Diffuse intrinsic pontine glioma: a clinic in Mexico, social media, and unpublishable data
Diffuse intrinsic pontine glioma (DIPG) is a rare aggressive brain tumour that affects children. It is almost systematically lethal. This is unacceptable for all, but especially for parents. Many parents, desperately and understandably, seek therapeutic alternatives to the current (lack of) standard of care.
Starting in 2017, many parents were led to conclude that a unique therapeutic opportunity was available in a clinic in Monterrey, Mexico. There, a lucrative unproven cancer treatment coined super selective intra-arterial chemotherapy was offered. Each treatment cycle cost between US$20,000 and 30,000. It had to be renewed every 4 weeks. More than 60 families from around the world brought their kids for treatment there, hoping for a miracle cure.
Because the doctors of this clinic were not transparent about their treatment and their results, the Anticancer Fund wanted to collect data posted online by parents of children treated over there. Our intention was to describe the results of this treatment, in order to help parents (and their paediatric oncologists) considering treatment there make an informed decision.
However, this didn’t go as we intended. We rapidly realised that what we intended to do was infringing privacy and ethics principles. This perspective paper in the Lancet Oncology reports on our frustration of not being able to help those families. It also attempts to draw lessons from this very sad story that affected many families worldwide. Preventing history to repeat itself will pass by a large-scale coordinated and collaborative strategy to tackle this complex lethal disease.