Going on behind the scenes:
Getting sorted
So much has been achieved in the last year: becoming a charity, creating and launching the hugely successful advertising campaign See Through The Symptoms, representing the patient’s voice in a wide variety of settings, continuing to increase our position as the group to include in all things EGFR, to name but a few.
We have sadly also experienced a 50% change in our Board of Trustees. The emphasis in this first quarter has of necessity been to re-group and re-build as we plan the focus and activity for this year. Thank you to all our members for your unwavering support of us and each other. This is the essence of our group and you will be seeing our plans unfold over the next weeks.
3 NICE submissions
As many of you know we work closely with NICE as Patient Experts. This month we have completed three written submissions as part of their process to appraise new treatments for use in the NHS. It is a very exciting time for lung cancer. Usually, we would expect to be involved in about 6 appraisals a year, so 3 in the first months of the year is unprecedented! The next phase of the appraisals will be Committee meetings in the summer and we would expect to hear the outcomes from the appraisals in late summer. Check out the treatments being appraised:
Mobocertinib: a 2nd line TKI for treating Exon 20 insertion patients following 1st line platinum-based chemotherapy.
Amivantamab: a 2nd line biospecific antibody therapy for treating Exon 20 insertion patients following 1st line platinum-based chemotherapy.
Aumolertinib: a 1st line TKI.
Building links across the pond
We are always keen to put forward the patient’s voice and often call upon input from our members and at times reach out to other patient groups. This month we have had the opportunity to work with patients from the Exon 20 Group based in the US. Only 1-2% of EGFR positive patients have Exon 20 insertion, so finding enough patients to talk to about their experience and treatment was proving difficult. Marcia Horn the CEO of the Exon 20 Group very helpfully involved her members in a lively zoom session. Insight was gained, ideas shared and a connection made. Thank you to the Exon 20 Group!
New Treasurer
We are thrilled to announce that Steve MacDonald was appointed as Treasurer for the charity and will commence working with the Trustees on 25th March. Huge welcome to the team Steve and looking forward to great things in 2022 and beyond.