A seriously ill Doncaster mum is desperately trying to obtain a drug she believes help her condition.
Rachelle Maltby, aged 47, from Scawsby, was diagnosed with a form of Motor Neurone Disease two years ago, and she feels like her time is running out.
An experimental drug from America cannot be accessed through the NHS because it has not had the required number of clinical trials. But Rachelle has contacted her local MP, Ed Milliband, the House of Lords, and the head of NHS England, urging them to introduce the drug in the UK.
She said: “I have been trying to pursue a drug made by an American Pharmaceutical company. But, I am embroiled in red tape and less than sympathetic medical personnel.”
GM604 is not available in the UK because the company has not conducted suitable clinical trials. At the present, Rachelle has no chance of accessing the drug, even though she claims it has shown promising results in the US and in some cases ‘reversed the symptoms’.Rachelle has refused to take the drug the NHS offered her, and says she thinks it would prolong her life for three months but she would be unable to walk, talk or breath unaided.
She said: “This disease is distressing enough, without prolonging the agony for others, as well as myself. That said, I do not want to not be treated. I am angry about the level of treatment, or lack of it, for anyone diagnosed with this wretched disease.
“I swing between desperately wanting to be here, wanting to see my children grow up, as well as wanting to spend time with my family and friends. Yet I also feel a great sense of responsibility to let them all go and unburden them from caring for me.”
Before her diagnosis Rachelle enjoyed fell walking in the Lake District and trekking up the Himalayas for charity. Her movement is now almost fully restricted and her speech has began to deteriorate.
She said: “If there is one legacy though, that I would like to be part of, is improved access to drugs or potential treatments for others who have been diagnosed with this cruel terminal illness.”
She added she thought it was ironic that if she chose to go to Switzerland for assisting dying, doctors could not stop her, but the right to try this new drug was not available to her.
A spokesman for the Royal Hallamshire Hospital, where Rachelle has been treated, said they were sympathetic to Rachelle’s situation but the drug was not licensed for use in the UK and the manfacturer had not offered to run a clinical trial here so it could not prescribe thedrug at the current time.”
NHS England said: “GM604 does not currently have market authorisation for use in the UK. We can only make funding decisions once a drug has market authorisation based on robust clinical data. The drug is not currently available outside of controlled clinical trials.”