For the second time this year there had been financial cuts announced for treatment for NET patients in England. Firstly Everolimus, now PRRT. You can read more on the net patient foundation site at
http://www.netpatientfoundation.org/2015/09/prrt-withdrawn-from-the-cancer-drugs-fund/
East Lothian, UK
smile each and every day 
How frustrating! In the Canadian province where I reside, funding for Lutetium treatments was suspended by the government early in 2013, a few months before I was diagnosed. Fortunately, this situation was temporary pending further proof of it’s safety and success. A government funded clinical trial was set up which includes all the patients who were receiving Lutetium prior to that time as well as any new patients such as myself. It took about a year to get all the paperwork done and all the necessary approvals in place, a time of great frustration for those of us who needed the treatment, but thankfully NETS is usually a slow growing disease!
Here in Canada, cancer drugs are typically paid for by the government, but Sandostatin (Octreotide) is not. I am fortunate to have an excellent benefit plan that covers the entire cost, but this will run out two years from now when when I turn 65 and I have no idea how I’ll pay for the drug after that. I receive an injection once every 28 days and each one costs almost $2400 Canadian!
LikeLiked by 1 person
Yes it is very frustrating. While the UK is a whole. I live in northern UK – Scotland. We have our own health board. Decisions made separate from England. I get lanreoride 120mg every 21 days. I do not need to pay for this. I am on 26 different prescribed meds. Including steroids, creon, fortisips, etc So fortunate to get this paid by the Scottish government. Sounds like you are fortunate to have a good health plan. How are you doing?
LikeLike
I am doing very well. In fact, I feel 100% healthy, thanks be to God! I have five NETS tumours. The primary one in my colon is shrinking and the others have remained the same since diagnosis two years ago. I’m now on a maintenance plan with Lutetium treatments every six months. The next one will be Oct. 20. I almost feel guilty when I walk through the cancer clinic and see how poorly some people are doing or read about what patients like you are going through.
LikeLiked by 1 person
Good to hear you are feeling well. Never feel guilty you are feeling ok and better than some. I’m really happy for you that your treatment is doing the business and life is grand. Have a good day 😀
LikeLiked by 1 person
Not good news at all.
LikeLike