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  7th November 2018

Prepared by M Streetly, Advocacy Lead UKMF

 

NICE Technology Appraisals

 Ongoing Appraisals

 

Lenalidomide 2ndline (Part rev TA171 / ID667)

  • Post 1stline bortezomib
  • 1stappraisal meeting – NICE requested further info from company, next meeting date not available
  • UKMF representatives – KY, SS and MS
  • ACD: Len not approved 2ndline
  • Comments submitted 2/12/16
  • Celgene resubmitted 3/17
  • Closed 3rd(4th) appraisal meeting 1/2/18
  • Currently suspended
  • NICE have asked company to work with NHSE and NICE Patient Access Scheme Liaison Unit following concerns raised by NHSE regarding the patient access scheme

 

Lenalidomide 1stline Transplant non-Eligible ID474

  • CDA 22/9/17
  • Expert nomination 22/9/17
  • Organisation submission 27/10/17
  • 1stappraisal meeting 1/2/18 (MS / KR)
  • Currently suspended
  • NICE have asked company to work with NHSE and NICE Patient Access Scheme Liaison Unit following concerns raised by NHSE regarding the patient access scheme

 

Daratumumab / bortezomib for relapsed / refractory (ID974)

  • Scope issued and comments returned 10/10/17
  • UKMF nominees: GC / MS
  • 1stappraisal meeting 6/6/18
  • ACD 5/7/18 – Combination not recommended
  • 2ndcommittee meeting 6/11/18
  • Awaiting 2ndACD / FAD

 

Pomalidomide / Bortezomib / dex (ID1358)

  • Scope issued and comments returned 11/7/18
  • Currently suspended
  • NICE have asked company to work with NHSE and NICE Patient Access Scheme Liaison Unit following concerns raised by NHSE regarding the patient access scheme

 

Lenalidomide / bortezomib / dex (ID1449)

  • 1stline therapy
  • Scope issued and comments returned 28/8/18
  • Awaiting committee dates

 

Lenalidomide maintenance post autograft (ID475)

  • Informed by NICE that appraisal likely to begin 12/2016
  • Still awaiting appraisal dates (!)

 

NHS England CRG Myeloma Treatment Algorithm

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

 

NHS England CDF Bendamustine Decommissioning

  • Suggested to remove from CDF
  • Deadline 13/11/18 ?appeal