Larysa Lavreniuk, head of the Crab Charitable Foundation for Children with Cancer, told Interfax-Ukraine how the war affected the ability of children with cancer to receive medical care, how and what Ukrainian patients are treated abroad, and the need to develop rehabilitation for children who have undergone cancer treatment.
Text: Anna Levchenko
– How do you assess the situation with medical care for cancer patients, in particular children with cancer, today, almost two years into the full-scale war? Are there enough doctors and medicines?
– Unfortunately, oncology is not waiting, it has not disappeared, and the war has added delays in diagnosis and treatment. Regional onco-hematology departments do not refuse treatment, and if they do not have the resources to cope on their own, they refer children to the Okhmatdyt National Children’s Hospital and the National Cancer Institute (NCRI), as was the case before the outbreak of full-scale war. The Western Ukrainian Specialized Children’s Medical Center is also worth mentioning, as it has now become a place where children are sent abroad for treatment under the SAFER Ukraine program.
For about the first six months, from March 2022, there were no children in the pediatric oncology departments for treatment at all. Everyone was taken to clinics abroad. But then the initial referrals began, and the departments resumed assistance in establishing the diagnosis, and those who were not ready to go abroad for treatment began chemotherapy. Of course, there is a shortage of doctors, junior and middle staff in most hospitals. But this is due to the war and the way the hospital takes care of the staff. As for medicines: my parents always ran to pharmacies to buy vials or consumables that they needed right now. But I think that where this is the case, it’s just that the head nurse is not doing her job to the fullest.
If we talk about chemotherapy drugs, they are available, but their quality/effectiveness/evidence has not been controlled by the public for a long time, and the state has taken responsibility for this.
But I would like to note that now, when European clinics take our children for treatment free of charge for the family, they not only help children receive quality treatment, but it is also valuable because Ukrainians can avoid diverting resources and direct them to the needs of defending their country.
– How do Ukrainian patients and doctors perceive this program? What conclusion can be drawn from the program’s work for more than a year now?
– SAFER Ukraine is a humanitarian initiative of the St. Jude World Alliance, which is implemented through the global pediatric oncology community. The virtual command center operates around the clock, reviewing the received patient cards, and coordinators organize the transfer to the clinic that accepts the patient for treatment. Treatment is completely free for the family, with assistance with accommodation and social payments.
This initiative has become a serious support. And now I am not talking about a different quality of treatment, protocols, attitude, system…
I am not idealizing treatment abroad as a panacea and a guarantee of cure. I mean that for us, this whole story with treatment abroad had a very unexpected effect. A child is admitted for treatment to a clinic that accepts him or her. It will be a clinic with experience in treating this pathology. The child is examined, the diagnosis is double-checked, and the treatment path is studied. That is, the clinic is responsible for accepting the child for treatment. They do not just continue the treatment protocol that they started in Ukraine, but also take responsibility and are interested in the cure. This is what we tell parents of children with cancer, and we have contact with many parents and doctors. And it turned out to be unexpected for us that many children had their treatment protocols changed because they were treated according to outdated ones, while newer ones were available. Moreover, it turned out that some of the drugs used to treat children in Ukraine have long been discontinued in Europe, as they have been proven to be ineffective. Frankly speaking, it was a bit of a shock for us, we did not expect it, because we had heard from our doctors that they use modern European protocols.
I would like to emphasize that by order of the Ministry of Health, when a child is admitted to the department, parents must be informed that they have the right to receive treatment abroad. Moreover, parents have to sign that they have been informed about this possibility. And we know that it is possible to say that you are afraid of a foreign country…
– How do you assess the readiness of Ukrainian patients for treatment abroad?
– I believe that everyone who is primarily concerned about the outcome of treatment goes abroad under the SAFER Ukraine program. Even if I offend some parents with this, I will not change my mind, but I understand that they have the right to do what they do – it is their decision. As for me, it is better to adapt to new conditions while treating a child than to run into the hallway during anxiety, despite the child’s condition, being scared yourself and scaring the child.
But the parents’ decision does not affect our decision to help the child. We will support parents in any case. Parents of children with cancer need to understand that thanks to modern technology, there is no language barrier, and that abroad our mothers are asked to stay with their children, not to control the treatment process.
In general, people abroad are shocked by the skills of our mothers and their understanding of the treatment process.
– How many children with cancer in Ukraine go abroad for treatment?
– Frankly speaking, I would like to see 100% of them go, but some are afraid, some do not realize this possibility. As for the largest children’s hospitals, I can say that today there are 23 children in the NICU, 18 children in the pediatric oncology department of Okhmatdyt, some children in Verkhovyna, some in the Western Ukrainian Medical Center in Lviv, and some in regional oncohematology departments. According to our estimates, about 60% go abroad. And they go not only under the SAFER Ukraine program, but also on their own.
– How much does the transfer to the latest protocols increase the cost of treatment abroad?
– We can’t calculate this because patients in foreign clinics are treated at the expense of the state that received them. They don’t even know if there is a pharmacy in the clinic. And these are not only drugs, but also studies and therapies that are not available in Ukraine. But they are in the treatment protocols, and the clinic provides them. Each child is treated individually. It happened that a child was admitted to the hospital, and they believed that this child should not undergo an autotransplant because he or she was too underweight. Although the NRH insisted on this procedure. After private conversations, they explained to us that our children arrive extremely exhausted and heavy.
We would like the doctors who received our children to speak about this at their conferences, including SIOP, so that we could hear a real assessment of their condition and treatment to understand how well the main specialists of the Ministry of Health are doing their job.
– There is an opinion that foreign clinics accept those patients who have a chance, and do not take incurable patients? Do you agree with this?
– Everything is individual and each case has its own solutions. It is impossible to say so in general. If the patient is incurable, the family should consider whether to go abroad. A child can receive hospice support in Ukraine as well. But we have a boy who was denied treatment abroad under the SAFER Ukraine program because his discharge summary said he was a palliative patient. Of course, he continued to be treated at the NIR, and the prescribed drug is giving good results. However, this drug needs to be purchased, because the hospital does not have it. For one course, the child needs 4 vials worth UAH 156 thousand. And there should be more than 1-2 such courses. This case looks like some kind of manipulation on the part of our doctors or just someone who felt like God. There is no order of the Ministry of Health stating that palliative care patients cannot use the SAFER Ukraine program.
– How does the foundation work with clinics, what kind of help can they provide?
– It’s a pleasure to work with and we want to support those who are interested in development, learn and understand how and what they want to give for the benefit of the patient. We work primarily with such people. When we receive a request from a clinic, we monitor the problem and get to know them personally. If we see people who are passionate about their work, we support them.
This year we will continue to restore the transfusion department of the NIR. Their work has saved patients more than UAH 2 million over the past year: this is the amount patients would have spent on blood purchases. The Filatov Institute of Ophthalmology in Odesa received from us a repaired sensor for an intraocular ultrasound machine, which had been damaged during a patient examination: a child waved his hand and the sensor fell. And this is a leading ophthalmological institution in Ukraine. Now we have received a request from the speech therapists of the rehabilitation department of the NIHR to buy them equipment, and there are 182 items.
Our job is to be helpful in the details for the whole to function.
– What was the total amount of aid you provided in 2023? What are the priority areas for 2024?
– Over the past military year, the Foundation provided assistance worth UAH 3 million. All the reports are already available on the website and social pages.
This year, the priority will remain targeted assistance to patients, psycho-social support for children and parents undergoing treatment, such as creative workshops in the wards, and the Necklace of Courage project. We would also like to hold our annual meetings. There are intentions to develop rehabilitation or, rather, resocialization.
Today we are talking about a more complex and comprehensive rehabilitation after treatment. The goal is to restore the child as much as possible, help him or her to attend school independently, participate in entertainment with peers, return to school, be able to find a job he or she likes, not one that will be hired, and improve many other life situations.
