The British healthcare system is under fire yet again for a controversial decision that appears to restrict access to critical care for seemingly absurd reasons.
The parents of 11-year-old Ronnie shared that he was denied treatment for a brain tumor because the growth is one millimeter too small to qualify for the therapy that could extend his life. He was told he had mere months left in his life after a grim diagnosis of diffuse midline glioma—a fatal tumor typically found in the middle structures of children’s brains—back in March.
Both chemotherapy and radiotherapy made little impact on the tumor, although the lessened size was enough of a change to disqualify him for an experimental cancer drug called ONC201. It is currently being tried on both kids and young adults who are suffering from serious brain tumors.
The boy’s father, Nick Hood, called the ineligibility shrinking tumor and the ineligibility for the drug a “double-edged sword.” He explained that they are now left “sourcing it ourselves” to provide him treatment unless the tumor reaches a size that makes him eligible again for the trial.
Each pill costs 700 pounds, which amounts to 4,000 pounds a month. More than 30,000 pounds have been raised so far through a GoFundMe page launched by the family. Young Ronnie first began suffering from bad tingling in fingers and pain in his neck about a year ago.
The general practitioner his parents took him to blamed the worrisome symptoms on the boy spending “too much” time “playing on his phone.” An MRI scan revealed a massive tumor on his brain stem, close to the top of his spine.
The lack of treatment is eerily similar to other cases in which patients have fought the British medical system to get experimental treatment. Last year, a 19-year-old died her case to be allowed to seek medical trials in Canada was heard by the court. Her family recently won their appeal with the NHS.
In 2017, a baby with a similarly rare mitochondrial disease died before his first birthday—after the healthcare system determined that he must be removed from life support and was not permitted to travel to the United States for experimental treatment.
