Mother of Boy with Neuroblastoma Speaks Out After Drug The Helped Her Son Rejected for the NHS

According to a story from the Yorkshire Evening Post, five-year-old Toby Nye, from Leeds, has been seeing significant benefit from an antibody therapy treatment for his neuroblastoma. The therapy is highly expensive, at around £200,000, and he was only able to afford it thanks to an incredible fundraiser supported by the Leeds United soccer team and readers of the post. However, a recent review rejected approving the drug for coverage on the UK’s National Health Service (NHS).
Neuroblastoma is a type of cancer that originates in nerve tissue and is most commonly found in children. It frequently occurs in the adrenal glands, but is can also begin in the spine, neck, chest, and abdomen. Symptoms are very nonspecific at first, such as fatigue and joint pain, but eventually vary depending on the location of the tumor. An abdominal tumor can cause the belly to swell and constipation. Chest tumors cause breathing issues. A spinal tumor may affect the ability of the child to walk or stand. Neuroblastoma has often metastasized (spread) by the time it is discovered. The cause is unknown, though it may be caused by genetic mutation in a small number of cases. Patients with advanced disease have poor survival rates. To learn more about neuroblastoma, click here.

Toby’s mother Stacey says that failing to get dinutuximab beta approved for the NHS is going to have dire consequences for other neuroblastoma patients. Without being able to use this drug, the risk of relapse is going to be much higher. The drug has been very helpful for Toby, who was able to rid himself of cancer in his bone marrow for the very first time since he was diagnosed a little over a year ago.

Many rare disease treatments often face rejection by the NHS because of their great expense. In addition, data about the long term effects of dinutuximab beta is lacking. However, these hesitations often seem of little importance for parents who are desperately trying to get their children healthy again. Now, patients and families that have exhausted other treatment routes will be forced to attempt to desperately fundraise in order to get access to the drug, and not all of them will have the support of soccer teams and newspapers. Hopefully, this treatment will become available soon; the lives of many neuroblastoma patients may depend on it.

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