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Unfortunately, today (15 Aug 23) NICE has published their decision not to make Tebentafusp available for NHS patients with HLA-A*02:01-positive unresectable or metastatic uveal melanoma in England and Wales.  Tebentafusp is a treatment for people with stage 4 disease who need treatment for tumours outside the eye. This decision will not affect anyone already receiving […]

This morning, two OcuMel UK members took to the radio and spoke to Nick Ferrari at LBC. Megan McClay was diagnosed with uveal melanoma in 2020 at just 26, but she learnt last year that she needed further treatment has her cancer had spread.  Megan has been told a treatment called Chemosaturation can help her,

Patients with the most common form of eye cancer which has spread to other parts of the body are being denied access to a treatment which can significantly boost survival. Around 750 cases of ocular – or uveal – melanoma are diagnosed in the UK every year and around 50 per cent of these lead

The NICE appraisal of Tebentafusp continues with today’s publication of an Appraisal Consultation Document (ACD), setting out their draft recommendation for Tebentafusp. It is quite normal for appraisals of this type to go to a consultation stage rather than giving immediate approval. This can happen when more information is needed.  NICE have today shared its

Some of you may know Jo Gumbs, but for those of you that don’t, for #RareDiseaseDay we thought it would be good to hear from her on why OcuMel UK was founded and how she sees the charity developing.    Jo has been our National Director for a number of years and our board of

Would you be interested to meet with other members of OcuMel UK? Seeing other people on Zoom has become more normal for some people, but can it ever replace the friendship built over a coffee? We want to build support within our community so that nobody has the feeling of isolation.  With Covid restrictions allowing

  OcuMel UK are pleased to share that NICE have issued guidance on the use of Chemosaturation for patients with ocular melanoma.  The treatment has been approved for use with Special Arrangements for clinical governance, consent, and audit or research. NICE has stated “For patients with metastases in the liver from ocular melanoma, there is

After hearing many positive experiences from our members, we have been supporting a NICE review looking at whether Chemosaturation should be available on the NHS.  There have been delays with this review which has meant some Ocular Melanoma patients are needing to self-fund Chemosaturation.  Until NICE complete their review,  patients cannot access this treatment on

A while ago, we shared a post called Advocacy in Action – Access to Treatment, where we explained more about a treatment called Chemosaturation and how NICE are currently reviewing it to see whether it will be approved. The consultation window closed on the 23rd July and we would like to thank everyone who shared their

Thursday 19th to Saturday 21st November 2020 Each day from 2pm to 7pm Eyes on a Cure: Ocular Melanoma Patient and Caregiver Global Symposium As our conference was postponed this year, we have arranged some amazing talks so that knowledge can still be shared. With you in mind, we have joined with CURE OM in

Our Not a Book, Book Club is now focusing on how patients are supported throughout their experience with this disease. Audrey is working with the Guideline Development Group (GDG) to update the guidelines for hospitals dealing with Ocular Melanoma (primary and metastatic patients).   At the first meeting she brought up the topic of hospitals

When – Every Monday evening at 6.30pm Who – Everyone is welcome How – Join us on Zoom with Meeting ID: 458 544 7975   Password: OcuMel Audrey Woraker hosts an a weekly virtual research group that GENTLY introduces us to a world of science and helps us learn more about om via a drop of research. Audrey