Hi everyone, my partner was diagnosed with stage 4 non small cell lung cancer in october 2015, she received chemotherapy initially, which didn't agree with her and after 2 rounds, was sent home for palliative care, she was given 3-4 months. Fortunately we got a second opinion and found a consultant who enrolled her on an early access to medicine scheme for immunotherapy (nivolumab) which she started in March 2016. She received 2 years on this scheme, and from March 2018, she has received her treatment via the cancer drug fund. At a recent consultation we were told that you can only be funded for a maximum of 2 years by the cdf which means that her treatment is due to end in March 2020. This news came as a big shock as my partner has responded to treatment excellently and I have been told by her consultant that her response is in the top 30% in the UK. Not only were we told that her treatment is being stopped, but the worst news of all is that in the future if her disease progresses there is no way she can have nivolumab again, even though it has proven to work for her before. I find this position by nhs England and the cdf absolutely unbelievable, she will basically be denied life saving treatment because she has effectively used up her quota. Since hearing this news I have been trying to find other people in a similar position so we can find a way of getting these life saving drugs prescribed as long as needed, and not as long as budgets permit. I think it is not only unethical but also completely immoral to deny patients medication that is clearly working for them and something must be done to change this. If anyone has any information on how to get continued funding for immunotherapy for patients please send a reply.
Many thanks
