The UKMF is actively involved in NICE consultations regarding new technologies at all stages of the appraisal process, providing feedback on draft scopes and documents, attending workshops and appraisal meetings.  We also put together submissions on new technologies when invited, summarising the treatment landscape of myeloma and the impact of the new technology.  Together with MyelomaUK, we are working towards stream-lined treatment pathways for UK myeloma patients that are practicable, reflect current ‘best practice’ internationally, and take into account disease and patient specific factors. We are keen to involve patients and patient and carer groups in consultation processes, and again, work closely with MyelomaUK to achieve this. The lead for Advocacy is currently Dr Matthew Streetly.


UKMF Advocacy Report for Exec Meeting 8th November 2016

Prepared by M Streetly, Advocacy Lead UKMF


NICE Technology Appraisals

Ongoing Appraisals


Ixazomib (ID807)

  • Relapsed myeloma, 1 -3 prior lines
  • Combination with Lenalidomide / dexamethasone
  • Appraisal restarted following positive EMA recommendation
  • UKMF representatives – GC + KR
  • Evidence submission by 14/12/16


Carfilzomib (ID934)

  • Relapsed myeloma, 1 – 3 prior lines
  • Combination with dexamethasone and lenalidomide / dexamethasone
  • 1st appraisal meeting 12/10/2016
  • UKMF representatives – KR, KY and MS
  • Unfavourable ACD
  • Responses by 30/11/16
  • Next committee meeting 02/2017


Pomalidomide re-appraisal (ID985 / TA338)

  • Relapsed myeloma, Rel / Ref myeloma including prior Len / Btz
  • 1st appraisal meeting 12/10/2016
  • UKMF representatives – NR + MS
  • Estimated completion 04/2017


Lenalidomide 2nd line (Part rev TA171 / ID667)

  • Post 1st line bortezomib
  • 1st appraisal meeting – NICE requested further info from company, next meeting date not available
  • UKMF representatives – KY, SS and MS
  • ACD: Len not approved
  • Closing date for comments 2/12/16


Daratumumab (ID933)

  • Monotherapy when > 3 prior lines of therapy
  • Scoping workshop Manchester 21/3/16
  • Attended by KY and MS
  • UKMF representatives – MS
  • Professional organisation submission by 15/11/16
  • 1st Appraisal meeting 22/2/17


Daratumumab (ID973)

  • Combination with lenalidomide / dexamethasone
  • Participation & Confidentiality form / Expert nomination by 9/11/16
  • Professional organisation submission by 14/12/16
  • 1st Appraisal committee meeting 23/3/17
  • UKMF nominees: MS


Lenalidomide maintenance post autograft (ID475)

  • Informed by NICE that appraisal likely to begin 12/2016
  • Lenalidomide 1st line Transplant non-Eligible
  • Awaiting appraisal dates / further details


Completed / Suspended Appraisals

Panobinostat (ID663)

  • Relapsed myeloma who have received at least 2 prior therapies in combination with bortezomib / dexamethasone
  • NICE approved 26/1/16
  • NHSE commissioned from 26/4/16


Elotuzumab (ID855)

  • Relapsed myeloma, 1 – 3 prior lines
  • Combination with lenalidomide / dexamethasone
  • Suspended 26/4/16 as manufacturer informed NICE they are unable to make a submission


National CDF

  • ?data update
  • CDF administration moved from NHSE to NICE 1/4/16
  • Ongoing review of existing drugs on CDF to decide if stay on CDF list, move to routine commissioning or are delisted
  • Awaiting reappraisals for  bortezomib (Group 3 i.e. last)  for >2nd line and bendamustine (no details)
  • The blueteq web portal continues to be active (although no details on how long)


NHS England CRG Myeloma Treatment Algorithm

  • No further information since mid 2015