Natacha Bolaños - A Vast Network Rallies in Support

The Lymphoma Coalition is a worldwide network of 85 organizations in 54 countries, each dedicated to supporting people living with lymphoma and their families. These different entities joined forces because they realized they would be much stronger together.

When Russia invaded Ukraine, we had no idea what we should do — what we could do. The coalition had never been involved in humanitarian aid. So, our initial response was to express our support for the Ukrainian people and ask how we could best help hematologists and lymphoma patients. Shortly afterward, we heard from oncologists who had identified as many as 250 patients with aggressive lymphoma who would need to be evacuated to continue their treatment. They asked us for support.

We immediately mobilised. We began contacting all our partners in the network: physicians, scientific societies, pharmaceutical companies, lymphoma research institutes, lymphoma opinion leaders, registries, hospitals, etc. — virtually everyone we had ever worked with in Europe, and beyond.

We explained the need for evacuations, and that our priority was finding hospitals willing to admit them. We wanted to ensure each patient would be assigned to a specific hospital according to his or her specific lymphoma type, current health status, and further needs going forward.

At the same time, we had to find organisations able to move the patients out of Ukraine to those medical centres. We were in contact with the Red Cross, and Doctors Without Borders, and the World Health Organisation. But here, I must admit, we were so naïve. I quickly discovered that in wartime, cancer is the tiniest of priorities for humanitarian groups. Those big organisations are focused on communicable disease like resistant tuberculosis, hepatitis, COVID-19, and HIV.

Through it all there is a sense of urgency dominating all our decisions. Each day you lose, could be the difference between life and death for some patients.

We had placed so many calls to so many organisations, but finally we started seeing results. The Fondazione Italiana Linfomi – which is connected to about 150 Italian hospitals, universities, and research centres, all equipped to treat lymphomas – said: “Send us the information on each patient, and we will find hospitals for as many as we can.” But all those patient records would need to be translated into English, and many of the treatments that patients had been receiving in Ukraine were no longer offered in Italy because of toxicity issues. What does that mean for continuity of care? It was a nightmare.

At the same time, we were also in contact with our member associations working in neighbouring countries, because some patients were not waiting to be evacuated. They picked up and left Ukraine on their own, arriving in Poland, Romania, Moldova, and

Slovakia, where our member organisations offered support to patients and cancer centres. But the big problem still remained: how do we evacuate all those patients still stuck in Ukraine and get them to the different medical centres throughout Europe willing to accept them?

We started to contact the airlines because we knew they were offering free tickets for children. But we discovered that usually did not apply to adult patients. So, we reached out to Pilots Without Borders, a few specific airlines that were offering help, and the train lines providing free tickets. But we discovered that even if we found free transportation, you still need someone to pick up the cancer patient wherever they are in Ukraine and physically escort them each step of the way to their designated hospital in another country. Ambulances were not an option as they were often targets for the Russians. We needed people on the ground, often NGOs, to help make the evacuations work. That took a full two weeks to organize.

Meanwhile, we continued working feverishly to translate and prepare all the necessary patient documents — often in vain. For example, we would receive a call that a patient is no longer well enough to travel and needed to go to the nearest Ukrainian hospital to be stabilised. Changes like that were happening several times a day. In addition, many patients were contracting COVID. So instead of flying to another country for treatment, they would have to be driven. And it was up to us to make that happen.

Once relocated as a refugee, the patients would need accommodation and so would any accompanying family members. There are many refugee camps managed by the Red Cross or by Doctors Without Borders, and other NGOs. But these are not suitable for an immunocompromised cancer patient. And in these refugee camps, almost everyone has COVID or some other infectious disease, especially when you have hundreds of people living together and sharing rooms. So, finding appropriate housing for them was yet another big challenge for us.

Looking back on it all, I am quite amazed at how we adapted and persevered on each task we undertook. Again, we were all novices in this line of work, but we knew we needed to pull together to support lymphoma cancer patients. As for disappointments and surprises? There were a few.

Often, we discovered the largest NGOs often provided the least support. We’re talking about groups that have extensive resources. But every time we would ask for something specific, the response was the same: “Not possible.”

On medicines, it was difficult to find needed treatments or get the donations to buy them. Often, we would hear that a pharmaceutical company was donating medications. But which ones? Where were they shipped? When were they shipped? Nobody is really telling us. This lack of information and transparency was an ongoing problem.

Within our own coalition, we had regular calls with all our members, sharing detailed spreadsheets, and whatever information we received. We were learning as we went, but the collaboration could not have been better.

That is perhaps the greatest lesson for us. In a situation like this, putting rivalries aside and working as one, is paramount.