Helping Ukrainian Cancer Patients: It’s the Patient Organisations Who Can Guide

By Kathy Oliver, Co-Chair, ECO Patient Advisory Committee

People working in the cancer patient advocacy community do so because they are driven by a common desire to act, and not simply stand by, while so much remains to be achieved in improving cancer patient care. That same spirit of decisiveness and proactivity has animated a very instant response by cancer patient organisations to the tragedy we have all seen unfolding on our television screens following Russia’s invasion of Ukraine.

Many of the cancer patient advocacy organisations who are members of the ECO Patient Advisory Committee – with their first-hand experience of cancer, their expertise and extensive networks across Europe and beyond – have been working tirelessly around the clock to help individual cancer patients and their families still within Ukraine and those who have fled that country. This work has, for example, involved securing transportation for patients and families wanting to leave Ukraine; arranging translations of medical documents; assisting patients navigating their way through unfamiliar health systems in receiving countries; securing continuation of treatment and care for Ukrainian cancer patients in safe havens; gathering intelligence from contacts on the ground and even offering accommodation in their own home to refugees fleeing the ravages of war.

Many ECO Patient Advisory Committee members are also involved in WECAN - the Workgroup of European Cancer Patient Advocacy Networks which has also rapidly and successfully adapted itself to provide solutions to the terrible experiences now being inflicted upon cancer patients, and everyone, in Ukraine. Over the last four weeks, a group within WECAN has met early every morning to exchange information, news and experiences; highlight practical guidance; provide valuable on-the-ground contact information; map their procedures and develop extensive resources.

But this experience is also a two-way exchange. As patient advocates, we are extremely moved, inspired and energised by the courage, determination and dignity which has been shown by so many who are caught up in these tumultuous times - especially those who are not only bearing the huge burden of losing their homes, belongings and livelihoods but on top of all of this, those who are also coping with a cancer diagnosis and treatment.  

Cancer patient organisations are filling the gaps and acting with immediacy during this brutal war.  The rapid response from the cancer patient advocacy community, working in partnership with their networks, relevant medical societies and contact institutions, has meant that hundreds of people – adults and children with cancer and their families - have been able to reach safety, care and support.  Cancer patient organisations have also created special pages in the mother languages of Ukrainians on their websites and are widely sharing the substantial information resources that they have gathered. New connections and partnerships are being formed with on-the-ground contacts who also have the ability to make a difference. What patient organisations may lack in large resources, they more than make up for with the ability to act quickly and pragmatically to get things done.

But increasingly there is an awareness that, as this tragic scenario looks likely to persist, there is a need for longer-term solutions to major issues such as medical shortages in Ukraine and the reassurance of refugee cancer patients receiving the care and treatment that should be taken as standard in Europe. For these challenges, we have been extremely pleased to be able to expand our patient advocacy network connections by working with the ECO-ASCO Special Network on the Impact of the War in Ukraine on Cancer providing us with the opportunity to exchange with the European Commission, WHO, medical societies, and others.
 
The ECO-ASCO Special Network is widely signposting and amplifying the vital work that cancer patient advocacy organisations and many other stakeholders in the cancer world and related fields are carrying out during the crisis in Ukraine. 

More work remains to be done in ensuring all gaps are addressed in a systematic, coordinated and efficient way. Using the collected intelligence and lived experience of cancer patient organisations, which is deeply rooted in day-to-day realities and problem-solving, is going to be vital for the higher- level, decision-making bodies to act with accuracy.

My own personal experience of working with Bosnian refugees in the 1990s tells me too that we ALL have a role to play in maintaining a public mood of compassion, understanding and willingness to help. Standing by, merely observing suffering and considering it someone else’s problem should not be an option for any of us.