'Patients are not a cancer diagnosis, they are still children': Sanar Foundation

In Colombia, 1,322 new cases of cancer are reported annually in children under 18 years of age, according to figures from the Ministry of Health. In addition, according to the National Cancer Institute (INC), around 500 deaths from cancer are recorded annually in the country in children under 14 years of age , with acute leukemia being the leading cause, with 256 deaths, followed by malignant tumors of the central nervous system and lymphomas.

Providing support to the patients who hide behind these statistics and to their families is the mission undertaken four decades ago by the Sanar Niños con Cáncer Foundation, a Colombian non-profit organization that since 1985 has provided support to nearly 20,000 children with cancer from Cundinamarca and other municipalities in Colombia where there is no pediatric oncology treatment through programs to promote survival, psychological support, and social support.

On the occasion of the foundation's 40th anniversary, EL TIEMPO spoke with Melba Rojas, executive director, about its evolution, the challenges of supporting children diagnosed with cancer, and the outlook for this disease in the country.

In 40 years of supporting families of children with cancer, the balance is that more than 20,000 children have had their lives saved thanks to the support and guidance of the Sanar Foundation. That is the most important thing.

In its first 10 years of operation, what we did was bring medicines from the United States, which were not available here in Colombia, to take them to hospitals in the country and with them help children with cancer. Later, pediatric psychological units were implemented in different hospitals in Colombia. After the arrival of Law 100, the foundation focused on psychosocial help to families and patients. At this time, the National Cancer Institute is where Sanar does its work and where it is caring for children who come from all over the country with a cancer diagnosis. The Foundation basically does is accompany the children so that they stay in their treatments, adhere to them and do not have to suffer any need that would cause them to stop being cared for at some point.

The most important lesson we have learned is that children, young people, the patients we care for are not diagnosed with cancer. They are still children, they are still young, they are still full of dreams, of goals for life and as such we have to continue treating them, accompanying them. A cancer diagnosis cannot end everything in life nor can it decide what I am going to do in my life. It is a moment, an opportunity, it is difficult but it passes and I can return to my life project with complete confidence and greater strength.

This is a time when I would tell families who are being tested, when they have to strengthen themselves and use all the support networks they have. In many families there is the uncle, the godfather, the grandfather, especially the grandparents, the grandparents are definitive. All these family support networks, all these people with whom there is affection, must be activated and we must unite more than ever around this little person who requires affection, care. These networks must also be activated at an institutional level, at school, where the child is studying.

Unfortunately, in many cases, in the face of such a difficult and critical moment in the family, it can also happen that a member of the family leaves because they cannot bear this situation. This is one of the most critical issues where we are there to support them through therapy sessions, to understand that we were going through a moment in which we are all going to make it and we all do our part and come together to save this life that is in danger.

On average in Colombia right now, there are 8,000 children with cancer and annually we are talking about between 1,500 and 1,700 new diagnoses. At the National Cancer Institute, which is where we treat children, an average of 400 children are arriving per year and of these, we are treating an average of 220 children at the Sanar Foundation.

According to our estimates, at this time between 50 and 55 percent of children who arrive with a diagnosis of cancer are being saved. Our goal and what we want to achieve in the future is to reach the percentages of advanced countries where 80 percent are being saved. What we want is to be able to reach all the children who arrive at the Cancer Institute.

There is a need for more pediatric oncologists, more specializations. For example, it is incredible, but I think there are two or three pediatric hematologists in the country, and there is also not one radiologist who is an expert in pediatrics for very young children. The most important units for pediatric cancer care are in the capital, in Bogotá and in the big cities, but if a child is diagnosed in a remote region of our country, while the diagnosis of cancer is confirmed, the child has already had a very complicated journey and his cancer is already advanced.

At this time, the only institution that we are serving through a collaboration agreement between the parties is the National Cancer Institute and our capacity at this time is to serve about 220 children . But the goal of the foundation is to grow and be able to reach the population that comes to the institute and to be able to open another hospital where we can serve the children. We have several very big goals, but everything also depends on the sustainability of the entities, the budgets and having many resources to be able to help the children.

Starting April 1, we are launching a campaign to sell groceries and support children by making a donation through a payment button. It is important that you also support us as much as possible with money, because we are a foundation that has professional staff who must be paid. We have several sources of funding, one is recycling, another source is the sale of vouchers, including birthday or funeral vouchers. And the third source is donations, which can be sporadic or recurring.