Please note this post is now historic information – PRRT (Lutathera) was eventually approved for use in UK. See the following post for the very latest on PRRT worldwide – CLICK HEREI was extremely disappointed to learn of the decision to remove PRRT (Lutetium or Yttrium) from the Cancer Drugs Fund (CDF). You can read the detail of the decision here: CDF Statement. PRRT has regularly been described by NET specialists and patients as the “magic bullet” due to its potential to shrink or kill tumours. This is the second Neuroendocrine Cancer treatment to be withdrawn this year, after the earlier decision on Everolimus (Afinitor) in April . In fact, the recent cuts to the CDF were described in the media as a “massacre” as the list was reduced by two-thirds. You can see the current CDF list by clicking here. The timing of these cuts is extraordinary and when you look at the output from recent trial reports presented at the Europetwo-thirdsCongress (ECC) for both Neuroendocrine Cancer related drugs recently cut: Everolimus The RADIANT-4 trial said that Everolimus had a significant effect in non-functional NETs which are very difficult to treat. This is particularly important for Lung NETs as no treatment currently exists. The RADIANT-2 trial had already proven the efficacy of the drug for advanced carcinoid (in conjunction with Octreotide) and the RADIANT-3 trial proved good data for treatment with advanced functional pNETs. Read the report here. PRRT – 177Lu-DOTATATE The ECC also reported a significant finding from the NETTER-1 trial. Treatment with the novel peptide receptor radionuclide therapy (PRRT) Lutathera significantly increased progression-free survival (PFS) over Octreotide LAR (Sandostatin) in patients with advanced midgut NETs. It shows a PFS that has never been shown before in this type of cancer adding that this was significant because these patients have a real unmet medical need. Lutathera is a 177Lu-DOTATATE PRRT that targets somatostatin receptors, which are overexpressed in about 80% of NETs, to deliver cytotoxic radiation directly to the tumour – See more by clicking here. To fully understand the background to the problem, you need to understand both PRRT and the Cancer Drugs Fund and a quick primer on both follows. What is PRRT? For those who are not entirely sure what PRRT is, here’s a quick primer from The Society of Nuclear Medicine and Molecular Imaging: Peptide receptor radionuclide therapy (PRRT) is a molecular therapy (also called radioisotope therapy) used to treat a specific type of cancer called neuroendocrine carcinoma or NETs (neuroendocrine tumours). PRRT is also currently being investigated as a treatment for prostate and pancreatic tumours. In PRRT, a cell-targeting protein (or peptide) called octreotide is combined with a small amount of radioactive material, or radionuclide, creating a special type of radiopharmaceutical called a radiopeptide. When injected into the patient’s bloodstream, this radiopeptide travels to and binds to neuroendocrine tumour cells, delivering a high dose of radiation to the cancer. The cells in most neuroendocrine tumours have an abundance (called an overexpression) of a specific type of surface receptor—a protein that extends from the cell’s surface—that binds to a hormone in the body called somatostatin. Octreotide is a laboratory-made version of this hormone that binds to somatostatin receptors on neuroendocrine tumours. In PRRT, octreotide is combined with a therapeutic dose of the radionuclides. Yttrium 90 (Y-90) and Lutetium 177 (Lu-177) are the most commonly used radionuclides. What conditions are treated with PRRT? PRRT may be used to treat NETs, including carcinoids, islet cell carcinoma of the pancreas, small cell carcinoma of the lung, pheochromocytoma (a rare tumor that forms in the adrenal glands), gastro-enteropancreatic (stomach, intestines and pancreas) neuroendocrine tumors, and rare thyroid cancers that are unresponsive to treatment with radioiodine. PRRT is an option for patients: • who have advanced and/or progressive neuroendocrine tumours • who are not candidates for surgery • whose symptoms do not respond to other medical therapies. The main goals of PRRT are to provide symptom relief, to stop or slow tumor progression and to improve overall survival. These video’s on Nuclear Medicine are by Professor Val Lewington – the UK’s most experienced person on PRRT. I was at this presentation and she is absolutely amazing. It’s slightly dated but still very current. This presentation also covers Octreotide and Gallium 68 scans under the heading of Nuclear Medicine – if you are still unsure about PRRT or Nuclear Medicine in general, these videos are definitely worth a watch. The Role of Nuclear Medicine in NETs Q&A Sessions This is also a great source of information maintained by NET Patients in the USA. Click here What was the Cancer Drugs Fund? The Cancer Drugs Fund was money the UK Government has set aside to pay for cancer drugs that haven’t been approved by the National Institute for Health and Care Excellence (NICE) and aren’t available within the NHS in England. This may be because the drugs haven’t been looked at yet. Or it may be because NICE have said that they don’t work well enough or are not cost-effective. This was introduced as a ‘political statement’ by the then Conservative/Liberal Democrat coalition government in 2010/11. The aim of the fund is to make it easier for people to get as much treatment as possible. The Cancer Drugs Fund was for people who live in England. The governments of Scotland, Wales and Northern Ireland decide on how they spend money on health and so far haven’t decided to have a similar programme. Worth noting that on 1 April 2013, NHS England took on responsibility for the operational management of the Cancer Drugs Fund (CDF). The NHS spends approximately £1.3 billion annually on the provision of cancer drugs within routine commissioning. The CDF was established as an additional funding source to this. There was a national list of drugs available through the fund – you may have heard this called the priority list. If you met the conditions for a drug that was on the list, you should have been able to have it on the NHS if you live in England. The Fund would also have considered applications on behalf of individual patients for other drugs that are not on the list. However, under the new system, Individual funding requests (IFRs) relating to cancer drugs will no longer be considered via the CDF process. All IFRs relating to cancer drugs will now be considered using NHS England’s single, national IFR system, which was updated in January 2016. The new system came into force on 29 July 2016 and you can read more if you click this link Summary Although the decision is shocking to most, it was not totally unexpected as the Government and NHS have been hinting for some time that the costs of the fund need to be reined in. In any case if was only ever a temporary arrangement until another model could be put into place. There is a political element as the fund was set up by David Cameron with healthcare experts suggesting that it made no sense as a response to rising drug prices. Moreover, by topping up the fund, the same experts claimed this was making the manufacturers the real beneficiaries of the fund as they have been able to sell their drugs to the NHS at prices that are unaffordable (and therefore unsustainable) for the NHS. UK NET patients who have advanced and/or progressive neuroendocrine tumours which cannot be removed by surgery and whose symptoms do not respond to other medical therapies, still need help.
Ironically, the UK seems to be intent on cutting provision of the treatment (at least for NHS patients) as the US is trying very hard to formally introduce it. This is a disgraceful situation and advanced Neuroendocrine Cancer patients and those who may need this treatment in the future are being terribly let down.
Thanks for reading.
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Hello Ronny
I saw a ‘thing’ about how Dr should keep a eye out for zebras. It’s about how NETS can some times be misdiagnosed. Could you put your hands on a copy and please email it to me. Many thanks for all the info you provide.
Best regards Jim Borley
On 7 September 2015 at 16:28, Ronny Allan – Living with Neuroendocrine
Hi Jim, there are dozens of examples of this, which country? p.s. I don’t push the zebra thing, I don’t think Doctors like being reminded of that analogy! Blog on this shortly.
Your are quite right Ronnie lets hope the decision is overturned. Happy to help in the event it is not. The immediate question is why would they make a decision without the results of the latest clinical trials. We could guess at answers but speculation is probably not helpful. At the heart of most of the questions is full publication of clinical trial data. The main point in commenting was simply to make sure you were aware of the use of the Lutate /PRRTname. I know you are pretty much on the ball but it did confuse me for some time.
That’s fine Linda – Dr John Leyden from Unicorn had already been in touch offering advice (we may need it!)
Ronnie This is bad news indeed. You may be aware that the Unicorn Foundation in OZ have been doing a lot of campaigning on PRRT they call it Lutate and they are funding a clinical trial. It might be worth hooking up with them. https://unicornfoundation.org.au/page/3/advocacy. If you put Lutate into google there are research papers. I have not had time to see if these papers cover GEP NETs I did some digging some time ago on phaeo and lutate the results then looked good. There are many questions about this decision which do not seem to be answered in the decision.
Thanks Linda, I’m certainly happy to look at other campaigns. I think there is already sufficent knowledge on PRRT – it has been in use for 3 years. However, I’m not going to charge off into the sunset just yet as there is background activity going on which may result in the decision being overturned. NET Patient needs to lead with our help. Can you say which questions you think have not been answered?
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!
I’m wondering how Sandostatin is paid for in other jurisdictions? Here in Canada, cancer drugs are typically paid for by the government, but Sandostatin 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.
This is awful. I’m a bit confused though reading this. ..does this mean they are stopping funding for the Octreotide drug? I have just started having this monthly.
I don’t understand why PNETS and other NETS are not recognised when it comes to funding. It’s not fair and we need to fight for this.
No – just PRRT
Unbelievable! PRRT is the only hope for some of us, with the alternative being a slow decline which would not only be appallingly upsetting to families but which would also render us unproductive members of society, rather than PRRT maintaining us in better form and staying useful.
This MUST be fought!
I take Afinitor daily and I get a monthly Sandostaton injection. Last December and January I had a Yttrium 90 treatment and it work quite well. Unfortunately a couple other patients from my oncologist had the same treatment and recently passed away. It could be that they were much older and more frail. I have been living with this almost 13 years and I am still working full time. I feel very blessed.