continuing on avastin

[LesleyGreengran]

I saw my oncologists last week and they are letting me continue on avastin after the 18 doses they initially said I could have. He looked up the documentation. (He was a locum consultant I think, brought in because the clinic was so busy). He said my last dose would be on the 5th November which would have been the 18th dose, a year after I starte dit in conjunction with 6 cycyles of carbo/gem. I told him I thought I should be continuing till disease progression or if the side effects became too bad to continue, which was what I had read online from the CDF. He was looking at the same document but was reading what it said for first line, but my treatment was for recurrence. He then went to talk to the other consultant, ie the one I usually see. I had seen her at two previous appointments when we had had the same discussion. He came back and said I could continue with avastin and that they'd looked up the guidleines, that they were unclear and he hoped they would not get fined. I hope this helps anyone who is wanting to continue and is having difficulty persuading their consultant that they can. I told them that I had read online of people continuing, here and in the USA.

[Whippit]

Wow Lesley this is great news - and power to your elbow! I hope it continues to have a good effect. I met a lady last year who'd had it for 3 years and she looked a picture of health. I asked my oncologist at the Royal Marsden. I'm about to have the 16th of 18 doses and was told they could apply for further funding from the NCDF but it was not likely to be granted.

It's good we're all sharing news like this to help us fight our way through the maze. Would you mind my asking what hospital you attend?

xx Annie

[LesleyGreengran in reply to Whippit]

I'm in Huddersfield so it's Calderdale and Huddersfield Trust - the hospital is Calderdale Royal Hospital but they're at Huddersfield RI as well.

[Whippit in reply to LesleyGreengran]

Looks like some of us on Avastin might want to travel to Huddersfield for treatment!!! lol

[baxbird]

Wow that is good news.

I had a conversation with my oncologist last week and she is ore of the opinion that I will be lucky to get the 18 cycles for first line treatment. She was also of the opinion that NICE are unlikely to agree for Avastin to released to the NHS because of cost v benefits issue. She was talking about oraprihub ( cant spell it and can't remember exactly the name at the moment) being more widely available in the future, so another one for us to watch out for.

Dawn

[LesleyGreengran]

I think pressure on Roche to reduce the costs is my next step. I would like to know how much profit they are making. It's important that they can pay researchers but it's not much use if we then can't get the medicine they've developed. Of course in the US insurance companies pay and that puts the costs up for us all. It's a pain having to deal with health economics as well as the disease and treatment and finding out about what treatment is best for us. I've been quoted two prices for car repairs a few years back depending on whether an individual was paying or insurance was and I think this is working the same way.

[vipervictoria in reply to LesleyGreengran]

Avastin was actually developed by Genentech, a SF based biotech company, that merged/was taken over by Roche a few years ago. Roche have already reduced costs to the NHS, so I fear further reductions won't come until Avastin comes out of patent.

It seems that some women respond very well to Avastin and can stay on it for years. Other women don't respond so well. Recently some research in this country identified two groups of women for whom Avastin would work well and another group for whom it would have a detrimental effect. If Roche could use this research and perhaps do some more, NICE's arithmetical calculations would change and the argument to OK the drug for treatment of ovarian cancer would become more compelling.

As for insurance companies, they actually bring costs down - they negotiate vast discounts from both hospitals and drug companies. Typically the amount paid is around 25% of the invoice in the US. Here a similar situation prevails - bills are almost always discounted by 50%, or a special rate is negotiated between the provider and the insurance company. The loser is the poor soul who pays for her/his own treatment.

If it wasn't for the vast American market and the consumer pressure that exists for new drugs then there would be fewer drug companies and far fewer drugs. Alas altruism loses out to capitalism. There has to be a better way, but what is it? Vx