By Keir Liddle
Skeptics on twitter are all a flutter over an article in the Guardian reporting on UK citizens who have sought treatment for cancer abroad. The article reports on the emotive situation many parents find themselves in when their child is struck down by a condition science and medicine has yet to conquer.
With the support of patient charity the Neuroblastoma Alliance the article calls into question why treatments under trial are not available to all.
The article reports on two families: The family of Stella Rogers who sought an experimental therapy at the Childrens hospital in Philidelphia (at the cost of £210000) and the Downie family from Aberdeenshire who raised money to take their daughter Olivia to Tijuana and undergo a treatment that could reasonably be described as quackery.
The two stories are strikingly different for a number of reasons. The Rogers family seem to have been lucky enough to select a treatment that is being tested and trialled properly whereas the Downies were unlucky and taken in by promises of false hope in one of Mexicos many cancer clinics.
Olivia Downie was flown to Mexico to undergo a holistic treatment called SonoPhoto Dynamic Therapy which was described as a safe, effective and proven therapy for treating cancer using sound and light. It is not hard to see how someone would come to believe that the therapy offered in Mexico is a revolutionary new treatment given online claims:
There are approximately 3000 published articles about Photodynamic Therapy.
Sonophotodynamic therapy (SPDT) is the modern form of same. There are some 50 publications SPDT based on results in China, England, Australia and Mexico.
The site doesn’t link to any of these numerous studies but it does link to a page of impressive, anonymous, case studies reporting it’s efficacy. They are slick and convincing an it’s easy to see how people could be taken in. Unfortunately for the Downies the treatment failed and they found themselves stranded in Mexico and needed a campaign of donations to return them home. Where Olivia sadly died.
The Rogers were more lucky in the treatment they sought abroad a combination of anti-GD2 Antibody with GM-CSF, Interleukin-2, and Isotretinoin which has been reported as more effective when it is added to standard therapy. Research into this combination of immunotherapy agents seems to have been initially promising though the research seems far from complete.
The research found that:
Immunotherapy with ch14.18, GM-CSF, and interleukin-2 was associated with a significantly improved outcome as compared with standard therapy in patients with high-risk neuroblastoma.
The study has been criticised for not having a rigorous comparator group; thus the design of the trial makes it difficult to predict how these therapies might interact. The addition of a control group whose members would receive isotretinoin in combination with GM-CSF and interleukin-2 would make it possible to come to a conclusion about the effectiveness of the anti-GD2 antibody in treating neuroblastoma. Also the determination of the effectiveness and safety of the combined immunotherapy has been criticised as it was limited by a rather short follow-up time (median, 2.1 years). Another article, from the same research group, has reported the five year survival rate of the therapy as 74% which isn’t entirely supported by the paper discussed above.
In short the efficacy of this therapy is not 100% confirmed so it would be negligent of NICE to allow patients to undergo the treatment before the results of a large scale European trial are in. So while it is difficult to accept that in order to ensure we are not doing unnecessary harm to our children we must deny them what may be a promising treatment until the evidence shows it works and is safe.
That is why NICE must be allowed to assess the evidence rather than the NHS bowing to political pressure because as the Downies experience shows going abroad seeking cancer treatment can be both expensive and potentially fatal.