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Ronny was diagnosed with Metastatic Neuroendocrine Cancer in July 2010 after presenting with weight loss, iron deficiency anaemia and facial flushing (Carcinoid Syndrome).
I was extremely disappointed to learn of the decision to remove PRRT (Lutetium or Yttrium) from the Cancer Drugs Fund (CDF) as reported by the NET Patient Foundation. 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 and potentially kill tumours.
This is the second Neuroendocrine Cancer treatment to be withdrawn this year, after the earlier decision on Everolimus (Afinitor) in April (...although instead Novartis will supply Afinitor to patients with pNETs on a ‘named patient basis’, upon request from oncologists through their local clinical commissioning group (CCG)).
Within the NET medical community, the NETTER1 study is considered to be quite strong and the data is improving with time. An expert interpretation of the latest data from the trial has been submitted to the CDF with the hope that this will persuade them to reverse the decision. If this is unsuccessful, the Neuroendocrine community will almost certainly fight the decision and I stand by to help build a convincing case for the continued provision of PRRT for all eligible patients including any associated PR/lobbying. Are you with me?
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. 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 tumors). PRRT is also currently being investigated as a treatment for prostate and pancreatic tumors.
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 tumor cells, delivering a high dose of radiation to the cancer.
The cells in most neuroendocrine tumors 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 tumors. 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
This is also a great source of information maintained by NET Patients in the USA. Click here
What is the Cancer Drugs Fund?
The Cancer Drugs Fund is 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 statment' by the then Conserative/Liberal Democrat coaltion 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 is 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.
The Cancer Drugs Fund will continue until the end of March 2016. 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.
The CDF has provided an additional £200m each year since then to enable patients to access drugs that would not otherwise have been routinely available from the NHS. NHS England recently pledged an additional £160m to strengthen the fund which is due to end in 2016.
There is a national list of drugs available through the fund - you may hear this called the priority list. If you meet the conditions for a drug that is on the list, you should be able to have it on the NHS if you live in England. The Fund will also consider applications on behalf of individual patients for other drugs that are not on the list. This is usually to treat rare cancers.
The list includes information about which type of cancer the drug can be used for and under what circumstances. So it may also include information about the stage of disease and what other treatments you must have already had, or should not have had. This means that although a drug may be funded for one type of cancer, at a particular stage, funding may not be available for the same cancer at a different stage or for another type of cancer.
You can read more and see the latest version of the current list if you click this link and then scroll down for the PDF file.
Although the decision is shocking to most, it was not totally unexpected as the Government and NHS have been hinting for sometime that the costs of the fund need to be reined in. In any case if was only ever a temporary arrangement until a 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.
Nonetheless unhappiness seems to be the prevailing wind and this decision and others including the removal of Abraxane®for Pancreatic Cancer patients (their petition is currently approaching 8,000 signatures after only 3 days) is a common theme as NHS England continue their cull.
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 and I eagerly await the results of any appeal or reconsideration of the decision on PRRT.
I will keep this blog 'live' in order to add information as things progress.
Thanks for reading
Ronny Disclaimer My Diagnosis and Treatment History
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