Post by Deanne Jenkyns on Nov 10, 2007 11:16:16 GMT 1
Hi All,
Met with David Miliband yesterday and presented him with this. He was shocked by the fact that NICE were taking so long to reach it's decision when they are supposed to fast track cancer drugs, he will be writing to them. He was also shocked when I told him that Jimmy was able to run up and down the stairs and was back at work! He is also going to look into the fact that LC gets less than 4% of government funding as he was also unaware of that. Hopefully this has done some good?
Post code Lottery drug funding for cancer patients
We have won funding for Tarceva through South Tyneside PCT:-
• Where does it leave other patients?
• Why is the government letting the NHS get away with post code lottery funding?
• How come it’s acceptable for a patient to be given a drug in Manchester to name just one area but not here?
• When I started out on this cause and set up my website I made a statement that I would help others fighting for drugs. I need to get some weight behind this campaign and I believe you’re the man to do it.
• I know of at least three patients who have died by the time they were able to raise funds for Tarceva. I find this very distressing, it is appalling that patients are having to educate themselves about drugs and then finding themselves having to fight for them.
• Primary care Trusts are hiding behind Nice guidelines and the government is turning a blind eye!
• Approved cancer drugs are supposed to be fast tracked by NICE. That is also being ignored and it is a complete joke! I attended an appeal hearing on June 6th at NICE headquarters in London about Tarceva. We were told a decision would be in 3 weeks. It is now September 28th the decision is now to be Monday 1st October! That is 4 months! How many patients do you think have died in 4 months who could have benefited from this Drug??
• Lung cancer receives less than 4% of funding why? When it is the biggest cancer killer. Death rates are higher than breast cancer. 38,000 new cases per year.
• I have recently been in touch with a Man called Dave Hill who lives in Darlington in my estimation around 38 miles who is also having to raise funds for Tarceva. His six year old daughter has been putting up posters please don’t let my daddy die!
continued
Jean and Harry white pensioners from Cumbria who I have met also have found themselves having to raise funds to self fund Tarceva. Mrs White launched the campaign through the News & Star. Their local PCT are also now funding the drug.
Seems the way to go is involve the media…but why should we have too!
Roche have introduced TAP while they await for NICE to reconsider issuing guidelines for Tarceva .
Patients are still having problems gaining access to the drug Tarceva even though Roche have introduced TAP (Tarceva Access Programme) Roche have reduced the cost of the drug so it falls in line with the chemotherapy drug docetaxol. When a trust applies to go onto TAP it costs them no more to give the patient Tarceva than it would docetaxol.
It has been brought to my attention that a meeting with Darlington PCT today is taking place on weather to fund the drug for a Darlington patient whether or not the [patient is Dave Hill or not I have yet to establish?
Cancer research are also loosing out because people are now reluctant to give to the charity because more and more stories like ours are being brought to the media.
Met with David Miliband yesterday and presented him with this. He was shocked by the fact that NICE were taking so long to reach it's decision when they are supposed to fast track cancer drugs, he will be writing to them. He was also shocked when I told him that Jimmy was able to run up and down the stairs and was back at work! He is also going to look into the fact that LC gets less than 4% of government funding as he was also unaware of that. Hopefully this has done some good?
Post code Lottery drug funding for cancer patients
We have won funding for Tarceva through South Tyneside PCT:-
• Where does it leave other patients?
• Why is the government letting the NHS get away with post code lottery funding?
• How come it’s acceptable for a patient to be given a drug in Manchester to name just one area but not here?
• When I started out on this cause and set up my website I made a statement that I would help others fighting for drugs. I need to get some weight behind this campaign and I believe you’re the man to do it.
• I know of at least three patients who have died by the time they were able to raise funds for Tarceva. I find this very distressing, it is appalling that patients are having to educate themselves about drugs and then finding themselves having to fight for them.
• Primary care Trusts are hiding behind Nice guidelines and the government is turning a blind eye!
• Approved cancer drugs are supposed to be fast tracked by NICE. That is also being ignored and it is a complete joke! I attended an appeal hearing on June 6th at NICE headquarters in London about Tarceva. We were told a decision would be in 3 weeks. It is now September 28th the decision is now to be Monday 1st October! That is 4 months! How many patients do you think have died in 4 months who could have benefited from this Drug??
• Lung cancer receives less than 4% of funding why? When it is the biggest cancer killer. Death rates are higher than breast cancer. 38,000 new cases per year.
• I have recently been in touch with a Man called Dave Hill who lives in Darlington in my estimation around 38 miles who is also having to raise funds for Tarceva. His six year old daughter has been putting up posters please don’t let my daddy die!
continued
Jean and Harry white pensioners from Cumbria who I have met also have found themselves having to raise funds to self fund Tarceva. Mrs White launched the campaign through the News & Star. Their local PCT are also now funding the drug.
Seems the way to go is involve the media…but why should we have too!
Roche have introduced TAP while they await for NICE to reconsider issuing guidelines for Tarceva .
Patients are still having problems gaining access to the drug Tarceva even though Roche have introduced TAP (Tarceva Access Programme) Roche have reduced the cost of the drug so it falls in line with the chemotherapy drug docetaxol. When a trust applies to go onto TAP it costs them no more to give the patient Tarceva than it would docetaxol.
It has been brought to my attention that a meeting with Darlington PCT today is taking place on weather to fund the drug for a Darlington patient whether or not the [patient is Dave Hill or not I have yet to establish?
Cancer research are also loosing out because people are now reluctant to give to the charity because more and more stories like ours are being brought to the media.
LC charity Ball
