قصة ديبرا

Once I had settled into my treatment and scans/blood tests had settled into a manageable pattern I realised that the treatment choices in the UK were quite different to other countries including the US. I had joined the US ALK Positive FB group once I knew I was ALK+ so benefitted from all the support I received in the early days. I noticed a few people from the UK had posted about getting progression, however many of the suggestions put forward by members of the FB group weren’t appropriate for the UK as we have different guidelines. We aren’t allowed to drive with brain mets in the UK and this differed from many countries as well. Finally, I also saw lots of post about people meeting up at Lung Cancer conferences which I thought was amazing but again not something we could do in the UK as they don’t allow patients to attend such events.

 

So that’s when I decided, if we couldn’t attend UK events, we would have our own. I put a message on the US fb page asking if any people from the UK wanted to meet up. There were 54 people registered in the UK and I tagged all of them in my post. We eventually came up with the date of July 18th where 18 of us met in London.

 

I asked my oncologist, who happens to be one of the leading ALK experts in the UK, if he would come and speak to the group and he agreed. He even left a birthday party he was attending to get across London to speak to us. He had said he wouldn’t have long so I allocated 30mins for him to talk and 15mins for questions. On the day, I practically had to drag him away after an hour and a half so he could get back to his party. He told us we should keep meeting as there was a real need for patient advocates for ALK-positive LC.

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So, l went home and set up our fb page and invited all 54 people to join the UK group as well. I believe we need both groups as they provide different support, for example the UK group can advise on what treatments are available and in what order, what scans people should be having and the frequency, the treatments available for bone mets, blood clots and very importantly advocate for routine brain MRIs. The US group is brilliant at sharing info on side effects of the different treatments and the latest research and trials taking place. The US has and continues to do the most amazing job of fundraising and driving new research into ALK which hopefully patients will benefit from going forward.

 

We formed the charity in December 2018 as this gave us a better opportunity to formally engage with pharmaceutical companies and NHS organisations. The charity has been involved with 3 TKI approvals for UK patients and we have been recognised for the quality of our submissions both by clinicians and NICE.

 

Going forward, I want to see every ALK-positive patient receive the best care irrespective of which hospital they attend. I want to ensure every patient receives CT scans every 3 months and brain MRIs every 6 months or 3 monthly if they already have brain mets. It would be great if everyone could also access PET scans regularly, however this is aspirational due to the structure of healthcare costs and reimbursement in the UK.

 

I also want to ensure anyone who develops a blood clot stays on blood thinning treatment for the rest of their life (to significantly reduce their likelihood of developing further clots).

 

Currently, the UK doesn’t conduct any trials for ALK+ LC. However, I believe we can significantly improve our overall survival by ensuring all the above is implemented whilst we wait for new treatments to be approved. The charity is currently working with a pharmaceutical company on a piece of work looking at brain mets and their impact on patients and the families. We will be publishing this work early next year which will enable us to continue to advocate for routine brain MRIs for all ALK+ patients.

 

We are also working on a set of resources to support patients’ mental health in collaboration with another pharma company as we recognise the enormous toll on mental health having cancer causes.

 

We will also continue to support future treatment applications for NICE approval. Whilst many of our members thank the charity for all the work it does.

 

I know that many people don’t know we exist and so go through their diagnosis, treatment and living with ALK+ LC feeling isolated and alone. I hope one day every Oncologist across the UK will refer all their ALK+ patients to us with their endorsement so no-one had to go through this feeling unsupported and alone.

 

Earlier this year, we worked with 2 other LC charities to develop a campaign to highlight nonsmoking LC amongst GPs to support earlier diagnosis. An advertising agency and publications agency worked with us pro bono (to the value of about £400k) to develop the campaign ‘See Through the Symptoms’ highlight the symptoms of LC amongst nonsmokers. The world-famous photographer Rankin, gave his time freely to develop the visuals for the campaign so 4 of our members got the opportunity to meet him and have their photograph taken by him - what a silver lining to their ALK+ diagnosis! We plan on relaunching this again for Lung Cancer Awareness Month later this year.

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I am very proud of the work the charity does and the fact we now have over 400 members making us the largest group of ALK+ patients outside the US and we didn’t even exist 3 years ago.

 

We now have exciting plans to take the charity to the next level.