Groundbreaking Treatment for Metastatic Uveal Melanoma Approved for use in the UK
Ocular Melanoma UK (OMUK), formerly known as OcuMel UK, celebrates the landmark announcement that Tebentafusp, a pioneering treatment for metastatic uveal melanoma, is now available to patients in the UK. This approval represents a historic breakthrough, offering renewed hope to people living with this rare and aggressive cancer.
For the first time, patients in the UK with metastatic uveal melanoma who are HLA-A*02:01-positive, will have access to a treatment that not only extends survival but also maintains quality of life.
The approval of Tebentafusp in the UK, offers not only a treatment option but also much-needed hope to patients and their families. Being diagnosed with a rare cancer like uveal melanoma can feel isolating, and Ocular Melanoma UK understands how challenging this can be. We encourage anyone impacted by this diagnosis to reach out to our helpline (0300 790 0512) or join one of our community events, either online or in person.
Connecting with others with shared lived experiences can make this diagnosis feel a little less rare.
Jo Gumbs, CEO and Founder of Ocular Melanoma UK, expressed her excitement:
“Today’s announcement that Tebentafusp will be available for people with metastatic uveal melanoma is simply incredible. This rare and devastating cancer has lacked effective treatment options for too long, so this approval is a monumental step forward.
We are especially proud to have represented our patient community in the appraisal process. This recommendation highlights the power of collaboration between patients, advocates, the pharmaceutical company and medical experts treating people with this rare cancer.
We look forward to many such improvements in the future, so every patient has access to the treatments they need.
We would like to especially thank Victoria and Helen for being our patient representatives in this NICE review and everyone who has contributed to this monumental milestone.
We remain committed to advancing care and support for people with ocular melanoma, but we will take time to acknowledge that today is an excellent day.
Victoria, a patient who participated in the Tebentafusp trial, shared how the treatment transformed her life:
“When I was diagnosed with ocular melanoma, I went to my first oncology appointment to be told many immunotherapies used on this cancer are ‘largely ineffectual.’ It was like being hit in the stomach. Luckily, I was referred for the drug trial for Tebentafusp—or IMCgp100 as it was then.
I had no idea what to expect but was thrilled to discover that, after the initial few weeks, there are very few side effects, and I can live—and live well—with incurable cancer. I have been able to work, travel, and continue to experience this wonderful, crazy life.
I am thrilled that others will now be able to access this treatment, as there are so few treatments available. I’ve met other patients on this journey, and it’s been awful to know they couldn’t access the one immunotherapy treatment that could help them, until today. It was soul-destroying for so many people. This approval gives us hope, which is precious for patients with metastatic uveal
melanoma.
I am proud to have been a patient representative for Ocular Melanoma UK and to have played a role in people getting access to a medication that may prolong their lives without impacting the quality as much as some other therapies.”
Megan, another patient who received Tebentafusp, also shared her perspective:
“I started Tebentafusp when I was 29 years old. This kept me alive for more than two years, which is huge for someone with metastatic uveal melanoma. Like others, I experienced some side effects in the early weeks but felt incredibly well during treatment. I would love to see a time when people with uveal melanoma can receive the treatments they need, as we all need better treatment options.”
Megan’s partner, Dimi, highlighted the importance of access to effective treatments for patients and their loved ones:
“I felt incredibly relieved and hopeful knowing that Megan had access to Tebentafusp. We were able to make precious memories together due to her having minimal side effects. I am grateful for the access to this treatment and the quality of life it has granted us. I believe everyone who needs it should have access to it and be given the same opportunity.”
About Metastatic Uveal Melanoma
Uveal melanoma is a rare and serious type of eye cancer. While it’s the most common eye cancer in adults, it is still very uncommon overall. Sadly, up to half of people with uveal melanoma will go on to develop cancer that spreads to other parts of the body (metastatic disease). Advanced uveal melanoma was hard to treat and usually had a poor outlook.
HLA-A02:01 is a specific genetic marker that some people have, and it plays a role in how the immune system works. If you’re “HLA-A02:01 positive,” it means you have this marker, which is needed for certain treatments, like KIMMTRAK (Tebentafusp), to work effectively. Around 40-50% of people in the UK have this marker, so not everyone with uveal melanoma will be able to use this
treatment.
If you are not sure about your HLA status, your medical team can arrange a test to find out.
About Ocular Melanoma UK
Ocular Melanoma UK, formerly known as OcuMel UK, is a leading charity dedicated to supporting people affected by ocular melanoma across the UK. Through advocacy, expert collaboration, and support services, OMUK aims to improve the lives of patients and loved ones and ensure that everyone impacted by this rare cancer has access to the care and treatments they need.
For media enquiries please contact:
Jo Gumbs, CEO & Founder