This podcast is a continuation of our March 3 show, “Living with DMG: Scientist Father Philip Tan blazes a Trail for Xavier“, where Xavier’s father Philip gave us and extensive window into the life of his family and how it had changed since the diagnosis of a deadly brain tumor. In part 2 we address more closely the restrictive nature of clinical trials, and the fact that using drugs off trial allows flexibility to use other drugs, supplements, and other therapies in combination. Also, the family was discouraged from traveling while there were no promising clinical trials being offered at their local children’s hospital; Philip thought, “It shouldn’t be so hard,” as he was seeking ONC201 and found through social media that he could obtain it for Xavier in Germany, of course for an enormous cost. Philip is intent on sharing his information, raising awareness and blazing new trails so that others won’t have to go to the lengths–many of which have not been as effective as he had wished–to extend and save the life of his son.
During our advocacy report we highlight the Give Kids A Chance Act, H. R. 5416 which ensures that children have access to combination therapies in clinical trials, addressing the restrictive nature of the current system for clinical trials for children with cancer to which most families are limited, and other hopeful measures such as Gabriella Miller Kids First Research Act 2.0 (H. R. 623), and the DIPG Awareness Resolution H. Res. 404 which draws attention to the urgent, unmet needs of all children with cancer using the powerful example of DIPG.
Philip will be presenting his story at the Moonshot4Kids Congressional & White House OSTP Briefing on Tuesday, May 17, 2022, with 2 other patient families, philanthropic and industry leaders, and leading scientists in pediatric neuro-oncology.