Beyond the Cancer Diagnosis: Dialogue with Carmen Uscatu, by Adrian Pogacian

In this “Beyond the Cancer Diagnosis” interview, Adrian Pogacian speaks with Carmen Uscatu, co-founder of the NGO Give Life and a trailblazer in Romanian healthcare. Uscatu shares the story behind building Romania’s first comprehensive pediatric cancer hospital, her international collaborations, and her vision to ensure that children with cancer in Romania receive the same quality of care as those in Western Europe.

Carmen Uscatu is the President and co-founder of Dăruiește Viață / Give Life, one of the most well-known NGOs in Romania and the NGO that has started and has implemented the initiative #WeBuildAHospital – building a children’s Hospital for scratch, exclusively from donations and sponsorships, a Hospital dedicated to ensuring multidisciplinary care to children with severe diseases, with a focus on cancer. She started volunteering in her free time before founding Dăruiește Viață, in 2012, with the purpose of drastically changing the way medical care is provided in Romania.

By the end of 2023, Dăruiește Viață had invested over 76M EUR in the public health system, implementing infrastructure projects, donating medical equipments, supporting patients and medical staff. The Hospital built in Bucharest is currently functional, treating children in the following specialties: oncology, neurosurgery, surgery, ICU, and operating theatre with 5 operating rooms. In addition, the Hospital will include in the near future a transplant department and a radiotherapy department.

Besides the Hospital, Dăruiește Viață has modernised and brought to nowadays standards oncology departments for children and adults in 8 hospitals across the country, has built 20 clean rooms thus tripling Romania’s transplant capacity, has built and equipped two laboratories for in-depth diagnosis of leukemia, has built two modular ICU hospitals during the pandemic and has donated over 17 tons of PPE. The Hospital project continues with the NGO planning to develop the project into the first pediatric medical campus in Romania.

Adrian Pogacian, MS Psychology, clinical psychologist with executive education in Psycho-oncology, holding a degree in Global Health Diplomacy from Geneva Graduate Institute. Currently, researcher and associate lecturer with focus on Impact of Cancer Diagnosis on Couples and Families, Communication in Cancer Care and Posttraumatic Growth. His expertise is on Coping with Cancer and managing Fear of Recurrence.

Additionally, Founder of INCKA Psycho-oncology Center, Host of Beyond the Cancer Diagnosis Interview Series as well as Writer and Host Content in Psycho-oncology at OncoDaily.com, co-author of the first Romanian Multimodal Care Guideline in Pediatric Onco-hematology, active contributor to the International Psycho-oncology Society, presently IPOS Fear of Cancer Recurrence SIG member and IPOS Early Career Professionals in Psycho-Oncology Committee founder member.

Cancer Isn’t Fair, but Care Should Be: The Struggle of Children with Cancer in Romania

Adrian Pogacian: Dear Carmen (if you allow me), in the field of oncology, nowadays, everyone is preoccupied with research and practice. You’ve built a hospital! Could you reveal for our audience the idea behind this tremendous project?

Carmen Uscatu: The idea behind this big project was very simple, simpler than the audience might imagine, because it started with a single toilet. At “Marie Curie” Children’s Hospital in Bucharest, when the oncological department was full, 31 children and their mothers—62 people in total—had access to only one toilet. Yes, cancer comes with the added challenge of having to endure waiting in line for basic facilities like a toilet or a shower.

According to Maslow’s hierarchy of needs, you must first address the basics. And so we did: we built the infrastructure. In 2015, Oana and I, as founders of Give Life, decided to build toilets. But, technically, it wasn’t possible. Our architect, Raluca Șoaita, suggested: “You should build another building.” What started as a seemingly far-fetched idea turned into reality. Nine years later, in 2024, we have built not only a building, but a 12,000-square-meter hospital with space for radiotherapy, oncology, a stem cell transplant unit, surgery, neurosurgery, an operating theater, and an intensive care unit—a comprehensive facility where, for the first time in Romania, a child with cancer can receive multidisciplinary treatment.

In Romania, there are 12 hospitals where children with cancer are treated. Most of them are treated in adult hospitals, moving from one place to another for surgical, neurosurgical, or radiotherapeutic procedures, even for a simple implantable catheter. They also don’t have access to a pediatric intensive care unit. This is the only place where a child can be treated with access to all necessary disciplines. If they need a dentist, an endocrinologist, or a gastroenterologist, they have one.

At Give Life, we say that we build and rebuild departments, hospitals, and hopes. This project brings hope—for parents, for clinicians, and for children with cancer in Romania, so that they can have the same chance of survival as children in Western European countries, with a better quality of care and life.

Three hundred and fifty thousand individual donors and more than eight thousand companies believed in this project and supported it with donations and sponsorships. We invested 53 million euros to make this hospital possible. Isn’t this amazing? It is a place that revolves around the child, not the disease. We have spaces for reading, a cinema, an interior garden, and a radio station to nurture the soul. There is a playroom on each level and a room where parents can meet each other. We also have an astronomical observatory, where children can see the stars and dream about infinite possibilities.

Adrian Pogacian: You mentioned the partnership with Prinses Máxima Centrum and St. Jude Children’s Research Hospital. What does this collaboration consist of?

Carmen Uscatu: Cancer is a rare disease for children. In Romania, there are 430 new cases of children with cancer each year, compared to 100,000 adult cases. Because it is a rare disease, clinicians need to collaborate to increase survival rates and improve the quality of care and life for these children. This collaboration should happen both within the country and across borders. Both the Prinses Máxima Center and St. Jude Children’s Research Hospital have agreed to collaborate with the medical teams at Marie Curie Children’s Hospital in Bucharest to help us achieve the same results as their state-of-the-art clinics.

What does this mean? It means that clinicians at Marie Curie, including oncologists, surgeons, orthopedic surgeons, radiologists, endocrinologists, neurologists, radiation oncologists, and laboratory staff, have begun collaborations that include fellowships, observerships, mentorships, participation in tumor boards, and obtaining second opinions for difficult cases. It also means that nurses are participating in courses and conferences to enhance their knowledge. We conduct genetic tests, when needed, at the Prinses Máxima Center, and together with their leaders, we’re developing plans to improve those departments in need.

Doctors and nurses from the Prinses Máxima Center visit Romania every month. Next year, we hope that Marie Curie can start to participate in clinical trials. We aim to partner with the Prinses Máxima Center in projects funded by the European Union for palliative care, psychosocial support, and other initiatives, in order to build capacity for the hospital we have built.

With these two collaborations, we no longer feel alone. We are part of a global team and have a significant opportunity to become one of the best centers in Eastern Europe.

Adrian Pogacian: When a child gets sick, everyone around him gets involved. A crisis situation such as a cancer diagnosis can disrupt the family structure and affect the quality of life and well-being of all family members. The family is the first line of support for the adaptation of the pediatric patient to the diagnosis, treatment, and all the oncological trajectory that he has to go through. Will your hospital ensure psychosocial oncological support to patients and their families?

Carmen Uscatu: Cancer affects the entire family: the child, their parents, and siblings. Psychosocial support is an essential part of the treatment in childhood cancer, yet it is often neglected and fragmented. While there are psychologists and social workers in the hospital, they are not dedicated specifically to children with cancer. Additionally, NGOs hire psychologists to work a few hours per week in the oncology department. However, there is significant room for improvement.

We hope to develop this essential service by joining a European project, with Marie Curie Hospital as a partner, alongside organizations like SIOPE and the Prinses Máxima Center, which have already applied for funding. If the project is selected, we can map psychosocial support, provide training for specialists in the psychosocial field as well as those outside it, and raise awareness about the importance of integrating psychosocial services into the care of children with cancer. We can also advocate for including these services in all hospitals where children with cancer are treated and train staff to deliver care at international standards.

These services will significantly help children and their parents, and they will also be a valuable resource for clinicians facing the daily challenges of providing high-quality care. At a St. Jude conference, I heard that we can measure the success of our efforts by the number of teeth we see in a child’s smile. I believe that by taking care of the emotional and social needs of children with cancer and their families, we will indeed see more smiles.

Adrian Pogacian: What is the impact of a cancer diagnosis on parents? How do you see them in terms of sadness and hope?

Carmen Uscatu: In our country, cancer is associated with death, and it carries a stigma. It is the news you never want to hear as a parent. I can’t even imagine what you feel when you hear, “Sit down. Your child has cancer.” It is emotionally devastating, and it’s also financially burdensome. Even though treatment is free for every child in Romania, as a parent, you have to pay for transport, accommodation, and adjuvant medication.

You are alone with your fears. Clinicians try to support you, but they don’t always have the answers, because we lack multidisciplinary teams, extensive training in palliative care, and consistent support from psychological teams, surgeons, physiotherapists, radiologists, and others.

As a society, we are learning how to work as a team and how to complement each other in our efforts for the benefit of the children and their families. There are NGOs that help with transport, meals, non-medical needs, tests, and other investigations, but coordination is essential for all of us.

Looking at how these parents manage to stay by their children’s side, it’s likely that they don’t give themselves the time to be sad. Only their hope and love can help them through these difficult times.

Adrian Pogacian: HOPE is often interpreted differently by patients and doctors. After more than a decade as president of an NGO in Romania, how would you define HOPE?

Carmen Uscatu: To me, hope never stops. I define HOPE as a belief in the possibility of better outcomes. My hope is to save the child, but not at any cost—rather, to save the child so they can have a good quality of life.

We know that not all children with cancer will survive. For those children who don’t survive, my hope is that their passing can be as peaceful and dignified as possible. Currently, this remains just a hope, as there is still a lack of palliative care teams and on-hand psychologists. Pain management is also not routinely integrated into the treatment of children with cancer.

Hope is also about taking action rather than waiting for others to act. These aspects will change with everyone’s contribution. My hope is that all children in Romania and their families can and will receive the best treatment available worldwide. This hope has driven us to build a hospital, to foster international collaborations, and to strive for strong partnerships with all stakeholders, including authorities and politicians.

Adrian Pogacian: And, as for the last question, OncoDaily named you one of the 100 influential women in oncology. What does this recognition mean to you, both professionally and personally?

Carmen Uscatu: I learned very early in life that if you don’t communicate, you don’t exist. How you communicate can make a significant difference in the impact you have. It’s important to talk about what you are doing, but credibility is also built on what others say about you and how you are perceived through their eyes.

I look at the world and the situations I encounter as infinite possibilities I have for doing good. When I received this recognition, I thought it was a great opportunity for our project to increase its visibility. This can help attract people to work at this hospital, draw in sponsors to support the initiative, and bring in ideas that can enhance the project’s impact.

For me, personally, this prize has been a confirmation that I must continue to advocate for this hospital built by Dăruiește Viață, both at a national and at an international level.

Previous editions of “Beyond The Cancer Diagnosis”

Edition 1: Beyond The Cancer Diagnosis: Psycho-Oncological Aspects Of Kate Middleton’s Diagnosis

Edition 2: Beyond The Cancer Diagnosis with Sonia Amin Thomas – Survivorship

Edition 3: Beyond The Cancer Diagnosis: Dialogue with Wendy Lam, Hosted By Adrian Pogacian

Edition 4: Beyond The Cancer Diagnosis: Dialogue with Camille Moses, Hosted By Adrian Pogacian

Edition 5: Beyond The Cancer Diagnosis: Dialogue with Tihana Gašpert, Hosted By Adrian Pogacian

Edition 6: Beyond The Cancer Diagnosis: Dialogue with Amanda Balakirsky, Hosted By Adrian Pogacian

Edition 7: Beyond The Cancer Diagnosis: Dialogue with Dr. William Breitbart, Hosted By Adrian Pogacian

Edition 8: Beyond The Cancer Diagnosis: Dialogue with Dr. Alberto Costa, Hosted by Adrian Pogacian

Edition 9: Beyond the Cancer Diagnosis: Dialogue with Prof. Sophie Lebel, Hosted by Adrian Pogacian

Edition 10: Beyond the Cancer Diagnosis: Dialogue with Darren Haywood, hosted by Adrian Pogacian

Edition 11: Beyond the Cancer Diagnosis: Dialogue with Sarah, Hosted by Adrian Pogacian

Edition 12: Beyond the Cancer Diagnosis: Dialogue with Taryn Greene, Hosted by Adrian Pogacian

Edition 13: Beyond the Cancer Diagnosis: Dialogue with Maryam Lustberg, by Adrian Pogacian