Presentation to the All Party Political Group for Ovarian Cancer: Wednesday 5 June 2013
The situation in Wales
There is no Cancer Drug Fund in Wales. The Welsh Government has devolved decision-making to the seven Local Health Boards. Our oncologists have to make an Individual Patient Funding Request, an IPFR, to the board responsible for each patient’s care. A picture is emerging of an unethical situation where some boards are very likely to approve the request and others have not approved a single application for Bevacizumab to treat Ovarian Cancer.
I’ve been unable to produce statistical evidence for the meeting today despite having made Freedom of Information Requests to every health board in Wales. I can therefore only bring circumstantial evidence to the table. I bring you my story. I believe it’s factually accurate, and it’s an honest reflection of the situation in Wales regarding access to Bevacizumab.
I run the SE Wales Support Group for Women with Ovarian Cancer
Four members of our group were recently told they met all the eligibility criteria set out by NCDF and you would therefore assume in a fair society that IPFRs would be made for each one of them.
Their health care is provided by 3 adjacent health boards in S Wales.
Two of the women are treated by Cardiff and the Vale. Women receiving treatment from this health board at the Velindre Hospital Cardiff are given absolutely no hope that an IPFR would be successful. I’ve been told this board, the largest in Wales, has never approved a request for Bevacizumab to treat Ovarian Cancer.
On hearing this a member of our group became concerned. Her oncologist had submitted an IPFR to the Abertawe Bro Morgannwg Health Board and he had given her no indication that it might not be successful. She contacted her oncologist and she received the good news that the request had been granted as expected. She has now started her course of Avastin. We’re all very happy for her and expect her to benefit from the additional remission and quality of life associated with the drug.
A fourth member of our group lives in Monmouth. She is served by the Aneurian Bevan Health Board but receives her treatment at the Velindre Hospital in Cardiff. Some IPFRs have been approved by her health board so she won’t have to confront the tragic destiny of patients at the same hospital whose treatment is provided by Cardiff and the Vale. As you can see, a challenging and unacceptable ethical dilemma repeats itself daily at the Velindre Hospital.
Target Ovarian Cancer have asked me to tell you how I feel.
How do I feel as a UK Tax Payer and having paid NI for over 42 years? I am bewildered I’ve begun to feel over the 2 years of my cancer journey that I’m not getting a fair deal by comparison to other parts of Wales or the UK.
How do I feel as a resident of Wales? I’m disappointed. Having a devolved administration was meant to make things fairer. The system in Wales is dividing its patients into sheep and goats and the judgement upon us appears to be based on nothing more substantial than a postcode lottery.
How do I feel as a woman with advanced and incurable ovarian cancer living in Cardiff?
I feel cheated. In effect I have no access to Bevacizumab. I am about to have a second line of chemotherapy and I should be eligible to receive it as I meet all the published criteria. However I find there are additional unpublished criteria for access to a drug that would extend and improve the quality of my life. I live in Cardiff, Wales’ Capital City and I’m treated at Wales’ leading Cancer Centre. These have become the barriers to my obtaining Bevacizumab.
I’m aware that you’re not able to help directly and I now need to make my case in Wales. I’ll leave you with this thought.
In 2008 Wales launched a drive to improve its poor record of cancer survival. The Welsh Government has set out to achieve five-year survival rates comparable with the best in Europe by the year 2015 and yet its largest health board refuses all requests for a drug that prolongs and improves the quality of life for women with Ovarian Cancer.
I’d like to conclude by thanking Target Ovarian Cancer who do so much to support women living in all regions of the UK and who invited me to speak today, and I’d like to thank all of you who have listened to my story.