NICE says no to Tebentafusp (Tebe/Kimmtrak)
Unfortunately, today 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 treatment through a clinical trial or already enrolled on the Early Access Programme, as they will continue receiving Tebentafusp for as long as their doctor feels it is appropriate.
For people in Scotland, the funding route differs, so please speak to your oncology team for the most appropriate approach.
NICE has the difficult role of considering which treatments should be made available to NHS patients. After carefully considering the available evidence, NICE acknowledged the impact of this distressing disease on patients, but it found that Tebentafusp was too expensive for the benefit it provided, and they felt it did not represent good value for money for the NHS.
Jo Gumbs, CEO of OcuMel UK, said, “This is devastating news for the ocular melanoma community whose lives depend on the urgent availability of effective treatments. This incredibly rare cancer makes it difficult to demonstrate the full potential of this treatment and meet the current cost-effectiveness requirements.
We urge NICE to review their process and parameters for the very rare cancers, as the current process to review life-changing treatments for people with rare cancers needs urgent attention.
As the patient organisation representing our community, we have already begun to look at all options for where we go next. We have work to do, and we will continue advocating for effective treatments to be made available. We work closely with the wider rare cancer community so people with rare cancers are not disadvantaged. We will continue to make sure everyone is aware of all options open to them and, importantly, that decision-makers understand the current processes are not suitable for rare communities.
Although this is not the decision we wanted, other promising trials are emerging, and thankfully our conference on the 22nd of September in Reading will allow everyone to hear from leading experts on all the latest developments. We urge anyone affected by this cancer to consider joining us, learning more, and connecting with others. As rare as this cancer is, people are not alone, and we have a special community that can help people through.”
We will keep you updated on any developments, and in the meantime, if you have any questions, please contact our Helpline on 0300 790 0512 or email us using helpline@omuk.info.
For more information about other upcoming/ongoing clinical trials, please see this link.
You can find more information about our upcoming conference on our website, www.ocumeluk.org/events.