Lucky 2 be on Herceptin

[geraldine]

Hi all,
first of all, I would like to say how much I've enjoyed reading through the threads. Everyone has a tale to tell and all are very brave.
I have been on Herceptin for 2 years now, will be on it indefinately (small price to pay for my health).
Here in the UK, Herceptin is not available to everyone. You have to have secondary agressive breast cancer before you qualify. Just this week, a lady in England fought the health board, and thankfully, won the right to the drug. She only won her case because of special needs, so there are still hundreds of women/men who will be denied this life saving drug.
I attend hospital every three weeks and look forward to my visits. It's like being part of an elite club, catching up on all the news, good and bad.
I thank God I was able to get Herceptin, for without it I know I would'nt be here.
Keep well and keep writing.

God Bless you all


Geraldine x

[StephN]

Good to hear from you - and SOME good news in the continuing fight to get Herceptin more widely available in the UK.
My heart goes out to all those who are in need who can't have access to this and other potentially life-saving drugs.
Assume you are NED now and maintained on Herceptin only??

[Lolly]

Hi Geraldine, thanks for the update on the fight for Herceptin in the UK. It was only in the last year that earlier stage Her2'ers have been able to get it, so hopefully the UK won't be far behind!
You have a countrywoman who posts here regularly, Christine H.

<3,
Lolly

I would be Christine MH-UK, but I am having trouble logging in today.

Hi Geraldine. I just wanted to add that what makes the situation really appalling is that people with certain types of private health insurance can get it, although not others (AXA PPP is not paying, for example, just to give them some bad publicity) and not many patients on the NHS. I was able to get it by paying for it out of pocket, so it's a good thing I'm not fat, but it took my oncologist four months to negotiate around to find a supplier I could afford. BUPA, which providing herceptin to patients with BUPA insurance, wanted £60,000 for a year, but Healthcare at Home was a more reasonable £26,000. Oh well, you can't take it with you and it's less than a Landrover Discovery.

There has been some real movement on getting herceptin generally available on the national health service, which provides health care for most people. In early June of the big cancer charities made public that the NHS's approval of cancer drugs was so slow that herceptin wouldn't be available until February 2008, so of course there was a big uproar and lots of political activism.

A big thank you to everyone who signed the Women Fighting for Herceptin petition. The government has now agreed to speed things up so that herceptin should be available soon after the European Union extends its licence to cover early breast cancer in mid-2006. It has also committed to giving life-saving drugs, such as cancer drugs, priority in considering them for licencing. It does get to me that many high-risk patients aren't getting herceptin.

I'm glad to hear that you are getting it, Geraldine. I hear that there are still some authorities that restrict herceptin use even in women with secondaries by not testing for the trait. Just last week the government announced that all local authorities will have to test newly diagnosed women for her2 status, so with any luck that practice will end.

[geraldine]

Hi StephN, thanx for the reply. Yes I am NED and on Herceptin only. Because they dont know the long term effects here, I will now be monitored every 3 months. I have just had my bone scan and am about to go for a liver and heart scan. Will see my onc in dec and the results of these tests, will decide if I can have the reconstruction that I wasnt allowed to get 4 years ago because of how the cancer had progressed at the time. I am now luckier than a lot of people and feel so sorry for the people who are deprived of the wonderful drug through politics and money. Keep well and God Bless x