A man with terminal cancer said his life is being “played with” after being told he would no longer be prescribed a drug which helped reduced the effects of his illness.
Ian Haslam, aged 58, of Underwood, was diagnosed with multiple myeloma, a bone marrow cancer, in December 2015.
The former self-employed builder underwent chemotherapy and had a stem cell transplant.
However six months later his cancer had returned, this time spreading to his brain.
He was put on a cancer drug called Revlimid which he said kept his cancer at bay.
He said: “I started on Revlimid and it was brilliant, it actually reduced my cancer.
“However, my platelets dropped which meant I had to come off the drug until they got better.
“When my platelet count returned to normal, I was put back on the drug, but two weeks later I was told they couldn’t give it to me anymore and I was distraught.
“I know I have terminal cancer, but I know for a fact this drug was keeping it at bay and I have three children and a wife – it is affecting all of them.”
Mr Haslam said the drug reduced the pain and reversed the symptoms of his cancer, so he was left feeling helpless and worried.
His cancer has affected his hearing, sight, arms, legs, head and chest and the debilitating pain means he rarely leaves the house.
He said: “When I was on the drug I could walk around and go to the shops, but now I just feel pain.
“I know it is an expensive drug – it costs about £4,000 every three weeks –but this is life or death and I feel like they are playing with my life.
“I know it isn’t the fault of any of the doctors and nurses at the hospital. They have all been amazing and I am so grateful for the care they have given to me.”
Frances Wadelin, consultant haematologist at NUH said: “Ian has multiple myeloma and has previously received two lines of chemotherapy. His third line of treatment was with the drug lenalidomide (revlimid).
"He was due to receive his ninth cycle of this particular drug, but developed immune thrombocytopenic purpura (ITP), which causes low platelets in his blood. ITP is not directly related to his myeloma and it is uncommon for the two conditions to occur together.
"In order to treat ITP, Ian was taken off his lenalidomide until his platelet level returned to an acceptable level, which in this case took six months. NHS policy requires a treatment break application to be submitted for patients who have had a pause in their treatment.
"This application was declined due to Ian’s myeloma progressing during this time.
"A second application was sent to the drug company to receive treatment on compassionate access but was also declined. We have since submitted an IFR (Individualised Funding Request) which has been reviewed and is supported by the drug and therapeutics committee at NUH and is currently being considered by NHS England.”
NHS England said there are not currently any issues regarding access to the drug and each case is considered individually.
Councillor David Martin, councillor for Underwood and a member of the health scrutiny committee for Nottinghamshire County Council, said: "Ian and his family have gone through so much in the last three years and then to be told this, it is just a slap in the face.
"My issue with this is that it is a matter of red tape. His life is at the cost of a regulation."
A fundraising page heas been set up to help fund Ian's drugs.
Story courtesy of Notts Post