What is the problem?
The war took away from cancer patients the opportunity to receive full and unhindered medical care. Cancer patients die every day from the effects of war, direct or secondary. During eight months of full-scale russian aggression, about 900 medical facilities were damaged. There are not enough doctors and necessary available drugs. And patients in the temporarily occupied territories are simply doomed. Thus, during the occupation of Kherson and part of the region, the number of patients with neglected stages of cancer more than doubled. This happened because people could not seek help in time.
More than a million people who have two wars—one outside with the russian aggressor and the second inside with cancer— need support and help now more than ever.
What is the solution?
Before the full-scale war, five Ukrainian women who defeated cancer created the Inspiration Family fund, which helps adult cancer patients.
Even under war conditions, the foundation does not stop the fight against cancer. Its founders continue to be ambassadors of adult cancer patients in Ukraine and the international arena. Today, one of the foundation's challenges is helping patients get the necessary treatment despite everything.
How does it work?
Hear cancer patients
The co-founders of the Inspiration Family support fund for adult cancer patients, Anna Uzlova, Daryna Brykailo, Mila Reutova, Yulia Balan, and Inesa Matiushenko (pictured above), are women who have undergone cancer treatment.
"We have different diagnoses but similar stories," says Anna Uzlova, foundation director. "We went through chemotherapy, hair loss, surgeries, infertility, cancer recurrence, fundraising for treatment on social media, lack of mental and emotional support, stigma and cancerphobia in society, and much more. From our own experience, we saw how little support, information, and assistance there is in adult oncology, and we decided that it should not be like that."
At first, each woman created their own projects for patients—support groups, photo sessions, and art therapy classes. At one point, the five women met at one of the events and agreed on values and vision. That's how it all began. Afterward, they organized 25 motivational lectures in Kyiv and Lviv, where the speakers were cancer patients. After all, as the initiators say, for those fighting cancer, it is vital to be part of the community, to hear the experiences of others, and to receive quality and evidence-based information about cancer. And in 2019, they held First Oncology Patients Forum, where patients and doctors exchanged knowledge and simply communicated. In a year, the activists decided to join forces in one project and create a support fund for adult cancer patients, Inspiration Family.
Before the full-scale war, the foundation had three areas of activity—systemic changes in the field of adult oncology, informational and emotional support for adult cancer patients, and cancer education. Now there are more challenges.
"I'm waiting for a rocket to fly into my house, then my suffering will end"
Since February 24, the foundation's work format has changed, and the activists began another direction of the foundation's activity—the coordination headquarters.
On the very first day of the full-scale war, hundreds of messages from alarmed patients poured into the foundation's personal pages and social media. What should cancer patients do? Are hospitals open? Haven't all the doctors left? Will there be medicine? What about radiation therapy and surgery? The patients were scared and confused. Palliative care patients who suffer from pain and depend on painkillers have been cut off from medical care and wrote: "I'm waiting for a rocket to fly into my house, then at least my suffering from pain will end."
"These words broke my heart," Anna Uzlova recalls.
"We were drowning in requests, trying to respond to everyone, and despairing when we could not help. The great solution was to create a Telegram channel for oncology patients to provide information quickly. There we wrote about the work of cancer centers, contacts of oncologists, psychologists who consult online, lists of working pharmacies and laboratories, medical evacuation, availability of medicines and humanitarian aid in cancer centers, etc. Even the doctors thanked us very much for this solution because they shared information with cancer patients and could save their time."
At that time, no one knew whether cancer centers would be able to work in the conditions of war. In the first days, only 19 out of 28 cancer centers in the whole country were working. Kharkiv and Chernihiv were under fire—it was difficult to establish contact with them. The Inspiration Family understood that it was necessary to evacuate cancer patients abroad. Thanks to connections with the Youth Cancer Europe organization, they learned that the EU introduced temporary protection status for Ukrainians, which meant that people fleeing the war could get the same rights as residents of the country they came to, including medical insurance.
The foundation developed a patient registration form published on social media. A team of volunteers was assembled to process these requests, call patients to find out details, and collect medical records, if available. Volunteers translated the documents into English, the foundation passed them on to colleagues in Youth Cancer Europe, and then they found hospitals ready to accept them for treatment. But the first task for the patient was to leave the front-line zone or the zone of active hostilities.
However, not always everything went according to plan. Relatives took their relatives in severe condition or in advanced stages of cancer in the expectation that they would definitely be helped abroad. However, after doing all the research, the doctors could not offer treatment, only hospice or pain management. It was a big blow for relatives and patients.
"As much as we would like there to be magical doctors somewhere who cure everything, unfortunately, there are situations when it's impossible to cure a patient, and it does not depend on where the patient is located—in Ukraine, Germany, or Israel. Therefore, before sending them for treatment abroad, the foundation involved oncologists who reviewed all the documents and wrote advisory opinions. There were situations when the patient did not have to go anywhere, and he could receive all the treatment for free in Ukraine," says the co-founder of the fund, Inesa Matiushenko.
In addition, the foundation provides information on the availability of drugs in cancer centers and the possibility of free examinations upon referral from a family doctor.
"We are constantly in touch with cancer patients, and we also conduct regular surveys to monitor the dynamics of what challenges they faced at the beginning of the war and what challenges they face now. At the beginning of the war, patients had difficulties obtaining medicines, undergoing examinations (PET CT, MRI, CT), lack of medical personnel, and the possibility of getting to the hospital. Now the issue of medicines remains just as acute. When we ask patients what they currently lack most for treatment,
- 18.4% answered that there is a lack of psychological support,
- 15.2% say that they don't have money to go to the hospital, and the security situation does not allow it (constant shelling, for example, as in Kharkiv),
- 84% do not have enough money for medicine,
- and 62.4% answered that they do not have money for paid examinations.
But here is an important point: we explain that the state pays for the examination. You can undergo the examination for free if there is an electronic referral. The patient does not have to spend their money for what the state paid for, and if money is demanded, you need to file official complaints, for example, by calling the hotline of the National Health Service 1677," Anna Uzlova explains.
What does the fund do today?
Currently, the foundation's work includes the following:
- Advocacy of the rights of cancer patients at the national and international level
- Coordination and consultation of cancer patients treated in Ukraine.
- Assistance in finding treatment abroad for cancer patients who cannot continue it in Ukraine.
- Finding and providing humanitarian aid to cancer centers.
- Fundraising for drugs
Cancer patients or their relatives can contact the Inspiration Family with the following requests:
- What to do after oncological diagnosis; was established
- Finding specialist contacts (oncologists, psychologists);
- Finding out whether the state buys prescribed drugs, which oncology centers have them available, or as humanitarian aid.
- Getting information about medical evacuation for free treatment abroad.
The foundation collects all requests for the coordination of treatment of cancer patients in Ukraine in a registration form.
About five months ago, Ukraine's Ministry of Health launched the Medivac medical evacuation program in cooperation with the European Commission and involved patient organizations. Therefore, when oncology patients contact the foundation with a request for medical evacuation, its employees help them apply for the program of the Ministry of Health. This is a chance for Ukrainian cancer patients to continue treatment abroad for free during the war.
For instance, Svitlana Kovtunenko, who has breast cancer, sought help and received the necessary treatment in Germany: "Thanks to the Inspiration Family fund, I continue to live and receive treatment that has long been unaffordable for my family. I am in Germany, and thanks to therapy with an innovative anti-cancer drug, I feel great. I'm waiting for the examination results to determine how the drug works."
During the full-scale war, the fund processed more than 1,500 requests from cancer patients. Now Inspiration Family has about 70-80 requests every month. With the help of the fund, more than 120 patients went abroad for treatment, more than 80 received translations of necessary documents, and more than 30 received consultations from doctors in Ukraine.
Also, cooperation with Israeli specialists has been established thanks to the foundation's work. The professor, hematologist, oncologist, and head of the bone marrow transplantation and immunotherapy department, Polina Stepensky, who lives and works in Israel, invited employees of the foundation and doctors of the National Cancer Institute to Israel. There, doctors can share their experiences, show how the oncology service works in Israel, and get acquainted with patient organizations, oncologists of various fields, and social workers. The foundation notes: Israeli doctors are ready to teach and share this experience with Ukrainian colleagues. Therefore, the internship of Ukrainian specialists in Israel will begin at the end of November.
Before the full-scale war, the fund implemented the Peer Counselor project, where oncologists taught the procedure and how to support and communicate with cancer patients professionally. A peer counselor is a person who has undergone treatment and adapted to their condition. They are neither a doctor nor a psychologist but certified specialist who has undergone a series of training in psychological support. Hence, they understand how to communicate with a person in crisis. Now, equal consultants work in the coordination headquarters, provide help online, communicate with patients, and coordinate requests for treatment in Ukraine and medical evacuation.
The foundation cooperates with Ukraine's Ministry of Health, the National Health Service, oncologists from public and private clinics, and international organizations. And it is always ready to communicate with the media: "Coordinating the treatment of cancer patients abroad, we asked them how they found out about medical evacuation, the answer was often: 'We saw you on TV,'" the foundation shares.
What does the fund not do?
As Anna Uzlova noted, the foundation does not collect funds for patients directly, as it still needs a material base. "But we regularly write letters to pharmaceutical companies and try to get grants to purchase drugs for cancer centers to cover the need for more people."
Even more helpful solutions!
This fall, the foundation's founders set a goal of raising UAH 300,000 to purchase drugs necessary for women with breast cancer. To do this, they organized a charity run, Race for the Cure. This year they held it online. The event was supported not only in Ukraine but also worldwide—in Poland, Germany, Austria, Great Britain, Spain, Finland, and the USA. Twenty teams and 196 participants joined the race. As of November 10, most of the required amount has been collected.
In 2023, they plan to hold the 5th Forum on cancer patients. It will be dedicated to cancer treatment in Ukraine during the war, and representatives from Ukraine and international organizations will be involved in the discussions.
Despite the war and difficulties with planning the future even a week in advance, Inspiration Family doesn't give up and works for the future. They believe that international cooperation, involvement of international donors, and considering the needs of cancer patients during the planning of state policy and implementation of state programs is the key to making the treatment and life of cancer patients easier. The fund believes that while international attention is focused on Ukraine, it is necessary to attract as much aid as possible to build long-term partnerships to make Ukraine a country where cancer is curable.
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