Guest guest Posted November 17, 2009 Report Share Posted November 17, 2009 Our Lottie- always thinking.   You are smart as a whip !!!!   I'm all for circulating a petition. ________________________________ From: Lottie Duthu <lotajam@...> CML < > Sent: Tue, November 17, 2009 1:19:25 PM Subject: [ ] Across the Pond  Dear , I would love to be across the pond right now, I think it would be lovely to visit the UK at this time of year, as I have always been there during the summer and mostly on my birthday, as it falls exactly in the middle of the year. On your thought of the drug for T315i, I think they should offer the drug as on " orphan drug " to have available for people who do have the T315I mutation. This is a very difficult part of the disease to treat. I know some big pharmas keep a small stash of rare drugs for orphan diseases just for the few patients, and I would hope they would extend it to everyone and not " shelve " it because it would not generate income. I am thinking they would do it for humanitarian reasons and not for profit. As for the 3rd generation drugs, I think there will always be a need to improve on the 1st and second generation formulas. They keep getting better and better with fewer side effects, it's like the difference between riding a bus and flying, the latter being much faster. Maybe we should start a petition for all CMLers to sign and send to the drug company you mentioned in your letter. If we had a petition we could download and mail, it would be more effective than an email. Besides, the post office needs the business. LOL. I'm sure LLS would also furnish a copy of the petition to everyone, since most people are aware of their organization and what they do for patients, while limiting the signatures only to the group on this list would be less effective in numbers. We could be a giant voice showing our strength and our voices will be heard. Hands & hearts, Lottie Duthu Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 18, 2009 Report Share Posted November 18, 2009 Hi Lottie, thanks for your email, the UK is becoming pretty around this time of year, when it is cold, clear and the sun is shining. We call it 'CRISP outside'! I just like to snuggle then all the way through to Spring. Thanks for your post, it seems us CML suffers in the UK have a new fight on our hands - NICE, who are the 'accountants' for our National Health Service have decided not to approve high dose Imatinib, Dasatinib or Nilotinib for use as a 2nd line treatment after an initial Gleevic 'failure' - The details can be found on the below link, but they are basically suggesting that the cost is too high vs. the benefit and we should use BMTs as an effective 2nd line treatment! Unless, we can do a trial comparing all 3 treatments ALSO INCLUDING an additional group receiving 'traditional therapeutic support'. I cannot believe they would deny people in the UK effective treatment! http://www.cmlsupport.org.uk/?q=node/1258 Thanks for listening to my rant! > > Our Lottie- always thinking.   You are smart as a whip !!!!   I'm all for circulating a petition. > > > > > ________________________________ > From: Lottie Duthu <lotajam@...> > CML < > > Sent: Tue, November 17, 2009 1:19:25 PM > Subject: [ ] Across the Pond > >  > Dear , > I would love to be across the pond right now, I think it would be lovely to visit the UK at this time of year, as I have always been there during the summer and mostly on my birthday, as it falls exactly in the middle of the year. On your thought of the drug for T315i, I think they should offer the drug as on " orphan drug " to have available for people who do have the T315I mutation. This is a very difficult part of the disease to treat. I know some big pharmas keep a small stash of rare drugs for orphan diseases just for the few patients, and I would hope they would extend it to everyone and not " shelve " it because it would not generate income. I am thinking they would do it for humanitarian reasons and not for profit. > > As for the 3rd generation drugs, I think there will always be a need to improve on the 1st and second generation formulas. They keep getting better and better with fewer side effects, it's like the difference between riding a bus and flying, the latter being much faster. Maybe we should start a petition for all CMLers to sign and send to the drug company you mentioned in your letter. If we had a petition we could download and mail, it would be more effective than an email. Besides, the post office needs the business. LOL. I'm sure LLS would also furnish a copy of the petition to everyone, since most people are aware of their organization and what they do for patients, while limiting the signatures only to the group on this list would be less effective in numbers. We could be a giant voice showing our strength and our voices will be heard. > Hands & hearts, > Lottie Duthu > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 19, 2009 Report Share Posted November 19, 2009 Hi Like you I am in the UK and was Dx this year (27 May). Like you Gleevec/Glivec seems to be working well but I suspect you (a) feel concerned that your safety nets may have been taken away and ( concerned for those who may already be in need of them. That is how I feel. Folks across the Pond may not also be aware that our somehwhat bizarre system is such that this decision does not apply to Scotland - where the NHS has already agreed to fund the drug for second line. I feel a strong sense of outrage at that difference - but we should not stand silent. I will be responding personally to NICE and writing to my MP, Gordon Brown and Cameron (who is likely to be the next Prime Minister so needs to know) about this, including what NICE propose by way of trial which as you say would include a group who get essentially no modern treatment. (How will they recruit for this??). I know the medics in the area are up in arms about this and there will be an appeal but looks like the CML fraternity needs to be vocal once again. Good luck with your own fight against the disease.  ________________________________ From: <pesty@...> Sent: Wed, November 18, 2009 10:51:12 PM Subject: Re: [ ] Across the Pond  Hi Lottie, thanks for your email, the UK is becoming pretty around this time of year, when it is cold, clear and the sun is shining. We call it 'CRISP outside'! I just like to snuggle then all the way through to Spring. Thanks for your post, it seems us CML suffers in the UK have a new fight on our hands - NICE, who are the 'accountants' for our National Health Service have decided not to approve high dose Imatinib, Dasatinib or Nilotinib for use as a 2nd line treatment after an initial Gleevic 'failure' - The details can be found on the below link, but they are basically suggesting that the cost is too high vs. the benefit and we should use BMTs as an effective 2nd line treatment! Unless, we can do a trial comparing all 3 treatments ALSO INCLUDING an additional group receiving 'traditional therapeutic support'. I cannot believe they would deny people in the UK effective treatment! http://www.cmlsuppo rt.org.uk/ ?q=node/1258 Thanks for listening to my rant! > > Our Lottie- always thinking.   You are smart as a whip !!!!   I'm all for circulating a petition. > > > > > ____________ _________ _________ __ > From: Lottie Duthu <lotajam@... > > CML <groups (DOT) com> > Sent: Tue, November 17, 2009 1:19:25 PM > Subject: [ ] Across the Pond > >  > Dear , > I would love to be across the pond right now, I think it would be lovely to visit the UK at this time of year, as I have always been there during the summer and mostly on my birthday, as it falls exactly in the middle of the year. On your thought of the drug for T315i, I think they should offer the drug as on " orphan drug " to have available for people who do have the T315I mutation. This is a very difficult part of the disease to treat. I know some big pharmas keep a small stash of rare drugs for orphan diseases just for the few patients, and I would hope they would extend it to everyone and not " shelve " it because it would not generate income. I am thinking they would do it for humanitarian reasons and not for profit. > > As for the 3rd generation drugs, I think there will always be a need to improve on the 1st and second generation formulas. They keep getting better and better with fewer side effects, it's like the difference between riding a bus and flying, the latter being much faster. Maybe we should start a petition for all CMLers to sign and send to the drug company you mentioned in your letter. If we had a petition we could download and mail, it would be more effective than an email. Besides, the post office needs the business. LOL. I'm sure LLS would also furnish a copy of the petition to everyone, since most people are aware of their organization and what they do for patients, while limiting the signatures only to the group on this list would be less effective in numbers. We could be a giant voice showing our strength and our voices will be heard. > Hands & hearts, > Lottie Duthu > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 19, 2009 Report Share Posted November 19, 2009 Hi , I will be right there campaigning with you. Lets hope people power wins through! > > > > Our Lottie- always thinking.   You are smart as a whip !!!!   I'm all for circulating a petition. > > > > > > > > > > ____________ _________ _________ __ > > From: Lottie Duthu <lotajam@ > > > CML <groups (DOT) com> > > Sent: Tue, November 17, 2009 1:19:25 PM > > Subject: [ ] Across the Pond > > > >  > > Dear , > > I would love to be across the pond right now, I think it would be lovely to visit the UK at this time of year, as I have always been there during the summer and mostly on my birthday, as it falls exactly in the middle of the year. On your thought of the drug for T315i, I think they should offer the drug as on " orphan drug " to have available for people who do have the T315I mutation. This is a very difficult part of the disease to treat. I know some big pharmas keep a small stash of rare drugs for orphan diseases just for the few patients, and I would hope they would extend it to everyone and not " shelve " it because it would not generate income. I am thinking they would do it for humanitarian reasons and not for profit. > > > > As for the 3rd generation drugs, I think there will always be a need to improve on the 1st and second generation formulas. They keep getting better and better with fewer side effects, it's like the difference between riding a bus and flying, the latter being much faster. Maybe we should start a petition for all CMLers to sign and send to the drug company you mentioned in your letter. If we had a petition we could download and mail, it would be more effective than an email. Besides, the post office needs the business. LOL. I'm sure LLS would also furnish a copy of the petition to everyone, since most people are aware of their organization and what they do for patients, while limiting the signatures only to the group on this list would be less effective in numbers. We could be a giant voice showing our strength and our voices will be heard. > > Hands & hearts, > > Lottie Duthu > > > > Quote Link to comment Share on other sites More sharing options...
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