4/10/2023 0 Comments Austin house of tormentThat is why we are enabling continued patient access to them by accepting applications to import. MHRA chief healthcare, quality and access officer, Dr Laura Squire, said: “We recognise the importance of these cannabis oil products for children with severe forms of epilepsy. It said the importer “was informed of this in June 2021, and they were advised to contact prescribers and patients so that therapeutic alternatives could be found in a timely manner”.īut the MHRA said it has agreed measures to enable the importer to continue to supply UK patients at least to the end of this year, and that it is continuing to work with them on a permanent resolution. The letter says manufacturing standards in Celixir20’s country of origin are not equivalent to Good Manufacturing Practices standards for medicines in the UK. “So as much as we’re relieved slightly today, come Christmas now that will be it – leading up to that is going to be a huge torment.”Ī letter sent by the MHRA to Mr Hughes in June, and seen by the PA news agency, said: “In the absence of assurances that Celixir 20 is manufactured at a facility operating to the same rigorous standards as other medicinal products, the MHRA is not able to process import notifications of this medicine on the grounds of patient safety.” “But come Christmas now, he’s going to be in the same predicament, he’s going to be in a life-threating situation, because you know they are just prolonging the inevitable – that they will just stop the medication coming through again. “The decision has bided us some time, so we have got summer to enjoy with Bailey as a family – and with him being well. Mr Hughes said his son used to suffer from more than 100 seizures a day, but since being prescribed Celixir20 in May 2020 has seen an 85% reduction in seizures and more recently been seizure free for over 150 days.īailey Williams, 20, who suffers from severe epilepsy (Family handout) (PA Wire)įollowing confirmation imports would last for at least another six months, she said: “This exact moment in time is great. Matt Hughes, a co-founder of Medcan Support and the father of five-year-old Charlie – who has a form of severe epilepsy, said he was “completely devastated” to be notified imports were ending. The MHRA has since offered assurances, which was greeted by families with both immediate relief and concern for the future. MedCan Support said families had not received confirmation of the decision until a couple of weeks ago, prompting Labour MP Tonia Antoniazzi to say in the House of Commons that the ending of compassionate imports for Celixir20 was “cruel”. It follows families being notified the MHRA had taken the decision last year that it would no longer process import notifications on the grounds of patient safety. MedCan Support, which describes itself as a non-profit community interest company, said around 30 children will be impacted if the MHRA does not continue to allow imports.
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