DYING MUM’S CANCER DRUG PLEA
A MOTHER diagnosed with terminal cancer has been refused a drug which could prolong her life as it would be a “financial burden” on the local health board.
Kelly Maybury, 36, from Maesteg, was diagnosed with cervical cancer in 2013.
After receiving a course of chemotherapy and radiotherapy over several months, she received the all-clear. But the hairdresser and beautician’s world came crashing down again when she was told in 2016 the cancer had returned and had spread to her lung and lymph gland.
And it has now spread to her kidney, with doctors telling her the disease is terminal.
While undergoing another round of chemotherapy, Kelly began to research her condition to see if there was anything else she could do prolong her life. She read about a drug called bevacizumab, also known as Avastin, which is used to treat advanced forms of cancer.
She said: “This drug starves any tumours of oxygen and stops them from spreading and can kill them. I have been told by my consultant this drug will work for me and can prolong my life. They recommended it for me and I really need to have it.”
Kelly, with the help of her consultant and Velindre Cancer Care, made an application to the Abertawe Bro Morgannwg University (ABMU) Health Board to fund the drug.
After waiting more than a month to hear back from the health board, Kelly was told her application for the drug had been refused.
Among the grounds for refusal was the treatment, at a cost of £3,800 per cycle, would “place a financial burden” on the health board.
The health board said “exceptionality” in Kelly’s application had “not been demonstrated”.
Kelly was left heartbroken about the decision, as was her husband Mark, 40, daughter Carys, 16, and son Daniel, 12.
She said: “They say I am fit and healthy, I have got everything behind me. I am good candidate for it but because I am fit and healthy they say I can’t have it.
“I have got this and it’s not going away and I don’t know how long I have got. I haven’t got that long without it, I need it.
“How can they say I am not an exception? I am fit and healthy. I haven’t abused myself with drugs or alcohol, I eat healthily and do all the right things. I am not a smoker. I have got two young children who depend on me. My little boy is diabetic and my daughter is having a tough time at the moment. Things are tough enough on them without this.
“To be told you’re not an exception, I don’t understand how they can say that. Who gives them the right to say I am not exceptional? I am desperate, I am really desperate.”
Kelly and her consultant have started the process of appealing the decision and have written to her MP and the Assembly.Her friends have started up a fundraising page to help pay for her treatment.
“This drug should be available for everyone”, said Kelly.
“It’s only through researching myself that I found out about it. I questioned it and brought it up and then they said ‘It’s available to you and will help you.’ I thought there was hope out there and then they tell me it’s not available to me or anyone else unless you’re an exception.
“If this is available, why can’t it be given to anyone? If this can save someone’s life, give it to us. It should be available.
“I do need this drug, it will prolong my life and it is something that is going to work for me. If it changes five years into 20 years then it should be available.”
A spokeswoman from ABMU Health Board said: “We cannot comment on individual requests. We would like to briefly explain the process we have in place when doctors ask us to consider if a patient can have a drug which is not approved by Nice or the All Wales Medicine Strategy Group.
“Like all health boards and trusts in Wales, ABMU follows the all-Wales policy for making decisions on Individual Patient Funding Requests (IPFR).
“The health board has an IPFR panel which meets fortnightly to consider each request on its merits, using clinical evidence available at that time, and the criteria set out within the all-Wales policy.
“This panel is chaired by a senior clinician and others, including consultants, GP, pharmacist and a lay representative.
“A patient can request a review of the IPFR panel decision. The review process comprises a separate panel, which tests whether the IPFR panel followed the all-Wales policy. Although the review panel cannot overturn the original decision, it can ask for that decision to be reconsidered by the IPFR panel.
“If at any point further evidence becomes available to support the patient’s IPFR application, the patient’s clinician can submit a new funding request to the health board’s IPFR panel.”
Visit www.justgiving.com/crowdfunding/Kelly-Maybury-BrianPreece to make donation to the fundraising campaign for Kelly.