It is about the best care for children and young people with cancer. It’s about optimizing the chances of recovery. And about togetherness. Six university hospitals have joined forces in the children’s oncology network (Kionet), which has been in existence for five years now, in order to regularly exchange information and to enable innovative therapy concepts for their young patients. The network includes the Ludwig Maximilian University (LMU), the Technical University (TU) and the clinics in Augsburg, Erlangen, Würzburg and Regensburg.
400 children are diagnosed with cancer in Bavaria every year. A number that is much smaller compared to around 68,000 cancer cases in adults. This is exactly what “a general problem” is for all children’s oncologists, as Kionet co-founder Irene Teichert von Lüttichau explains. Many cancer drugs are only approved for adults, but not for children. Therefore, according to the 61-year-old senior physician, many off-label applications would have to be made in order to make certain therapies possible. In other words, applications for the use of non-approved medicines or for certain medicines with only limited approved areas of application. According to Lüttichau, many pharmaceutical manufacturers would not see a sales market with so few patients. Although, for example, new studies would show good results for therapy with the drug.
Pharmaceutical companies have to approve more drugs
And now Kionet comes into play. “As a group,” says the head of the pediatric hematology and oncology department at the Mük Clinic in Schwabing and at the Klinikum Rechts der Isar, “we are simply stronger.” So all six clinics tried together to get their little patients involved in studies initiated by pharmaceutical companies. The more people who take part in these studies, the greater the chance that the pharmaceutical companies will see the need for further research and push ahead with the approval of certain drugs for children. Because a children’s hospital alone can usually not provide the required number of patients. “If we succeed more and more, the chances of recovery for the children will be even better,” says Lüttichau.
Kionet is primarily concerned with providing care for the children close to where they live. You network, discuss therapies. Once a week, all leading physicians in the network talk about their patients. And you have a WhatsApp group. If you have questions about medication or if you have concerns, you can exchange ideas with each other. “It works extremely well,” says Lüttichau. “And is super helpful.”
All professional groups are involved in Kionet. “That was very important to us,” says the senior physician. Doctors, nurses, sports and physiotherapists, psychosocial and palliative care professionals also exchange ideas. As well as survivors, i.e. young adults who survived cancer as a child, and also the parent initiatives. According to Lüttichau, without them, many things in the field of pediatric oncology would not be possible. From well-equipped clinic kitchens to WiFi, from the financing of psychosocial services to setting up a playroom – in Germany alone, 40 million euros per year are financed through donations for oncological care, also in order to meet the legal requirements. For example, according to the “Guidelines for Pediatric Oncology”, an “appropriate psychosocial service”.
Bavaria-wide tumor board
According to Lüttichau, Kionet still has a lot planned. On the one hand, work is to be done on enabling a common, Bavaria-wide tumor board at all clinics in the association, i.e. a joint analysis of the cases. The same dietary rules should also apply to the small oncological patients in the six houses. A “clinical trialist” is also to be hired at each of the clinics involved, who, as a specially trained doctor, will take care of the studies and individualized therapies for children.
All reasons why Kionet is presenting the successes of the five-year collaboration at the Bavarian Children’s Cancer Day on Monday. And of course I would like to ask for more support. Working in a network like Kionet is the “future of individual, patient-oriented treatment,” says Julia Hauer, chief physician at the Center for Pediatric and Adolescent Medicine. And that’s why, even if a lot has happened in these five years, adds Lüttichau, “we need more budget”.