Medical University of Gdansk says this support is sustainable for now. “I would say that it is important that Ukrainians are provided exactly the same care as Polish patients. On the other hand it may cause some problems in the future.”
Patients often arrived without medical records and were receiving treatments in Ukraine regarded as outdated in Poland. “Even if they have documentation it is in Ukrainian and sometimes very short. It is not easy to contact their physicians so we face problems.”
Some biopsies have to be redone to confirm a diagnosis.
While chemotherapy can be adjusted this is not so easy with radiotherapy.
“Many patients were treated with cobalt machines which don’t exist anymore in Poland. We need much more detail of radiotherapy, the volume and fractionation to make it safe and of real quality and this is a real challenge.”
He is proud of the way Poland has responded.
“What is really touching is the big help from private families. I would say the atmosphere in Poland so far is very friendly to Ukrainians and they are completely accepted in Poland with tolerance, with friendship.”
Poland made agreements for other EU countries, the UK, Canada and the USA to take some patients, but relatively few have chosen to relocate.
“Ukrainian patients who come to Poland want to stay here because they are closer to their homes, and they have less problem with language … we can generally communicate with these patients.”
Prof Piotr Rutkowski, Professor of Surgical Oncology at the National Research Institute of Oncology in Warsaw, agrees that Poland is coping well but also that it will eventually need support, especially since it has a shortage of physicians and nurses.
Rutkowski specialises in soft tissue cancers including melanoma and sarcomas and he also sees Ukrainian patients with more advanced disease.
He is concerned about what will happen if there is another wave of COVID cases in the autumn, since treatment usually has to be suspended if a patient gets COVID and Ukraine has low rates of immunisation.
Polish oncology centres remain determined to provide Ukrainian patients with high quality care.
“This is our job,” says Rutkowski. “We know that cancer has no border and we try to help as we can.”
Cancer services have also improved over recent years in Romania with many innovative treatments covered by the national health insurance scheme.
A national health plan to combat cancer was announced in January 2022 – just a month before the invasion of Ukraine.
When the invasion took place Romania agreed that health insurance scheme would be extended to Ukrainian refugees.
Medical oncologist, Nicoleta Antone, is director of the breast cancer unit in Cluj-Napoca, a Romanian city closest to the border with Ukraine.
The Institute of Oncology centre appointed a link person to field phone calls and emails from refugees and hired volunteers to help with translation.
“The major problem that we encountered was first the language barrier, then medical records. Some medical records were hand written and it was very difficult for us to interpret them. Some patients even lacked these documents. Sometimes we really had to restage the patient, and reassess everything in order that they can receive the treatment."
“In Romania we are more aligned with the international guidelines and recommendations, and sometimes the treatment that was started in Ukraine was not in line with the international guidelines. We discussed their cases in our multidisciplinary tumour boards and we have recommended the treatment according to our institutional guidelines and national guidelines and protocols.”
At the time of the interview Antone’s hospital had 35-40 Ukrainian patients under active treatment with others being seen for follow up care or screening.
Romania is also accepting some Ukrainian patients from Moldova with support from The Blue Heron Foundation.
Slovakia also responded rapidly to the arrival of refugees on their border, within hours of the Russian invasion.
Dr Darina Sedláková from the Slovak League Against Cancer says Slovakian people were at first fearful but then pitched in to help. “It didn’t take more than several hours before people showed up at the borders. The first reaction of NGOs and common people was fantastic like never before. Everybody wanted to help, either to come in person to the borders, or to offer something.”
Among those arriving from Ukraine were cancer patients separated from their medicines. “We as a League Against Cancer really raised our hands. If there are cancer patients, let us know, we shall try to think what we can do.”
They began to connect people with health care facilities – making phone calls and connections with other NGOs.
“I do not want to say the situation is ideal. But there is a system to which the League has contributed from the very beginning, continues to play its part and we know whom to call and how to go about things. This is where we feel really that we did a good job.”
Dr Sedláková says the situation is difficult for cancer patients from Slovakia as well as from Ukraine, because many innovative treatments are not available and the system needs more health care staff.
The COVID pandemic disrupted screening programmes and as a result they are expecting more late stage cancers to emerge.
Moldova is one of the poorest countries in Europe.
Although it has developed a national programme for cancer, delays in diagnosis and treatment result in cancers often being treated at a later stage.
Mammography screening rates are less than 5% and there are long waits for CT scans.
However, like other neighbouring countries Moldova is committed to supporting Ukrainian refugees.
Of 200,000 refugees who arrived immediately following the invasion about 190 patients registered for treatment at the National Institute of Oncology in Chishinau.
Institute Director, Ruslan Boltaga, is proud of the response of his country which also feels at risk from Russian ambitions. “Everyone was going to the border, taking families to their houses. It was a big challenge. Now it is less but at the beginning it was a terrible situation.”
Moldova was instrumental in helping children with cancer receive paediatric oncology care in Poland.
However, Moldova has only been able to deal with emergency cases for adults.
The Blue Heron Foundation was established in Romania in 2002 to support orphans and abandoned youth but has since broadened its scope.
Romanian born Horia Vulpe, who is a radiation oncologist and director of quality and patient safety at the Queen’s Medical Center, Honolulu, helped to arrange for Romania to accept Ukrainian patients from Moldova with the support of the Foundation and its networks.
The Foundation is raising funds to cover the costs of treatment.
In Moldova the National Cancer Institute convened a tumour board attended online by doctors from Romania, the USA and Canada.
This helped to resolve who could be treated in Moldova and who should have treatment in Romania.
The first patients included a 39 year old mother of six children who received radiotherapy treatment in Cluj Napoca, Romania.
Networks are being strengthened with co-ordinators and translators to ensure that patients do not miss out.
However, Horia Vulpe notes that not all Ukrainian patients are reachable. “Some have gone to other countries or returned to Ukraine or changed their phone numbers, so the challenges for us are to make sure that they are not lost in the system and the cancer progresses every day.”
Ruslan Boltaga says it is not easy to persuade patients that they should go for treatment in other countries. “Many are reluctant to leave. “They refused to go to the EU even if they were offered this option so for various reasons; language, culture, distance from home and so on.”
Moldova is urgently trying to improve its services.
An expert group from the World Health Organization has visited and is preparing a report.
Boltaga said they have to look to the future. “Even if war stops today the crisis will go on for a long time.”
Patient groups make a global support net
One standout response to the crisis has been the reaction of cancer patient advocacy organisations across Europe, which put themselves onto a war footing while larger NGOs and institutions were getting their boots on.
They have comparatively few resources, but are incredibly well connected and experienced.
Their wide-spread, established networks proved vital in providing help and support to Ukrainian refugees with cancer.
European Cancer Organisation (ECO)
Mike Morrissey, chief executive of the European Cancer Organisation (ECO) explains how the organisation brought together – rather like a superconductor of networks - oncologists, nurses, pharmacists and 22 European patient organisations to form a powerful consortium with enough clout to influence the European Union and the WHO on the many challenges of the Ukraine crisis.
Yet Morrissey is self-critical when he thinks back to the opening day of the war. “The learning that we all did together in the first few weeks of the war was massively important. I personally went through a very steep learning curve going to an executive committee meeting soon after the war started and getting a lot of pressure from oncologists, nurses, pharmacists and patients.”
The clear message was that the cancer community wanted to mobilise across the globe and this soon led to the creation of the Ukraine special network with ASCO.
“Suddenly there was just a rush of energy and support and enthusiasm for the whole global cancer community to come together. It is certainly the first time that I have seen that and it has been very humbling to be a small part of it.
“We weren’t saying that cancer was more important than war injuries or more important than refugees with cardio-vascular disease but we had a role to play in response to Ukraine.”
Morrissey quickly realised that their role was not to tell people what to do but to mobilise the power of the network. “It is bringing people together and listening to what they have to say, where they think the challenges are and where they see the opportunities to work together. The convening exercise in itself is massively important. It means that people have an outlet for their energy and support and suggestions and then it becomes a question of joining the dots seeing where the priorities lie.”
Disagreements needed to be talked through. “It was massively important to be upfront and honest about it, rather than polite and pretend that everybody agrees with everybody. But there is no point in falling out either.”
Patient groups are nimble and adaptable in a way that big institutions are not and within ECO they had strong support from the professions.
Some things happened at lightning speed – like dozens of children with cancer from Ukraine arriving in Poland for treatment.
Morrissey is not surprised. “These are organisations with very strong established networks. These connections are all about people at the end of the day. If you knew someone the other side of the border and you can make a difference, you are going to do that.”
It was often frustrating waiting for larger agencies to work through their procedures. “The struggle – especially at the beginning – was that these patient organisations were really making it happen and getting people across the border and for Government institutions it is necessarily a much longer process. That initial tension worried me. You have got patient organisations in the fast lane and Government organisations in the slow lane and how to get them to converge? That is a real challenge which is not over.”
But ECO has spent years building trust with the European Commission and the WHO and as a result it has influence. “Our positioning as an organisation is to be a resource – a resource for our members, our patient organisations and a resource the European Cancer community but also a resource for politicians and policy makers.
“We are in the business of helping to get stuff done. Having a go in the media is the last resort and is unlikely to deliver results honestly when you are talking to organisations like the European Commission and the WHO. You are better off working from within, trying to find solutions and letting those institutions own the solutions because that is the way that they work most effectively.”
The Lymphoma Coalition
The Lymphoma Coalition is a global network of 80+ member organisations in 64 countries, with just seven staff but endless commitment.
Natacha Bolaños, Regional Manager for Europe and Global Alliances Manager, knew they had to respond quickly. “From the first days my feeling was this is our mission, this is the right thing to do and we need to react fast and we need to be able to understand what were the requests from those who are on the ground in Ukraine and in the neighbouring countries.”
From her base in Madrid she reached out to patient support groups and the Hematology Society of Ukraine and began to collect information about centres inside and outside the country able to support patients with blood cancer. “We wanted to understand the disruption in treatment and care in general because if hospitals are not capable to provide the basic assistance, you cannot even assure public health and you cannot assure that people in general will have the support that they need.”
They collected a list of patients in urgent need including those waiting for bone marrow transplants. “Blood cancers such as lymphomas and leukaemia can be very aggressive so we are talking about opportunities to survive or to die.”
In many cases this meant patients moving within Ukraine, since all the bone marrow transplantation units are in Kiev.
In other cases parents were desperate to get treatment abroad for their children.
The Lymphoma Coalition began matching patients with hospitals with capacity to provide treatment and care, enlisting help from Ukrainian medical students to translate medical records.
They assessed the impact on health care beyond lymphoma and blood cancers. “We also wanted to understand the disruption in treatment and care in general because if hospitals are not capable to provide basic assistance, you cannot even assure public health and you cannot assure that people in general will have the support that they need.”
The Coalition monitors the availability of medicines and medical staff and the traumatic impact of the war in Ukraine on blood cancer patients. They share information with ESMO, ASCO and the NCI and through an informal network of European patient organisations. “In the end all the knowledge and intelligence we were collecting was providing a benefit not only to our community but to a wider community and provided support to hospitals.”
Youth Cancer Europe
Youth Cancer Europe is one of the new dynamic kids on the block.
Since holding their first assembly in 2017, they have built a presence in 31 European countries, representing 470,000 Europeans under the age of 40 living with cancer.
Patient organisations within Ukraine were active in signposting support pathways for cancer patients and Youth Cancer Europe found requests beginning to flood in.
Some patients had medical records and time to make choices.
Sometimes things were more chaotic.
Katie Rizvi, founder and chief executive of Youth Cancer Europe, recalls: “There were cases where we got phone calls from people saying I am at the border where are you? And we had to unscramble the details, like who are you, where are you, where did you find us?”
Youth Cancer Europe, with its base in Cluj Napoca, Romania, now has translators on its staff but in these early stages had to find volunteers to make distraught patients comfortable and understand their priorities before they could start matching hospitals or directing them with cancer services.
Those who left Ukraine needed help to understand the system. Katie Rizvi notes: “They are sorting out their families, sorting out their finances. Sometimes their pets are coming with them. They have lost their jobs. They don’t have money to pay for a taxi to take them to the cancer centre. "
“We know patients who ended up in shelters, in churches, and sports halls and makeshift places and that is not appropriate for someone suffering from side effects or undergoing chemotherapy or other kinds of treatment.
“So it is a huge amount of logistics and we very quickly had to assemble a team of I think more than 20 people. We were very impressed by everyone’s professionalism and very quickly learning what we had to do.”
Once children with cancer were evacuated for treatment in Poland, Youth Cancer Europe decided not to make age distinctions.
Katie Rizvi said: “We have made it clear from the beginning that in the context of responding to the war in Ukraine we are not going to discriminate and we are going to take any request from any cancer patient whatsoever. I would say that one third of the requests would be coming from young people under the age of 40, and the rest would be older adults.”
International Brain Tumour Alliance
Networking was critical to the patient advocacy response. Kathy Oliver, chair of the International Brain Tumour Alliance (IBTA) and co-chair of the European Cancer Organisation’s Patient Advisory Committee emphasises how closely patient groups worked together – holding a pan-European on-line meeting every day.
She said: “Our organisation and many other cancer patient organisations were thrown from one day to the next –24 February to 25 February – into emergency mode. In the beginning it was very chaotic. We were starting from zero and working our way through a wide range of really incredible challenges.
“One of the benefits of being a patient organisation is the fact that you are very, very well networked. Many of us run organisations that are very lean and can react very quickly. They are not bureaucratic in any way and we can just get on and, as we say, just do it! ‘Not just the IBTA, the European cancer patient advocacy world - we are doers.”
Nevertheless, patient groups did feel exposed. “The larger aid agencies were not geared up to this instant catastrophe,” Oliver said, “and seemed to move relatively slowly in gearing up to do practical things. We found in the beginning that the patient groups were way ahead in the help that was provided and the intelligence on the ground.”
“We all had a lot of sleepless nights if we went to bed at all in the beginning. But some of the cancer patient advocacy organisations set up excellent pathways even very early on in this crisis for dealing with patients who approached them – how to help extract them from a war zone, how to find treatment for them then in one of the bordering countries, how to find them accommodation, how to find translators. All of these were part of a giant puzzle. "
“And the reason that we were successful is because we were networked. We all met first thing for an hour every single morning for months, and we discussed our problems. We traded tips and email addresses and contacts. And every 24 hours we did that and that is how we were able to function.”
The challenge for radiotherapy
Radiotherapists across the world had been grappling to adjust to the COVID pandemic since April 2020 and created the Global Coalition for Radiotherapy (GCR) to improve radiotherapy, specifically its delivery to underserved populations.
When the invasion in Ukraine began, the GCR responded.
Professor Pat Price, is a clinical oncologist specialising in advanced radiotherapy techniques at Imperial College London and is part of the GCR leadership team.
With Dr Ruslan Zelinskyi in Ukraine she carried out a needs assessment and began to plan how to support Ukraine and neighbouring countries.
Pat Price says that restoring treatment quickly is critical, since it has been estimated that for every four weeks’ delay there is a 10% reduction in survival rates. “There are so many refugees that some of them will be in the middle of cancer treatment, some of them will be diagnosed with cancer, particularly in the older population. How can people start treatment with radiotherapy or continue with their radiotherapy treatment when they are completely displaced?”
GCR worked with Ukrainian colleagues to provide up-to-date information about which centres were open and they helped with remote planning – noting that many patients do not want to leave Ukraine.
“What was crucial was recognising that radiotherapy is different. People have to travel routinely to a place. There is big equipment. There is a concern about bomb damage to cobalt machines.”
The challenge was not only in Ukraine but also in the neighbouring countries.
Pat Price said: “Eastern Europe has less radiotherapy than western countries. They work incredibly hard but they are working almost to capacity already, so we are conscious that with the refugees coming in and the extra work they will have to do, it may become a burden. How can the WHO or the outside community help them?”
There has been a global outpouring of support from radiotherapy colleagues, from the WHO and from industry.
Manufacturers supported pathways to get spare parts into Ukraine and lawyers from Varian Medical Systems produced a consent form acceptable for European GDPR so that displaced patients could give consent for data to be shared.
Restoring services gives people hope, Pat Price says. “In the middle of this awful war we have to know that there are cancer patients who can be cured as well. Hopefully some really good things can come out of this.”
Hopes and fears for the future
Those involved in providing and supporting cancer services are already looking to the future – both as the war in Ukraine continues, and afterwards as services and healthcare institutions need to be rebuilt.
For many this war has highlighted the inequalities across Europe and within countries and the need to bring all cancer services up to best standard.
For Anna Uzlova, from Inspiration Family in Kyiv, the challenges are about continuing services during a conflict.
The greatest need is to maintain the supply of cancer drugs at a time when patients cannot afford to pay and when supply lines are compromised.
She is also concerned that diagnostic services have been reduced by the conflict and she fears that in a year or so, advanced cancers will be more common.
Katie Rizvi from Youth Cancer Europe (YCE) says there is still a need for greater clarity about how refugees can secure treatment outside Ukraine, and to ease bureaucratic obstacles.
The emergency response system as set out in the EU Cross-Border Healthcare Directive works on paper but in practice does not answer the needs of all patients who are displaced.
There is a gap between what individual clinicians and hospitals would like to do and the authority to give the go-ahead for treatment.
She says: “What worries me still is that months into this crisis we are still not clear about the entry points for many European hospitals. Many times we do find a clinician who specialises in a very rare form of cancer very willing to take on a case, but we are not sure about the hospital. Or the hospital approves it but it does take days in lucky cases and sometimes longer.”
Often the hospital itself does not know which aspects of treatment will be reimbursed by the state system.
“We are still not able to publish some of the content details of some of these hospitals because they are afraid of an influx of Ukrainian refugees and cancer patients that they don’t have the authority to manage. "
“Just the fact that we have to hustle for each patient and run the full circle of which service will they get, which will be reimbursed in which type of hospital, in which country, in which region of that European member state, is actually really, really, draining and a lot of time of our staff is just spent on communicating with clinics because there is not a straightforward answer on each of these things.”
Nicoleta Antone at the breast cancer unit in Cluj-Napoca, Romania says that they must keep good records for patients who are being treated in neighbouring countries, and use them to make a cancer registry from which they can learn. “It will be very important in the future to have the statistical data and know what is happening. This is an issue not just for Romania but also for other neighbouring countries. Cancer registries are very important because if we don’t have that, everything is based on single institutions or anecdotal data. Without data we don’t actually know how things are going.”
Kathy Oliver of the International Brain Tumour Alliance (IBTA) points to short term and longer term priorities. “We are very aware of the huge burden on the bordering countries of Ukraine and probably that kind of burden cannot be maintained indefinitely. There are refugees who are actually very fluid moving back and forth across the borders to the neighbouring countries to get treated or get a scan or whatever and then moving back to Ukraine. People want to be with their families, in an environment that they know, speaking a language that everybody understands around them. But it does make it very difficult to keep track of who is going where. "
“Then there is another group of refugees with cancer who will be out of Ukraine for an extended period of time, if not forever. We need to make sure that those people can get proper regular scanning and be part of prevention programmes. We need a formula of preparedness to deal with the permanency of some of these refugees. We cannot just always react quickly at the last minute. We learned this in COVID as well – there need to be plans in place.”
Pat Price from the Global Coalition for Radiotherapy agrees that the response cannot just be about crisis management.
She said: “It has brought into focus that we are all the same people, we need to have equal access to radiotherapy. It is fantastic for cure and also for palliation but we know in the world there just simply isn’t enough radiotherapy. "
“How can we help them build to give Eastern Europe the best radiotherapy as the West of Europe. I think there is an opportunity here now with the technology revolution that has come along in the last ten years. Ukraine had planned a big expansion and development of their services replacing the old cobalt with the more flexible linear accelerators. We must ensure that that is not lost in all this trauma and bad things that are going on.”
This trauma and “bad things” dictate a huge need for psychological support for the Ukrainian population.
Katie Rizvi from Youth Cancer Europe says that every single person they helped was showing signs of extreme stress. “There is not one person leaving Ukraine without a trauma.”
Kathy Oliver from the International Brain Tumour Alliance agrees. “There are going to be millions and millions of Ukrainian people, patients and others, who are going to need psychosocial support to deal with the trauma they have faced. The numbers are going to be enormous … everyone from children up to elderly people.”
Psycho-oncologist Dr Csaba Dégi from Bolyai University in Cluj-Napoca, Romania, and Executive Secretary of the International Psycho-Oncology Society (IPOS), says that people often hide their fears. “Safety is not just the four walls you are living in. Safety also means that you still can have some kind of control over your life even if everything else is just falling apart. Cancer itself is a traumatic experience – it changes you in a way that you were never prepared for.”
“You have to look and to find the persons in distress because they will not knock on your door. The second thing is you have to listen. Psycho-oncologists are not fortune tellers. You cannot tell by the face. You cannot tell by the eyes.
“The essence of psychosocial support is that you have to find the suffering before it destroys you. Having cancer in a war situation and being on the road, I think this is the highest uncertainty that the person can experience.”
Building back – the road to equality
For CEO Mike Morrissey from ECO and others the crisis in Ukraine has raised the wider issue of inequalities.
He says that the conflict is having a massive impact on an already inequitable health care system in the east of Europe which the (EU) Beating Cancer Plan and the Cancer Mission were designed to address.
He said: “How are we going to mobilise long time solutions there, while at the same time not taking our eye off the ball of the emergency unfolding before our eyes. That is a tricky thing to pull off but accepting that we are in this for the long term is the first part of that.”
Darina Sedláková from the Slovak League Against Cancer agrees.
Ukrainians who decide to stay in Slovakia will become part of the normal health system and they need to plan for around an extra 100,000 people needing health services, including screening and preventative services.
There will be similar needs for education, employment and housing.
“I think we have to pay more attention to equal access to services because I think Europe is rich enough to serve everybody. Despite the fact we are really talking about equal access and equity and all these wonderful things, it seems that year after year schisms are opening more and more and the disparities are increasing unfortunately.”
Natacha Bolaños from the Lymphoma Coalition is also concerned with equality, noting that Ukraine already had a problem with health services before the war. “What we are seeing now in the health care system in Ukraine is not only the consequence of the war; it is the consequence of a system that was corrupted, that was not in the best place. We need to take all those factors into consideration, especially when the moment will arrive to reconstruct and to rebuild in Ukraine. "
“I would say that actions would need to be taken to restore some sort of normality, where people can live, children can go to school, and can go back to work. Of course we will need to rebuild the cities, and in rebuilding those cities we need to rebuild also the mindset of the Ukrainian people and try to leave behind everything we learned in the past."
“If we do not heal people from the past, if we do not heal that resentment it will be very difficult, so we have to provide very good psychological services not only to those who were in the battle, in the front, but to health care professionals who are called to keep public health what it should be."
“I don’t think we will have any problems in bringing back the Ukrainian citizens that left. That is the only thing they want to do – come back to their country. "
“But we will have to support financially as well – rebuilding the roads, rebuilding the connections between the cities and to reduce disparities”.
“Yes this will require a significant plan and investment. We will need hundreds of billions of Euros. I think that the high income countries have the responsibility to help to rebuild.”
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