Hi Nick finally got hold of the right person this is there response. Ive been busy drumming up support for Anna Schuh's petition
I understand you contacted my colleague Helen Marsden via Facebook about our response to the recent Cancer Drugs Fund delisting announcement. As Head of Public Affairs, she passed your query over to me to let you know what we’re doing in response.
The announcement on the delisted medicines was a real blow for patients. Alongside blood cancer drugs no longer being available, many other cancers were also hit in a similar way. NHS England is still in the process of negotiating with some of the pharmaceutical firms involved about the cost of medicines, so we will not have a final picture of which drugs have been removed from the CDF until November. In addition, a new system of assessing new medicines will be introduced in April 2016. We don’t know yet exactly what this new system will look like, but the Government will be launching a consultation on it very shortly to set out their provisional plans, and ask interested people and organisations to respond. Certainly we’re far from certain about the long term future for the delisted drugs, and until we know more about the plans for April, it’s hard for patients to know whether treatments will be made available again.
We are obviously very disappointed and concerned by the announcement. We have written to NHS England to express our concern on behalf of blood cancer patients, and ask for reassurance as to how the plan to ensure innovative medicines reach the patients that need them. We are working with our clinical advisors to understand whether patients will be able to access any of the delisted medicines through alternative routes on the NHS (for example, their clinician making using the Individual Funding Request process). We will also respond to the Government consultation on the new drug assessment process when it is published, and make the case that patients need to access the full range of medicines available, and the new system will need to establish how between the Government, the NHS and industry, a pricing and access system can deliver for patients.
In addition, we are actively involved in the Government’s Accelerated Access Review, and have responded to the review to set out ideas that can speed up and increase the levels of clinical research in the NHS, take some of the financial risk for industry out of the development of drugs, which should allow them to price them lower, and how Government can encourage researchers to work together better to share learning and ensure we get to better treatments faster. This line of work is more medium to long term compared to the immediate response to the CDF delisting, but it represents the Government’s attempts to ensure long term patient access to all drugs, so it is important we share our knowledge and expertise.
We are also due to meet with other blood cancer charities in a couple of weeks to plan some joint campaigning activity on behalf of blood cancer patients. There is also work being undertaken by the Cancer Campaigning Group and Cancer 52, two coalition organisations consisting of all the major cancer charities in the UK – alongside the work we are doing ourselves, working in partnership with other major cancer charities will add strength to campaigning efforts to get patients access to the drugs the need.
The anger on the delisting announcement was felt far and wide across the cancer community. We will use our relationships with senior figures in Government, industry and at other charities to make sure we’re doing all we can to ensure patients can access the most effective medicines for their cancer.
If you have any questions or thoughts, please don’t hesitate to get in touch.