The family of a Bovingdon woman diagnosed with a severe brain disease is trying to raise money to help her get the treatment she needs.
Carol Leonard was diagnosed with follicular lymphoma in 2011 and underwent successful chemotherapy/immunotherapy in 2022.
However, in March of this year, she was then diagnosed with a rare brain disease called progressive multifocal leukoencephalopathy (PML), caused by her chemotherapy. This has sadly led to a decline in her cognitive abilities and left her unable to speak.
A month later, Carol suffered a seizure which led to right-side paralysis. Her doctors told her family that her only chance of recovery was a drug called pembrolizumab, already used by the NHS to treat various other conditions.
However, they were left shocked when they were told by the NHS that they would not pay for the drug to be used in Carol’s treatment as it is not a recognised treatment for PML.
Carol’s daughter Stacey told Kings News: “We have asked seven times and been told that it wasn’t in the taxpayers’ interests to fund the drug for mum.
“My mum has worked her whole life, paid her taxes, and fully expected the NHS to step in if she became ill.
“We have privately funded three doses at a cost of £30,000. She also requires intensive physical therapy and speech therapy. The NHS will provide her with just 40 days.”
A spokesperson for the National Institute for Health and Care Excellence (NICE), which is responsible for drugs within the NHS, said: “NICE has not published any guidance on pembrolizumab to treat progressive multifocal leukoencephalopathy.
“For background, NICE can only begin to appraise a technology when it has been formally referred to us by the Department of Health and Social Care and NHS England. With each appraisal, we review how well a new treatment works and how much it costs compared to what is already available on the NHS, on a case-by-case basis. Where the evidence is clear and a treatment has been fairly priced, we can recommend it for routine use.
£Additionally, NICE can only look at treatments that are licensed by the UK regulators (usually the Medicines and Healthcare products Regulatory Agency or European Medicines Agency). If pembrolizumab has not been licensed to treat PML, we cannot recommend it for the condition.”
To help Carol’s family pay for her treatment you can donate here.
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