We were privileged to be recently invited to the British Lung Foundation (BLF) mesothelioma research up-date to members of its Mesothelioma Patron Scheme.
Hosted by the BLF’s CEO Dr Penny Woods, we heard news from Nathan Bennett, Policy and Public Affairs Officer, Ian Jarrold, Head of Research, and the incredible mesothelioma survivor, advocate and author, Mavis Nye.
After years of underfunding with promising research held back and the missed opportunity in the form of the Mesothelioma Act 2014, it was heartening to hear from Nathan Bennett that there is solid cross-party support in Westminster for a more sustainable research funding solution. Nathan told us that behind the scenes there is a lot of negotiation and lobbying happening across both the Houses of Parliament and government departments.
The 2014 Act is up for review in 2018. Given that the Diffuse Mesothelioma Payment Scheme seems to be costing less than initially expected, there is interest in the House of Lords to revisit the levy on insurance companies that fund the scheme, to see if an addition could be made to it to fund research. If just one per cent of the levy on insurers was earmarked for mesothelioma research it would be a sustainable fund of £1.5 million a year to build on.
Ian Jarrold explained that in the past, attitudes towards research into mesothelioma were fairly nihilistic. It was thought of as a terminal disease that would disappear in line with the disease’s 13 to 70-year development in sufferers and the UK’s asbestos ban, but the number of deaths from mesothelioma continues rise. The death rate is not likely to peak until some time during the next decade, but we do not know how fast it will fall. Also, many countries have not banned asbestos and are still mining and using the deadly material. It will be a huge global problem going into the next century.
Ian said: “This is a disease that matters and we can do something about it. The positive news is that BLF spending is going up and 2016-2017 sees our biggest ever spend on mesothelioma research. We’ve seen a real step-change in the allocation of funding and the quality of research. There are researchers interested all over the UK and they are collaborating. It is hugely satisfying to see the change and lots and lots of activity going on.”
We were given some research highlights that were genuinely exciting and startling in their diversity. From the development and expansion of the ‘Mesobank UK’ for storing mesothelioma tissue, blood, and clinical data for researchers; to harnessing the immune system’s white blood cells; or genetically modified cell therapy; and testing a new drug to increase effectiveness of radiotherapy. It really is sci-fi becoming sci-fact in the search for effective treatments for mesothelioma.
Ian said: “We now have the key aim of providing a bright future for mesothelioma research across the coming decades. Research is a long game, takes time and needs sustainable funding to deliver patient benefit. With partners and patrons, like you, we hope to get there.”
Mavis Nye is proof that progress is being made and a beacon of hope for mesothelioma sufferers. Mavis was diagnosed in 2009 with mesothelioma and given three months to live. Her story is harrowing and inspiring in equal measures. She tells it much better than we ever can and we thoroughly recommend you read her blog and follow her on social media.
Through sheer determination, courage and a little luck, Mavis managed to find and get on to a clinical trial in 2014 for a new immunotherapy drug known as Keytruda, which showed promise in treating a variety of cancers. Two years later Mavis is the first mesothelioma patient to officially be in a state of remission after being treated with the trial drug.
Mavis said: “I was told that I had no active mesothelioma in my lungs. I couldn’t take that in!”
The drug does not work for everyone and Mavis says that there is no clear reason “why it worked for me”, but it gives mesothelioma sufferers hope.
After hearing her inspiring and incredible story, Mavis did have a warning. She said: “You’re not going to see mesothelioma death rates peak and drop.” People are still being exposed to asbestos. The next generation of builders, joiners, plumbers, electricians and labourers are still not wearing the right equipment and have the same dismissive attitude towards the exposure to the deadly fibres. She is also concerned for teachers and school children exposed to asbestos within the majority of our UK’s schools and colleges.
Victoria Roberts, an industrial disease lawyer specialising in asbestos for Birchall Blackburn Law, says: “It’s strange to leave a meeting about mesothelioma with a sense of hope, but that’s what happened. To hear about the work that the BLF is doing to push mesothelioma research and find funding is exciting and heartening – and we’re so proud to play our part as a Patron.
“As Mavis and Ian warned us, there is a long way to go to secure sustainable funding for mesothelioma research, finding more treatments, educating people about the dangers of asbestos and ridding the UK of asbestos for good, but we now know that there are smart and incredible people working to do all that. We can’t wait for the next update from the BLF team!”