Today, I went with my lovely brave wife to see the oncology doctor to confirm the chemotherapy regime. The decision SWMBO has made is Carboplatin alone, adding in the other one if it proves necessary later in the treatment.
I asked about Avastin, could this be considered alongside the Carboplatin? The response was, 'not in this country, it is not available. Don't believe all that drug company hype. It is not used in this country as it is not funded'. I pointed out that I was aware that it was available, that patients were getting results from it and that funding was available albeit not easily. Reasons not were repeated and the subject changed.
How do you counter such an out-and-out dismissal? I am not behind the door at coming forward, but I was dumbstruck by her wholly negative response.
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On 5th March 2012, Louise Bayne (Ovacome) posted this (in case you didn't find it in your travels).
"LouiseBayne OVACOME 5 Mar 2012Report
Hi Everyone,
Naturally this is a very important topic which has caused significant debate, however there have been a lot of misunderstandings and some strong claims on this and other threads, and we feel it is important to keep everyone up to date with the facts as they stand in the UK.
Firstly its important to understand the UK drug access process so that everyone can sensibly discuss with their oncologists the issue of possibly receiving Avastin.
There are two main hurdles which all drugs have to pass in almost every developed country: Drug licence, and national funding. They are separate processes with differing objectives.
In the UK most drugs are licensed on a European wide basis by the EMEA -
If a drug receives a licence, this means that the drug has been demonstrated to be safe and effective in specific circumstances. There are limitations on each drug licenced by the EMEA depending on what trials data has been presented by the drug manufacturer.
The second part of the process is the consideration by individual national agencies as to how specifically it will be provided/renumerated by the national health services/insurance agencies. (Most European countries have a part national/part private set up) For the UK this is the role of N.I.C.E. (National Institute of Clinical Excellence). NICE considers the cost/benefit for the drug's use WITHIN THE LICENCE using the same data as presented at licencing and any newer data which has been published since. It is not able to consider using the drug outside of the conditions of the given licence.
Avastin received its EMEA licence in December 2011. It has not yet been considered by NICE, however we anticipate that it will be at some point during the year. When it does so it will only consider the use of Avastin in the first line setting as this is the only circumstance that the manufacturer has received a licence for.
There is not yet published data of significant enough power for the drug manufacturer to apply for a licence for Avastin to be given for ovarian cancer which has relapsed after first line treatment. There are studies which will be published later this year which we hope will demonstrate that Avastin provides progression free survival for women whose cancer has relapsed, but as yet there is insufficient quality of data to be able to say. (individual clinicians may have strong opinions or small case series, but there are high standards for registration trials for good reasons). If the manufacturer believes that the data for relapsed disease is robust enough, one assumes that they will apply for a licence for Avstin to be used in relapsed disease.
SO - where do we stand at the moment?
In the UK, cancer drugs which are not available via NICE can be funded by the Cancer Drugs Fund (CDF) The CDF is managed on a geographical basis by the Strategic Health Authorities (SHA's) Of the 4 SHAs which have so far published their final determinations on Avastin in ovarian cancer, all have approved access for Avastin in the first line setting (Although there are some variations on some specific issues such as the accompanying chemotherapy regime). If a clinician wants to prescribe Avastin and the SHA has not yet made a determination, or if they wish to use Avastin outside of the licence (For example in a woman whose cancer has returned after first line treatment) then they are able to apply to the manufacturer for exceptional use. This is something which each clinician can advise interested women on, as the specifics in each SHA differ slightly.
Avastin shows great promise, but it is early days. What we know from the studies so far is that if a woman has it during her first line chemotherapy, and continues on a 12 month maintenance programme, her remission was on average 5 months longer than a woman who did not, however there are some more detailed considerations such as pre-exisitng health conditions, stage of the disease etc etc. Avastin is not right for everyone.
It is impossible for any one individual to know what the course of her disease would have been if her treatment programme had been different.
It is early days, and we are keen to ensure that every woman who, with the support of her oncologist, wishes to add Avastin to her treatment plan is able to do so. Ovacome continues to work closely with all the relevant stakeholders to ensure that Avastin is appropriately available to women in the UK.
If you have further questions/concerns, please do contact the helpline nurses on 0207 299 6650, and they will do their best to help.
"
I hope that gives you the explanation you need. It's so hard to know what's best.
If it helps - I refused taxol, Avastin on trial and something else I can't now remember and agreed to carboplatin on it's own for my 3c, grade 3 ov.ca. after surgery in Jan 2009. I achieved remission and have been disease free since. Let's hope your wife is the same.
I wanted the most result for the least intervention, and was told that carboplatin does 90% of the work for 10% of the harm (whereas other drugs -(taxol certainly) do 10% for 90% respectively).
You could ring ovacome for advice, they probably have the latest news as to the exact situation for your wife's case and health authority. The problem is the drug has been licensed for use with ovarian cancer, but there are no NICE clear guidelines in place yet as to how it is to be used. Thus you can get funding by applying to the cancer drugs fund, but are likely to only get granted funded under certain circumstances (first line use with carboplatin - and taxol? not sure about the taxol) and even then it will probably be dependant on the health authority and the funding.
available. It is not an urban myth (you made me chuckle though), but I think you have caught it just in it's earliest stages of use in ovarian cancer, and the whole thing is a bit of a lottery. I think if I were you I would seek a second opinion from a local expert (again ovacome can help) and see if you can switch to them if they think it would be beneficial. For some ladies it can prolong remission although they are not sure yet whether it does prolong overall survival.
Not sure about this, haven't had any experience myself, but there has been quite a bit of discussion on here about Avastin. If you type it into the search box at the top of the page, you might find a bit more evidence to impress the oncologist with! Good luck. We all deserve the best possible treatment we can get. All the best to you and your wife,
I've heard that it is available now in almost all areas - so why not ask for a second opinion. You can also search for cancer drugs fund in your area - that's if you are in England or Wales, but you need a doctor to apply...
I have researched this further now and will be providing SWMBO's clinician with information as to how she can apply for funding for this drug. According to my research, it should be approved automatically if she agrees to apply.
Need to find out why she is taking the attitude she is. Further research into this area is needed !!! This is bringing out the tenacity in me!
Since writing the initial piece above, we have written to all UK English Gynae Oncologists and Clinical nurse specialists with a tool kit which has geographically specific information. If you would like us to e mail you the kit for your area, please send me an email to ovacome@ovacome.org.uk. I am out of the office today, but will check this evening and ping it over to you. Please note that they were written 2 months ago, so may now be out of date, but there is still some interesting data and helpful resources (such as sample letters and contact details for the people to write to)
In the general scheme of things it is crucial to keep a healthy dialogue with your oncologist. There may be valid reasons for your oncologists view (maybe a pre existing medical issue your wife has or something along those lines) Do keep asking, and in these situations your clinical nurse specialist is invaluable as they have more time for discussion and can be a great communication conduit.
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