A young woman battling cancer today described her heartbreak after health chiefs refused to fund a trial treatment which could be her only hope.
Heather Parkinson, 27, of Queensway, Leyland, says NHS Central Lancashire kept her hanging on for 13 weeks as they considered whether to pay £3,000 for a cancer trial at London’s Royal Free Hospital.
Miss Parkinson and boyfriend Chris Bradley are devastated after primary care trust bosses refused to fund the treatment for her Hodgkin’s lymphoma because the drug basiliximab is “not licensed”.
Miss Parkinson claims she is the victim of a postcode lottery as other PCTs across the country have funded the trial. Royal Free is currently treating one patient a week with the revolutionary treatment.
She said today: “I feel absolutely distraught and cannot believe the PCT has taken so long to come back to me only to tell me what I already know. We know the drug is not licensed. That is the point of trial drugs.
“Consultants at Manchester and London believe this trial treatment is the best way forward for me and I fit all the criteria. I was advised the PCT decision would take between four and six weeks, but instead it has taken them 13 weeks to tell me ‘no’.
“I kept ringing the PCT asking if they had made a decision, but could never get hold of anyone. At one point, I spoke to someone who told me the woman who was meant to deal with it had been off sick for a month so my letter had not even been looked at. I had to get Central Advocacy involved before finally getting an answer.
“I am in a lot of pain and am having trouble sleeping and my tumours are growing all the time.
“I was pinning all my hopes on this trial and am devastated the PCT won’t pay for it.”
Heather was first diagnosed with Hodgkin’s lymphoma, a cancer affecting the lymphatic system, at the age of 19 after suffering a cough which wouldn’t go.
Scans and tests revealed Heather had stage four Hodgkin’s lymphoma with multiple tumours above and below her diaphragm and in her internal organs. She underwent chemotherapy and radiotherapy and was in remission for five years.
But while on holiday last year, Heather was putting sun cream on when she discovered a lump in her neck. She went to Manchester’s Christie Hospital where a biopsy confirmed her cancer had returned.
Miss Parkinson, who owns a pet shop in Kirkham, said: “I have stage two cancer this time and have tumours in my neck and under my arm. I have had four sessions of chemotherapy, but it has not worked and a scan showed my tumours had grown despite chemotherapy.”
Doctors say her best chance is a cell stem transplant and her sister Shelley Watson has agreed to be a donor. But before Heather can have the transplant, she needs to be in remission or at least have her tumours shrunk.
Royal Free Hospital is running a trial of targeted radiotherapy called CD25 which only started being tested 18 months ago.
Because it is between phase one and phase two of the trial, it is classed as a “compassionate treatment” and participants need their PCT to provide £3,000 of funding. If Heather self-funded the treatment privately, it would cost £16,000.
Miss Parkinson explained: “It is a one-off treatment which would involve me being given this radioactive drug and being put in isolation in a lead-lined room for a week. Royal Free only has one of these rooms which is why they can only treat one patient a week.
“The treatment works as the radiation attacks the cancer without harming healthy cells. Because I have had radiotherapy already, I cannot have it again as it would damage my heart and lungs.
“I cannot understand why other PCTs have agreed to patients having this trial - some have even agreed within a week - but my PCT has refused it.”
Heather’s boyfriend Mr Bradley, also 27, said: “Because Heather was left waiting for so long for the PCT’s decision, her consultants have put her on fortnightly chemotherapy to stop the cancerous tumours growing even more.
“It seems ridiculous that the PCT won’t fork out a one-off £3,000 for this trial when it is probably costing the NHS a lot more for the extra chemotherapy.”
Dr Steve Ward, NHS Central Lancashire’s medical director, said: “We apologise unreservedly to Miss Parkinson for the time it took for a decision to be made and for the distress this has caused.
“The review took longer than usual as we had to seek further details from the team carrying out the research, but we accept that the delay was too long. We have already changed our procedures to ensure this does not happen again.
“All patients have a right to drugs that have been recommended by National Institute for Health and Clinical Excellence (NICE).
“Decisions about funding other treatments are made following proper consideration of the evidence by our Commissioning Review Panel, which includes a number of clinicians.
“Every case is different and we cannot recommend funding a treatment unless we are certain it is clinically effective, evidence-based and safe.
“Basiliximab is not licensed for treating Hodgkin’s lymphoma and is still in early trial stages. Like the majority of primary care trusts, NHS Central Lancashire does not fund clinical trials.
“In assessing Miss Parkinson’s case, we asked for further information from the team carrying out the research, but they have been unable to provide clinical evidence that the drug would help her.
“We understand Miss Parkinson must be incredibly upset and our thoughts are with her and her family at this difficult time.“