Sad news and a double blow!

Ellie F · 03-05-2009, 12:24 PM

Hi just wanted to share two pieces of devatating news from England. Ann Marie Rogers a very brave lady has sadly died.She took the NHS to court in 2006 following their refusal to provide her with herceptin for early stage BC and WON! Now women in Britain can get herceptin thanks to her efforts.The second piece of bad news is that the Government body who determines which drugs will be made available in England has today decided that Tykerb will NOT be funded as it has not proved cost effective! As this was probably going to be my next option I'm feeling pretty down and pretty angry .Sorry to be going on but this just seems to be another reason why our survival here from bc lags behind the States. Not the best day for news here across the pond. Ellie

vickie h · 03-05-2009, 01:37 PM

Hi Ellie,
I just mailed off a bottle of Tykerb to a woman back east who couldn't afford it. I wish I had saved that and mailed it to you, but maybe there are others on this site who have some and we can collect it and mail it to you. I don't know what the legal ramifications would be (mailing internationally) but it is worth a try. I'll do some research and see what I can find out. Also, if you call the drug company directly, they have a Tykerb Cares program that will fund your drug (provided your Onc will write you a script for it) if you can't afford it. I'll get back to you after the week-end and see what I can come up with for you. Hang in there, sweet sister, help is on the way. Love, Vickie

Midwest Alice · 03-05-2009, 03:07 PM

Hi Ellie, PM me again if you have more questions. I am going to go back and read your post to get your history. I have some information on IBC from my first visit to MD Anderson with Dr C.

Vickie is right, we will figure this out.

03-05-2009, 03:44 PM

Some other news form the UK is that the people responsible for deciding what drugs are available (NICE) have this week decreed that Herceptin will not be used for patients who have advanced breast cancer once it has spread beyond the central nervous system (brain and spinal cord) and any patients currently getting herceptin where it has spread beyond this will have it withdrawn. In the light of the Tykerb (also known as Tyverb over here) withdrawal it seems they dont want to do much for anyone in the UK with advanced breast cancer! It seems a ludicrous situation that they will give herceptin if its in the brain but it is known that tykerb is much more effective in these circustances as herceptin does not pass the blood brain barrier as effectively. Also for brain mets they will offer whole brain radiotherapy - you may or may not be aware that there are no cyberknife machines here in the UK.

Ellie F · 03-05-2009, 03:58 PM

Thanks to you both for your kindness. Couldn't stop the tears when I read your posts.Am going to contact the drug company to find out how this decision will effect obtaining tykerb here if recommended by onc and whether they have any plans to appeal the decision.Will update when I have more info.Really,really,really appreciate your support. Ellie

Midwest Alice · 03-05-2009, 04:06 PM

Check your PMs

Ellie F · 03-05-2009, 04:06 PM

Hi also to unregistered guest, hadn't got your post before replied last time. I totally agree with you and and have had my herceptin stopped following spread to my lymph nodes. With the withdrawal of Tykerb it seems they want us to have no options at all! Maybe these issues need legal challenges AGAIN!

hutchibk · 03-05-2009, 04:09 PM

Sadly, that's where we are headed here in the USA, I'm afraid. We are on path (being railroaded/fast-tracked) toward National Healthcare. The measuring technique that NICE uses is basically what "comparative effectiveness research" is, and our new administration has already appointed a Federal Coordinating Council for Comparative Effectiveness Research. I get the feeling my days are numbered as I won't be considered "cost effective." Sigh.

chrisy · 03-05-2009, 06:00 PM

Brenda you are definitely a high maintenance lady, but worth every bit of it!

I agree, the new direction scares the bejeezes out of me.

At the same time, I have to have faith that it will work out. That it is ultimately in hands much stronger than those in our government. I sure hope so, anyway!

Perhaps what this will do is accelerate the research into truly personalizing treatment so that monies are not wasted giving expensive drugs WHERE they are not effective. Or prompt the FDA (I've got uncomplimentary words for that acronym) to find more cost effective ways of evaluating/approving drugs so that the costs to bring treatment to market are not so high that the drugs are unaffordable.

In the meantime, I guess we all have to add "political advocacy" to our list of survival skills, as if we didn't have enough to do already.

hutchibk · 03-05-2009, 11:16 PM

Hey sister woman - me high maintenance? Que es?

I wish I could be as nonchalant about it as you, but I don't have an ounce of confidence that we will end up on the winning end of what is coming down the pike... I fear that that's not a light at the end of the tunnel, it's an oncoming train.

Ellie F · 03-06-2009, 04:44 AM

My worry now that herceptin (except for brain mets) and tykerb will not be available in Britain for advanced bc is that this will reduce the incentive for drug companies to progress research and thereby reduce the chances of cure.What feels even more unacceptable is the refusal of the Government to take up the offer of free provision of these drugs and payment for them only if they are effective.Women who are currently receiving herceptin for ad bc are to have this withdrawn and will only receive a chemotherapy drug on it's own.Incidentally there is only one cyberknife in Britain and this is at a private clinic! Hang on in there in the States,we need to beat this.

Brenda_D · 03-06-2009, 06:51 AM

I saw on the news just yesterday that the US admin has requested 6 billion to go towards cancer research with an emphasis on biologics. I'm hoping for the "tailored treatment" approach.

hutchibk · 03-06-2009, 12:35 PM

It's so curious to me that since Herceptin DOES NOT cross the BBB, why is NICE approving it only for CNS mets, but no extracranial mets? I suspect that they know that it won't treat brain mets and that patients will effectively die on Herceptin treatment for brain mets, sooner rather than later, and that will save the system money. If they were to treat brain mets with something that might actually work (i.e. Tykerb and Cyberknife as options), and the organ or bone mets with Herceptin, then the patient might live an untold number of reasonably healthy years in maintenance treatment on those drugs, but it would become more expensive than they believe a life is worth. Morons. This PISSES me off.

vickie h · 03-06-2009, 12:42 PM

Amen, Brenda! I agree with you totally. It comes right down to what a life is worth..and apparently it's not worth very much (must be inflation, huh?).
Love, Vickie

Ellie F · 03-06-2009, 12:56 PM

Totally agree Brenda.What's even more annoying is that the Prime Minister has very recently been on national TV telling the Nation that he is committed to doing everything to stamp out cancer and remove the fear that thousands have suffered over the years! What a load of rubbish.He also tells us that he has met your new President and is strengthening the special relationship between our countries in all areas including healthcare. Frankly the only strength i've got is from the brilliant,courageous,dynamic women who access this support group. Ellie

Jean · 03-06-2009, 02:45 PM

Ellie,
I am deeply saddened to learn that Marie Rogers has lost her battle. Many women owe their life to her effort in achieving success in court for early stage patients.

As far as the rest of your news - I am equally upset.
Has the entire world gone mad?

Jean

Bill · 03-07-2009, 03:46 PM

I'm sorry to hear about the loss of another brave woman. I still don't know why some in the US want to go this route. I'm trying to be a-political here, out of respect for the site, but I'm about to explode in a non-political way!

Jackie07 · 03-07-2009, 09:23 PM

I've always been grateful to have good insurance whenever I was diagnosed with a serious illness. There was one time (in 2003) that I proposed to hubby that perhaps we should drop the insurance (after my MRI showed stable nodules) to save money since I had lost my job. He mentioned it to his Dad over their morning coffee and my Father-in-law began to pay for our monthly premium. (He trusted us so much that he just give hubby a check book and eventually put hubby's name on the account.)

Barely three months after we had taken his kind (and smart)offer , I was diagnosed with invasive breast cancer. The total bill amounted to $60,000.00 - that was cheap compared to the Herceptin stuff in 2007. (I think each 3 weeks of TCH and labs cost over $25,000.00. And MUGA scan was very, very expernsive - over $25,000.00 also[?])

This round of recurrence we've been relying on my side of the family - foreign aid - after I had lost my job 'again'. And yes, we do have insurance - the very expensive, all self-paid COBRA.

My Mother had fought for my Oldest Sister's pneumonia shots (some very expensive antibiotic back in the 60's) when the hospital demanded for prepayment of the drug. "Never, never, never give up", so said Sir Winston Churchill. I believe my Mother has been immersed in this WWII spirit all her life.

Perhaps I have inherited her fighting spirit - thank you, Mom. And thanks to all the fighters like Ann Marie Rogers.

chrisy · 03-08-2009, 01:16 PM

Brenda, I'm not at all nonchalant about it. I'm scared to death, but feel utterly powerless to do anything about it.

07-03-2009, 09:03 PM

Extremely sad news.
Anyone who was in Sheffield will know what an integral part he was in the whole operation there.
He gave me tough love when I needed it and advice when I didnt want to hear it.
I always felt like I was in safe hands with the man.

Best wishes to his family.