The second forum meeting of ALK Positive UK took place at the Malmaison Hotel in Manchester Saturday 13th October 2018.
The meeting was chaired by Debra Montague.
Introductions. Big welcome to new attendee Alma O’Connell who came from Jersey and is 1 of 3 ALK+ patients there.
Progress Report Discussed (Pre-read):
Need to confirm a Clinical Sponsor.
Dr Sanjay Popat to be approached regarding this. He is president of BTOG so would be ideal.
Future options could be to have a board of clinical sponsors. Sally Hayton noted that Dr Summers from the Christie is involved with ALK committee so could be a good option for this board.
Amanda Sands has liaised with medical director of Roche on behalf of the group as to why Alectinib was only approved as 1st line therapy. His reply implied that it was out of their hands. As we understand it they didn’t apply for 2nd or 3rd line NICE approval.
Brigatinib status with NICE.
To communicate with Takeda Medical Director and/or NICE to see what next stages are with regards to NICE’s decision on not using Brigatinib as second line therapy.
Discussed writing a collaborative response to NICE to contribute to consultation process, if appropriate, once reply from Takeda received.
Discussed a way of us reaching those that are not computer literate or choose not to use the internet for the purposes of researching their disease. Agreed that we should have a mobile phone number that can be put on patient literature, so they can contact us. We can then send them some information and communicate with them via post, email or WhatsApp.
To include provision of a mobile phone in the Macmillan bid for funding.
Also need to set up Instagram account to promote the group to a younger audience.
Agreed that we need to harness the power of social media to raise awareness. DM emphasised importance of publicising images of ALK positives doing everyday things like going to work, shopping etc. This kind of social media activity has a real impact. For example Sally Hayton’s picture on Twitter reached over 1500 impressions. The use of # in social media leads to more impressions and awareness. Examples include #lungcancerwarenessmonth #removethestigma #nonsmokersgetcancertoo
To encourage members to send in photos with the ALK logo to share on social media.
This is something we encourage all ALK+ members to get involved with to help raise our profile. A post will go on the FB page highlighting this importance and example of how to get more involved.
It was noted that all meetings (even a shared coffee and chat with 2 members) is a meeting that happen between ALK+ members and should be noted and reported by either posting a picture on FB or emailing so that we can keep a track of numbers which can be very beneficial when it comes to receiving future funding.
A FB post will go out highlighting importance of communicating any meetings as a result of the group.
DM showed us progress on this far. Will have a link to the worldwide site. Live twitter feed, patients’ images and stories.
Need to request content
Pictures of survivors with first names and when diagnosed.
Patients stories of longer-term survivors to provide hope.
Request all members to appropriately contribute to the website content
Discussed the benefit of a separate carers’ section/forum on website or Whatsapp group Agreed to set up a carers Whatsapp group and review after 3 months.
Terms of Reference:
The draft ToR circulated prior to the meeting were discussed. Agreed subject to “liaise” added to the sentence “influence decision makers”
We will allow members of the group to be patients, carers and certain honorary members who may consist of medical professionals or other individuals with a vested interest in helping our cause. UK ALK+ is different to the UK ALK+ Facebook Group will remain CLOSED only to patients and carers.
The proposed organisational structure distributed prior to the meeting was discussed and agreed:
Chairman – To ensure the management committee functions properly. To plan and run meetings ensuring matters are dealt with in an orderly, efficient matter. To bring impartiality and objectivity to meetings and decision making. To plan for recruitment and renewal of Management Committee. Debra Montague appointed.
Secretary/Treasurer – To ensure that meetings are effectively organised; minute taking, maintain register of members, record all income and expenditure, present accounts to board and at AGM, ensure compliance of ToR and charity legislation. Graham Lavender appointed.
Communications Lead – Utilise multimedia channels to identify and attract UK ALK patients and raise awareness amongst appropriate HCP’s on the UK ALK + Advocacy Group. Rebecca Stebbings appointed.
Medical Advocacy Lead – To influence decision makers, e.g. NICE, NHS, DVLA and raise awareness of ALK, particularly amongst the medical profession so as to promote the best treatment for patients. Amanda Sands appointed.
Fundraising Lead – To liaise with relevant organisations, in particular RCLCF and pharma’s and trusts to raise fund for the purposes of the UK ALK GROUP. No nominations received for this role. Any member interested in this role should inform the chairman.
Other non-board voluntary roles assigned:
Doreen McGinely will take on the role Social Secretary for the South.
Sally Hayton will take on the role of Social Secretary for the North.
Penny Brohn Centre in Bristol a charity that offers feel good workshops for patients. Suranne Jones endorses this charity.
Investigate opportunities for a group ALK+ patients to attend.
National ALK Database:
Dr Fabio Gomes (firstname.lastname@example.org), Clinical Research Fellow at The Christie Manchester, spoke giving us an overview of the “National ALK Database” which is a national collaborative network and database. Dr Fabio Gomes and Dr Summers from the Christie lead the project with collaboration from Dr Sanjay Popat and a consultant from Ipswich Hospital.
It has currently collected data of 201 clinical cases in the UK. This information has come from 23 trusts in England. There are many more patients and centres to gather data from.
This project aims to address the fact that there is little ALK+ specific data in the UK. SACT (Systemic Anti-Cancer Therapy Dataset) from Public Health England and National Lung Cancer Audit from Royal College of Physicians do NOT hold ALK specific data.
Not everyone treats ALK+ in the same way. Different sequence of treatments, smaller treatment centres have difficult accessing trials. The data will be used to analyse treatment patterns and outcomes. Data on the sequencing of treatments will lead to improvement in survival and some real life data on efficacy and toxicity. ALK+ variants will also be taken into account.
MDTs take place for patients but these are difficult when nobody on MDT’s treat ALK+. A collaborative database of information could help address this issue. This data could also be used to influence NICE.
Dr FG sees patient involvement at hugely important and thinks it can have a big impact in terms of ideas, co-authoring, influencing strategic direction, communicating results and identifying priorities and unmet needs.
We agreed that we could share anonymised data of our members treatment centres/oncologists/CNS with Dr FG. He can also share contact detail of the treatment centres he has on board with us so we can make sure they have our literature to give to their ALK+ patients.
Agreed to follow up with Dr FG to get information from him.
Need to send out Survey Monkey to members to gather information for him.
Other interesting points made by Dr FG and Lorraine Dallas:
Re-biopsy is not the standard of care in UK. Is sometimes done through research funding/clinical trials.
Early stage cancer patients are not tested for mutations.
85% of Lung cancer cases in UK are NSCLC, 5% of these are ALK +. Appox 1955 ALK+ patients.
Reasons people may not be detected as ALK+
Too old/frail/sick for the benefits of a biopsy to outweigh the risks and it involves.
Some patients by the time they are diagnosed are so advanced that they die shortly after.
Biopsy fails to get enough tissue for testing.
Dr FG hopes and feels that we are at a stage in the UK that all relevant patients are offered driver mutation testing. The data he has suggests that about 10 patients were put on chemotherapy first line even when Crizotinib was available but he doesn’t know the reason for this.
Amanda Sands asked how are ALK+ coded/recognised within NHS data. Dr FG doesn’t think they are, although they may be able to be tracked through the medications they are on. Can this/should this be addressed is something to consider.
Lorraine Dallas – Director of Prevention, Information & Support at Roy Castle Lung Cancer Foundation spoke to us.
3 areas involve work around prevention, research funding and information & support. For the latter they work via CNS’s and facilitate about 50 support groups across the UK.
Work closely with NHS and pharma.
Lobby for improved standards of diagnosis.
Engage with assessments of new drugs by NICE, Cancer Drugs Fund and SMC
Work to raise profile of LC and improve standard such as access to audit data from National Lung Cancer Audit.
Issues – Cancer Drugs Fund is designed to fund new drugs for 2 years while real world data is gathered about the drug. This is NOT guaranteed in Northern Ireland.
EAMS – Expanded Access to Medicines becomes available when EU have approved a drug. However once submitted for approval by NICE then EAMS access is withdrawn.
DVLA – engaging with them is on the agenda for Roy Castle to address potentially outdated rules around brain mets. Macmillan are not wanting to engage with DVLA on this.
As established we need to build a body of evidence as to how the DVLA decisions around driving conflict with fitness to drive for ALK+ patients.
Agreed first to establish exactly how the DVLA established this guidance and if it is out of date and if we have a case to challenge it.
We need to find out what the DVLA’s exact reasoning is for the blanket ban to be able to tackle this issue.
Roy Castle see further areas of development to be:
Testing & retesting of mutations.
Super specialist centres
Next Generation Sequencing
Developing standard of care when it comes to sequence of treatments.
New medicines and treatments, advancing support, educating health care professionals, treating more LC at early stage, developing the research agenda, genetic profiling and prophylactic management.
Roy Castle’s aim is for 5 year survival of LC to reach 25% by 2025.
LD was very complimentary about our group and said we are having an impact in the LC world.
Breast cancer treatment was transformed through early screening. The patient voice was very important in this transformation. Celebrity endorsement can be helpful in raising profile.
Investigate potential for using celebrity endorsements.
MP James Brokenshire who received surgery for LC and has talked publicly about importance of seeking early diagnosis.
Robert Peston (wife died of LC) and has talked about under-funding on twitter.
Leah Bracknell EGFR patient.
Agreed to identify a celebrity to endorse our organisation.
ALK+ UK Charity Status:
The report on seeking charitable status circulated prior to the meeting was discussed.
It was agreed that we will form a charity. This will make future funding much easier and help to raise our profile.
This would be the FIRST genetic mutation Lung Cancer charity to be set up in the UK.
Because this has been agreed and we have ToR, we can now operate as a Charitable Organisation whilst seeking formal registration.
We are currently applying for start-up funding from Macmillan. We may get a donation from Takeda and we will be setting up a JustGiving/GoFundMe page to enable donations from our members and fundraising events. This can be done once we have set up a bank account.
Agreed to set up a donation page in time for Lung Cancer Awareness Month in November.
Initially, money donated or raised will go towards printing costs for materials, website etc to grow our member base and advocacy work (i.e. travel to BTOG and other medical conferences). The growth of the FB community is essential for us to:
Attract more members/supporters of our charity.
Attract volunteers/ambassadors who can help us with social media and real-world advocacy and awareness raising.
Attract board members as the charity evolves.
It was noted that we will not need much money to operate but a certain income is needed to sustain the current level of activity.
Agreed that a Facebook communication to go out regarding details of JustGiving/GoFundMe page once set up. Requests for help with specific advocacy/raising awareness tasks.
November lung cancer awareness month “Walk for ALK” campaign and “One LC fact a day” campaign.
A financial statement circulated prior to meeting was discussed.
A big thank you to DMc who has given us a donation of £350 which she received from attending an ALK+ market research workshop.
Also a huge thank you to DM and GL for all the money and time they have put in to date which has enabled us to achieve what we have so far.
An account is being opened with Natwest and the bank requires the passing of a resolution concerning card signatories – attached to these minutes as an appendix.
The resolution was approved.