Advocacy


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 July 2020

Prepared by M Streetly, Advocacy Lead UKMF

Ongoing Appraisals

Isatuximab /pomalidomide. Dex (ID1477)

  • Rel / Refr myeloma
  • In combination with pomalidomide / dex
  • UKMF rep: GC / NR
  • Initial recommendation: not supported
  • Response sent

Carfilzomib / daratumumab / dex (ID270)

  • Rescheduled pending data
  • Estimated to start May 2021

Daratumumab (ID1510)

  • 1st line, transplant eligible
  • In combination with VTD
  • UKMF rep: GC
  • Responses to scope by 9/6/20

Carfilzomib (Part rev TA457)

  • Relapsed myeloma
  • In combination with lenalidomide / dex  or dex
  • UKMF rep: KR
  • Comments submitted 30/1/19
  • Recommended expanded recommendation: across 2nd line
  • Comments 2/6/20
  • NB appraisal outcome not published for Car / dex, Car len dex appraisal on 7th July 2020- Outcome awaited

Selinexor (ID1535)

  • Rel/Refr myeloma
  • In combination with Dex
  • UKMF reps: NR/JA
  • Scope comments returned 6/2/19
  • Appraisal on hold

Lenalidomide maintenance post autograft (ID475)

  • UKMF reps: KR / GP
  • Comments submitted 16/1/20
  • Appraisal committee date 13/8/20

Suspended / terminated

Ixazomib / lenalidomide / dexamethasone (ID1170)

  • Appraisal suspended (12/6/20)
  • Company not submitting a marketing authorisation

Elotuzumab for Untreated myeloma (ID966)

  • Suspended
  • Company withdrew as Eloquent-1 did not reach primary endpoint

NHS England CRG Myeloma Treatment Algorithm

  • Myeloma treatment day June 2018
  • Invitees: GC, JB, KR, MS, MC
  • Awaiting consultation draft (was due 09/2018)

National Regimen specific consent programme

  • Sponsored by CRUK
  • UKMF asked to provide expertise to review consent documents
    • UKMF reps: MS, NR, JA

No progress