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 4th November 2019

Prepared by M Streetly, Advocacy Lead UKMF

Approved NICE Technology Appraisals

Daratumumab / bortezomib for relapsed / refractory (TA573 / ID974)

  • UKMF rep: MS / GJ
  • Approved 2nd line therapy 04/2019

 Lenalidomide 2nd line (TA586 / Part rev TA171)

  • UKMF rep MS / SS / KY
  • Post 1st line bortezomib
  • Approved 06/2019

 Lenalidomide 1st line Transplant non-Eligible (TA587 / ID474)

  • UKMF rep MS / KR)
  • Approved 06/2019

Ongoing Appraisals

Isatuximab (ID1477)

  • Rel / Refr myeloma
  • In combination with pomalidomide / dex
  • UKMF rep: MS  /GC
  • Scoping comments 15/3/19
  • Appraisal meeting planned 05/2020

Daratumumab (ID1510)

  • 1st line, transplant eligible
  • In combination with VTD
  • UKMF rep: GC
  • Scope comments returned 6/2/19
  • Await Appraisal committee dates

Carfilzomib (Part rev TA457)

  • 3rd line
  • In combination with lenalidomide / dex
  • Comments submitted 30/1/19
  • Awaiting appraisal committee dates

Selinexor (ID1535)

  • Rel/Refr myeloma
  • In combination with Dex
  • UKMF reps: NR/JA
  • Scope comments returned 6/2/19
  • Appraisal planned to start 02/2020

Lenalidomide maintenance post autograft (ID475)

  • Awaiting appraisal committee dates

Suspended / terminated

Lenalidomide / bortezomib / dex (ID1449)

  • 1st line therapy
  • Scope issued and comments returned 28/8/18
  • UKMF rep: MS
  • Organisation submission 12/3/19
  • Appraisal terminated: Celgene did not submit evidence

Pomalidomide / Bortezomib / dex (ID1358)

  • Scope issued and comments returned 11/7/18
  • IKMF rep: MS
  • Appraisal terminated: Celgene did not submit evidence

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