Myeloma patients in England and Wales will now be able to access the new myeloma treatment, ixazomib (Ninlaro®) on the NHS, after the National Institute for Health and Care Excellence (NICE) approved it for use, through the Cancer Drugs Fund (CDF).
Ixazomib is a new proteasome inhibitor, similar to bortezomib (Velcade®), and is the first oral drug of its kind. (You can read more about ixazomib in our Horizons Infosheet.)
The NICE decision means that ixazomib is now recommended for use in combination with lenalidomide (Revlimid®) and dexamethasone for myeloma patients who have received two or three prior treatments.
Myeloma UK Chief Executive, Rosemarie Finley said, “This is a landmark day for myeloma patients and their families. Ixazomib is a much-needed effective treatment option for patients whose myeloma has come back.
“As the first oral treatment of its kind, it will be hugely beneficial for so many patients: from frail elderly people who find it difficult to travel for hospital appointments, to younger patients who have work and family commitments.
“We commend Takeda, NICE and NHS England for their efforts to explore every option for approval.
“I also want to thank all the patients who supported us in making a case for approval by sharing their experiences so that decision makers understand what access to ixazomib means for patients and their families.”
John Ellwood is a former headteacher and myeloma patient who received ixazomib, lenalidomide and dexamethasone for 8 months in 2016. The treatment brought his paraproteins down to zero so that he was fit enough to have a donor stem cell transplant. John remains in remission. John says:
“For me, ixazomib was a gift of time. When faced with a diagnosis of cancer, most patients will say that their most valuable resource is time, because the prospect of having fewer years to live makes the remaining time suddenly more precious.
“Ixazomib is a gift of time in two ways. Firstly, it can extend life expectancy; but, perhaps more importantly, as an oral treatment, it means patients need not spend two days a week travelling to hospital and receiving their medication; instead, ixazomib is self-administered at home, with minimal side effects, so those two days are returned to the patient to use as they want. This is a huge morale booster for patient and carer alike.”
The ixazomib, lenalidomide and dexamethasone combination will be available via the Cancer Drugs Fund (CDF) from 19 December 2017.
This decision only applies to myeloma patients living in England and Wales. Ixazomib is not currently available in Scotland or Northern Ireland. Takeda are currently considering the next steps in making ixazomib available in Scotland. Myeloma UK will keep in touch with the company on these plans. In Northern Ireland the Department of Health, Social Services and Public Safety (DHSPSS) usually reviews NICE guidance within three months of publication.
The approval of ixazomib by NICE means that there is no need for the Named Patient Programme (NPP) to continue to run in England and Wales since patients can access the treatment on the NHS. For Scotland and Northern Ireland, which are not covered by the NICE decision, the NPP will run until 31 December and doctors can start new patients on ixazomib until that time.
Under the Cancer Drugs Fund (CDF), NICE are able to issue a “conditional yes” to treatments which are promising but where there is still uncertainty about their clinical effectiveness. Treatments are approved under the CDF subject to an agreement between the pharmaceutical company and NHS England (called a Managed Access Agreement). Under this agreement, there is a two year period where more data on the effectiveness of the treatment is collected. NICE then make a final decision as to whether it should be approved for routine use.
The (CDF) is a government fund (currently £340m for 2017-2018) which aims to:
- Provide patients with faster access to the most promising new cancer treatments
- Help ensure more value for money for taxpayers
- Offer pharmaceutical companies a new fast-track route to NHS funding
Myeloma UK worked with NICE, Takeda, doctors and patients to make sure the patient voice was heard throughout the appraisal process. We did this by submitting written evidence which set out what the approval of ixazomib would mean for patients and by participating in two NICE meetings where, alongside patients and myeloma doctors, we described the positive impact which ixazomib would have on the lives of patients and family members.
We are very grateful for the support of patients, carers and family members who tell us about their experience of myeloma treatments so that we can ensure that drug approval bodies have the best possible evidence for their decisions.