Childhood cancer: SUS service wins international award – 10/11/2023 – Balance and Health

Laura, 6, has been treating a brain tumor since 2019. She underwent surgery and chemotherapy for a year and a half, and the cancer regressed. In October last year, however, there was a relapse and the girl resumed chemotherapy sessions.

While receiving the infusion at the pediatric oncology service at Hospital Santa Marcelina (east zone of São Paulo), hugging her doll, she observes the group approaching and shouts: “hi, president of Tucca! I know how to speak English. Do you want to see ?” And she repeats the instructions she usually hears on the São Paulo subway.

Pediatric oncologist Sidnei Epelman, president of Tucca (Association for Children and Adolescents with Cancer) and who runs the oncology service, approaches the girl and starts a conversation. Laura and her mother, Adriana Vicente, live in Suzano, metropolitan region of São Paulo, and travel to the hospital once a week for treatment.

The girl is one of the children who have benefited from precision medicine, an approach that allows for better choices of medicine and more appropriate doses, which increases the chances of a cure and reduces side effects.

Thanks to a partnership between Tucca and Santa Marcelina, which has existed since 2001, children and adolescents with cancer treated by the SUS have had access to genetic mapping of tumors and more personalized treatments.

Developed by the pathology and molecular biology laboratory, maintained by Tucca, this work has just received an international award (Bayer Popia 2023), aimed at initiatives that tackle inequalities and improve access to oncological care for children with cancer around the world.

“To treat cancer today, we need to have details of the disease. With medulloblastoma [tumor cerebral], we know that there are four subtypes or even more. By knowing what the molecular change is, we can know what the aggressiveness is and can treat it better. I can, for example, reduce radiotherapy and, with that, reduce the sequelae in the future. I heal less aggressively”, explains Epelman.

One of the few in the country specialized in pediatric tumors, the Tucca laboratory is responsible for analyzing tumors in children and adolescents undergoing treatment at Santa Marcelina. It also investigates, free of charge, samples from partner institutions not only in Brazil but also in other Latin American countries. The material is sent in paraffin blocks by post, avoiding the displacement of patients.

Biomedical scientist Antonio Fernando da Purificação Júnior, coordinator of the laboratory, says that the work goes beyond analysis and a report on the genetic changes observed in the tumor samples received. “We discuss with the oncologist whether the clinical issues match the genetic issues and what are the best paths to take.”

Currently, studies of several types of pediatric tumors are underway in the laboratory. These include retinoblastoma, osteosarcomas, acute lymphoblastic leukemia, chronic myeloid leukemia, neuroblastoma and rare brain tumors.

In eight years, the diagnosis of tumors in children and adolescents has tripled in Brazil, but many cases are discovered late, when the chances of a cure decrease. “Unfortunately, treatment has also been inadequate and insufficient, and a lack of resources limits the provision of care and access for patients,” says Epelman.

The US$50,000 (approximately R$257,000) received from the award will be used to develop a low-cost molecular classification algorithm, specific to medulloblastoma, the most common form of brain cancer affecting children and adolescents.

According to Epelman, the costs of the laboratory, some oncology medicines that are not on the SUS list, transportation and food for children and their companions are covered through donations and the events that Tucca holds.

“We can complement what the SUS cannot supply. It is a sustainable model. There is no point in carrying out genetic testing, offering a medicine costing R$ 100 thousand, if the child from Cidade Tiradentes [zona leste de São Paulo] can’t get here. Therefore, it is important to offer comprehensive assistance.”

The service has an overall survival rate above the national average: 80% versus 64%. Each year, Tucca injects a total of R$12 million into the pediatric oncology outpatient clinic — around R$1.5 million into the laboratory.

The oncologist states that a constant concern has been access to high-cost medications that are not in the SUS. “We have succeeded, but the speed [com que essas novas drogas são lançadas] It’s big and we don’t know what it’s going to be like. There’s no point in making the diagnosis, finding the mutation and not giving the medicine the child needs.”

He cites the example of the drug blinatumomab, offered to children who have relapsed leukemia. The drug costs around R$150,000 per patient. Of the 40 new cases of leukemia that the service sees per year, on average, five children will need this medication.

“The medicine represents a second chance at life for these children. I can give it to those in our service, but not to everyone in Brazil who comes to us.”

Tucca also supports titanium prostheses, which cost between R$18,000 and R$24,000, in cases of tumors that lead to amputations. Patients undergo rehabilitation sessions and have 15 days to adapt to the prosthesis. SUS offers a simpler prosthesis, and the wait can be up to two years.

“With the titanium prosthesis, the patient can have better grip, can develop the gait process and training much faster”, says the service’s physiotherapist, Luiz Henrique Nicolau.

Felipe Scheneider, from Juína (MT), was diagnosed with osteosarcoma in October last year, at the age of 17. He used to fight judo and started to feel a lot of pain in his knee.

On January 11th of this year, the young man needed to have his leg amputated. Then he had chemotherapy. In the following months, a control tomography showed a metastasis in the lung. He had another surgery and is in the penultimate chemotherapy session. He is also preparing to place the prosthetic leg.

Last week, he tested his new leg for the first time. In rehabilitation, which involves electronic games, he trains his new gait. “I can’t wait to walk on two legs again and have my freedom back”, says Felipe, now 18 years old.