Blog: Positivity for Patients

8th February 2021


As I write this on World Cancer Day (4.2.21), I felt it important to reflect on the last 12 months and it’s fair to say that nobody could have ever predicted the impact that COVID-19 has had on all our lives. 

Whilst COVID is clearly still having a major impact on us all I do believe there are reasons to feel more hopeful in the weeks and months ahead.  

Such hope has come from the simply amazing excellence of UK science in enabling the COVID vaccines to be available at such a rapid speed.

On a recent BBC interview, Professor Sir John Bell, Regius Chair of Medicine at the University of Oxford, reminded viewers that it would normally take EIGHT years for a vaccine to reach approval stage, yet here we are now with at least 3 vaccines available less than 12 months after the UK was first put into national lockdown. This is a staggering achievement.

This accelerated progress to having the vaccines approved and available has only been possible due to a process and model very similar to the Cure Leukaemia funded national Trials Acceleration Programme (TAP).

This model, in simple terms, is that people are recruited to trial to test the efficacy of a new drug or combination, the results are collated and analysed through a specialist central trials hub with the aim of securing approval for the drug to become standard of care. 

For this to be effective and results delivered at an accelerated rate, you require cohorts of patients with the necessary range of demographic across a large catchment area, a network of research nurses and hospitals to be able to undertake the trial or study and a specialist hub to co-ordinate and analyse the data. This is the model of the Trials Acceleration Programme.

 

“Cure Leukaemia’s funding of the UK Trials Acceleration Programme (TAP) is a game-changer and increases the access for blood cancer patients to potentially transformative new therapies through the delivery of practice informing clinical trials which not only saves lives but also increases investment into this country’s economy.

 

We have seen the urgent importance of clinical trials to combat the COVID-19 virus and we must not lose sight of the transformative role networks like TAP play in connecting blood cancer patients in the UK with critically important clinical trials.”

 

Professor Sir John Bell

Evidence of the importance of the TAP network was seen last June by playing a key role in a new COVID 19 study on acute myeloid leukaemia (AML) patients called PACE. Over 200 patients have now been recruited to this study across 30 UK sites to assess the impact of COVID and other infections on patients with AML. 

On World Cancer Day I was immensely proud that we were able to announce that we will be able to support the opening of 5 new clinical trials in the next 12 months due to our continued commitment to the TAP. 


We know such news will give hope to so many more blood cancer patients across the UK who, without these trials, will sadly have no alternative treatment available to them if standard treatment is now effective.

This commitment to trials continues despite COVID and despite us seeing a £1,500,000 shortfall in fundraising last year with all our major events cancelled.

A future without funding blood cancer trials is something I choose to not think about as without such funding patients like 56-year-old Southampton-based Andy Ayres who benefited from a clinical trial would not be back living his life and aiming to join us on our London 2 Paris bike ride in 2022.  In his words ‘nothing moves forward without clinical trials’

Whilst we play a leading role in the funding of the national TAP network, we are actually still a relatively small charity and we simply cannot afford another financially debilitating year as we did in 2020, however, I truly believe, as we celebrate our 18thyear, there is a lot for us all to look forward to. 

Our Tour de France £1,000,000 event ‘The Tour21’ led by the ever-inspirational Patron and blood cancer survivor Geoff Thomas is sold out and we also have a variety of ways to support the charity via our CL Lifesavers100 Club. Simply by raising £100 or more, in which ever manner you choose, you can join our club safe in the knowledge that the funds raised will help save the lives of blood cancer patients who need our support more than ever. 

I have been associated with the charity since 2006 firstly as a supporter, then a Trustee and for the last 9 years as CEO. What I and the CL team never lose sight of is that our amazing patients want to be surrounded by positivity. 

I always feel so humbled by every patient I meet and in the last 15 years not one of those patients has ever said to me ‘why me?’

They are acutely aware that there is no short-term quick fix with their treatment and they know they have a long journey ahead of them and, equally, also know they have effectively joined a club they really don’t want to be part of. 

I therefore remain in total awe of their bravery, positivity, and determination to take this indiscriminate cruel disease head on with the clear focus on returning to full health as soon as their treatment permits and, in turn, get back to living their lives to the full and to have fun with their friends and family.

The name ‘Cure Leukaemia’ remains ever-powerful from when we were founded in 2003 by Professor Charlie Craddock CBE and patients Graham Silk and Michael Woolley.  

Havin ‘cure’ in our name is an over-riding positive, our campaign ‘we will find a cure’ launched last summer is all about us collectively playing our part on behalf our patients and I know they ALL gain inspiration from knowing that Geoff and his team of 24 other amateur cyclists are taking on such a gruelling challenge as the Tour de France, one week ahead of the professionals.

I also know that so many of our supporters equally draw so much inspiration from our patients too. 

For my personal perspective, when I see Lizzie Dean walking a marathon having relapsed twice, when I see Mark Nicholas cycle London 2 Paris (L2P) post-transplant, when I see Brooke Evans cycle L2P and run a half marathon AND become a haematology nurse a few years after being diagnosed at the age of just 17, when I see 12-year-old boy Harry Price mature into a 6ft fun-loving 17-year-old young man starting college, when I see Jenna Ostrowski cycle L2P 8 months after being in isolation it makes me immensely proud that the funds raised through this amazing patient-focused charity has ultimately helped save their lives. 

Such amazing lifesaving progress is why I do feel so positive about the future and I know despite the ongoing COVID challenges that we all face we can look forward with that same positive mindset I see on an ongoing basis from our patients, nurses, and clinicians across the 12 blood cancer TAP centres.

Finally, an integral part of the charity’s DNA is our focus on the spirit that is found within the #CLFamily. Now, more than ever before, we need to see that family grow and if we can grow as a family, I know we will be able to raise more funds to fund more nurses, to enable more clinical trials to run and as a result provide more hope for blood cancer patients across the UK.


James McLaughlin
Cure Leukaemia CEO

 

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"Cure Leukaemia’s funding of the UK Trials Acceleration Programme (TAP) is a game-changer and increases the access for blood cancer patients to potentially transformative new therapies."

Sir John Bell
"Cure Leukaemia’s funding of the UK Trials Acceleration Programme (TAP) is a game-changer and increases the access for blood cancer patients to potentially transformative new therapies."

Sir John Bell