South Leicestershire MP, Alberto Costa, has written a letter to the Prime Minister urging him to personally intervene to assist constituents in accessing whole plant medicinal cannabis which has shown to be life saving for children with intractable epilepsy. Without access to this, the children can experience up to 300 seizures in a day.
Although the law was changed to allow access to medical cannabis in November 2018 for specialist cases, only three prescriptions have been issued since. As a result, families are having to pay for private prescriptions which cost up to £2,000 a month. There is a serious risk of the families running out of funds and therefore the medicine, within weeks.
Alberto is calling for an emergency compassionate access fund to be set up for families like his constituents who are struggling to raise the money every month for this life saving medicine. Efforts for fundraising opportunities have also been stifled due to the current situation with Covid-19. Mr Costa has consistently raised this issue in the House of Commons and has previously met with his constituents in Parliament who are part of the ‘End our Pain’ campaign.
Alberto said, “I was shocked when informed that my constituents are having to pay up to £2,000 a month in order to access this life saving medicine for their children. I have written to the Prime Minister urging him to set up an emergency compassionate access fund help to families access the vital medicine they need”.
There are two types of medicinal cannabis, Epidyolex, which is CBD only and is only licenced for two rare forms of epilepsy. There is also the type that is life transforming and is known as whole plant extract which contains both of the two main components - CBD and THC. Mr Costa is campaigning for improved access to whole plant extract which is needed for his constituents. There had also been recent supply issues with the drug Bedrocan due to Brexit, in which Alberto’s constituents also rely, but the Prime Minister intervened and Bedrocan is now accessible for existing patients until July 2021.
Alberto added, “It is very disappointing to hear that although medical cannabis became legal in 2018 in specialist cases, only three prescriptions have been issued to help these very sick children and their families. Better access to whole plant extract is desperately needed as this medicine is life saving and is vital to these children for an improved quality of life and I will continue to raise this issue on behalf of my constituents in Parliament.”
Picture above shows Alberto Costa MP with his constituents (L-R) Samantha Fairlie and Katie & Jonas Lukosevicius with pictures of their daughters Maya and Evelina.
