We are here to break the isolation so often felt by those with these rare diseases, and we would be delighted to welcome you into our 'family'.
The aim of our website is to direct you as quickly as possible to our support services and to information you can trust on multiple endocrine neoplasia (MEN) types 1, 2, and 3, medullary thyroid cancer (MTC), familial medullary thyroid cancer (FMTC), adrenal gland tumours (phaeochromocytomas), parathyroid hyperplasia, paragangliomas, familial isolated pituitary adenoma (FIPA) and succinate dehydrogenase (SDH) disorders.
If you or a member of your family has been affected by medullary thyroid cancer, this concerns you. The National Institute for Health and Care Excellence (NICE) recently reviewed the use of the tyrosine kinase inhibitors, cabozantinib and vandetanib for treating MTC that has progressed and cannot be cured by surgery. Their report was published today and shows their intention to completely withdraw access to these drugs by the NHS. Whilst these drugs cannot cure someone of MTC, they have been shown in studies to help slow down disease progression. They can also be more effective if the person and/or the tumour has a RET mutation (as in MEN2), but NICE decided not to take this into consideration since testing tumours is not funded by the NHS. In addition, they are recommending against these drugs because patients with metastatic MTC patients live too long! Both drugs can currently be access through the Cancer Drugs Fund (CDF). NICE however, concluded at a recent meeting, that both drugs should be withdrawn from the CDF and that they should not be made available at al for treatment of MTC on the NHS. This leaves people with MTC with just one chance of cure - surgery. Of course, this rarely works if someone is diagnosed with disease that has already spread.We think that NICE is being short-sighted in applying the same decision making strategies to such a rare cancer as is used for more common cancers. We now have one last chance to push NICE to reconsider this drastic action and we need your help! Tell them what you think. If you or someone you know has used either drug and it made a difference, tell them. If you would like the choice of access to these drugs in the future, tell them. If you believe that they should have taken RET mutation patients into account, tell them. If you think that excluding these drugs from the CDF because patients live too long is unfair, tell them. If you think rare cancers like MTC should be given special consideration, tell them. If you’re concerned that there are no other treatments available for metastatic MTC, tell them!We need as many people as possible to comment on the NICE consultation report and tell them what you think. The deadline for doing this is September 14th meaning that we have just 2 weeks to mount a decisive response!Thank you and good luck!NB: Access for those people already being treated with either cabozantinib or vandetanib via the CDF will continue unaffected.
AMEND is pleased to bring you our latest publication: 'Starting a Family: Your Choices'. Funded by a grant from the Society for Endocrinology, this publication aims to provide an introduction to the different conception options available to someone with MEN, and some of the practical, physical and emotional aspects of each of these. We also signpost you to sources of additional information, support and advice. Download for free or order a free hard copy if you are a registered patient member of AMEND.
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