The story so far
Kimberley Stubbs, daughter of June Hancock,
Chair and Trustee of the June Hancock Mesothelioma Research Fund
I am not a medic or a researcher – I am simply an ordinary person left devastated by what asbestos did to my family. Nor am I alone in that – many thousands of other families are bereft too. Many more will be in the future.
So, being able to do something positive in the face of such tragedy is a privilege, and a privilege that is afforded to me by some wonderful people that dedicate their time freely and with genuine commitment to change the face of treatments and outcomes for mesothelioma patients. Together, we are the JHMRF –aka “Team Hancock” – and after 19 years we remain determined in our objective to fund high quality peer reviewed mesothelioma research.
I want a cure… BUT?
I want a cure because the pain and suffering human beings endure as a result of exposure to asbestos is cruel, distressing, heartbreaking and intolerable. And for those left behind it stays with you forever. It is haunting.
BUT, and more importantly at this stage of medical knowledge and expertise, I want to quickly see better outcomes and treatments for sufferers. To achieve this, we have to look at new therapies to improve survival as well as innovative treatments for symptom control in our research.
The JHMRF takes pride in often funding the “building blocks” for ongoing and future research, striving to build a long term collaborative pool of mesothelioma researchers and knowledge. Everything has to start somewhere.
To say I am proud of what we have achieved so far is an understatement. We started out after my Mum June Hancock’s death from mesothelioma in1997 with a target of £40,000. 19 years later we have raised in excess of £1.5 m! Very sadly, the vast majority of this money has been raised by those mourning the loss of a family member or friend or work colleague to asbestos disease.
Our Research –The SYSTEMS Study
Is radiotherapy useful for treating pain in mesothelioma? Recipient of the JHMRF’s Brother Peter Fellowship, Dr Nicholas-MacLeod, conducted a multicentre study to find out.
Patients with mesothelioma may suffer from pain, which in some cases can be severe and difficult to treat with painkilling drugs. Radiotherapy has been given for a number of years to attempt to relieve pain but there is very little evidence to support this use. In addition, giving radiotherapy in this situation is complicated by the fact that mesothelioma can affect large areas of the lining of the lung. If radiotherapy is given to the entire lung, this can be associated with side effects that may negate any potential gains in terms of pain control.
The SYSTEMS study was a multicentre study performed in the UK in which patients with mesothelioma received a standard dose of radiotherapy over 5 days to the area of pain. The patients were followed up for 12 weeks and the number of patients who responded to radiotherapy was recorded. The study was open to recruitment between June 2012 and December 2013. In total, 40 patients were recruited from cancer centres in Glasgow, Edinburgh and Sheffield. 14 patients had improvement in their pain 5 weeks after the radiotherapy, with 5 patients having a complete resolution of their pain. No changes in other factors such as breathlessness and quality of life were detected in the course of the study but this could be explained by the relatively small number of participants.
Nicholas commented, “The improvement seen in pain control in this study is encouraging. The SYSTEMS study was the largest study ever to look at radiotherapy for pain control in mesothelioma. The study would not have been possible without the support of the JHMRF and I cannot thank the charity enough for awarding me the Brother Peter Fellowship which enabled me to carry out this work.”
The main results from the study were recently published in the Journal of Thoracic Oncology.
More JHMRF Funded Mesothelioma Research Projects
The last call for research proposals was a very important one for the June Hancock Mesothelioma Research Fund: the fund awarded over £450,000 to support two important new projects and two fellowships.
The award process produced seven excellent applications that were sent out to carefully selected expert reviewers around the world for an assessment of their scientific merit and likely benefit to patients.
The process culminated with a meeting of the JHMRF Scientific Advisory Board, at which all the applications were discussed and the external reviewers’ comments considered. After lengthy discussions two were identified as top choices. Funds available were insufficient to support two projects so it was decided to fund one project – SYSTEMS 2 – fully and the other – an immunotherapy project – for the first year.
SYSTEMS 2 will continue the work started by the Brother Peter Fellowship holder Dr Nick MacLeod in Edinburto study the role of radiotherapy in symptom control. The study comprises a randomised controlled trial where patients with mesothelioma-related pain receive either standard dose radiotherapy or a higher dose of radiotherapy to see if a higher dose can bring about an improvement in pain control. Recruitment for the study is taking place in several centres throughout the UK. The plan is to recruit a sample of 144 participants over two years. It is the first study of its kind in mesothelioma and will hopefully give further insight into the optimal management of pain in this disease.
This work is likely to have the most immediate impact on patient care as advances in radiotherapy technology make it timely to investigate whether this widely available treatment can be used routinely in mesothelioma. Dr MacLeod said “I’m delighted to continue the partnership with the June Hancock Fund and to have the opportunity to take this work forward to the next phase.”
Dr Astero Klabatsa, a molecular biologist (then) based at King’s College London, received a JHMRF project grant for the first year of her immunological study. She investigated the “CAR T-cell” approach that has recently achieved positive results for patients with blood cancers.
She completed her experiments in August 2015. Astero found that the new genes did give the immune cells the ability to attack mesothelioma cells and she also showed that it is feasible to grow the cells in the laboratory to produce a sufficient “dose” of cells that could be used to treat an adult patient. A paper reporting the results of the study is currently under review for publication.
A novel method of treating patients with modified T-cells is currently being tested in head and neck cancer. This study is nearing completion; if the results are promising, funding will be sought for a study in mesothelioma that would deliver immunotherapy directly into the space between the lungs and the pleura where the mesothelioma develops, through an in-dwelling pleural catheter. The study would test whether the modified T-cells boost the patients’ existing immune cells to attack mesothelioma cells and destroy them.
Two fellowships were awarded in 2015: The Stennett Fellowship has supported a doctoral study at the University of Birmingham led by Professor Gary Middleton. His research fellow is Dr Suzanne Graef.
This Fellowship will deliver the first comprehensive analysis of myeloid derived suppressor cells (MDSCs) in mesothelioma and the effects of therapies aimed at targeting them. These cells can influence the body’s immune response to cancer cells. This Fellowship offers a unique training opportunity in translational cancer immunology in a stimulating research environment: Professor Middleton was recently awarded £697,470 by the National Institute of Health Research, Efficacy and Mechanism Evaluation Programme to study the activity of a new drug (Ruxolitinib) in combination with standard chemotherapy for mesothelioma. The JHMRF, in partnership with the University of Greenwich, also funded another a PhD Fellowship led by Professor Adrian Dobbs to take forward work on the total synthesis of anti-cancer agent JBIR-23 that began with the Steve Lee Fellowship. The compound will be refined and tested to confirm its activity against a range of mesothelioma cell types and its potential for development as an effective treatment agent.
The JHMRF is thrilled to be in a position to be able to support these exciting new research projects. Founding Trustee Dr. Kate Hill who manages the research activity of the fund commented “Thanks to the generosity of our donors over £1.5 million has been raised in the 18 years since the fund was founded in June’s memory; these latest awards will take us close to over £1million of that total sum being disbursed to research teams across the UK. We are a small charity but our growing portfolio of research proves that we can make a difference.”
Travel and Educational Grants
The JHMRF awards up to 10 travel grants each year. Applications are considered from researchers and health care professionals to support travel to conferences where applicants will either present papers or speak to a poster exhibit. In certain circumstances, grants may also be awarded for educational purposes; for example, for a study visit to an academic centre of excellence or to attend a course. Applications for co-sponsorship with other organisations or institutions are welcome. Individuals may apply for up to a maximum of £500 in any one year period. These grants have been very well received and appreciated by successful applicants. Follow this link for reports of the conferences attended by JHMRF travel grant holders.
The James Lind Alliance
The JHMRF were delighted to participate in the research priority setting project conducted by the James Lind Alliance. Trustee, Dr Kate Hill was a member of the steering group. The project brought together patients, clinicians and patient organisations in a partnership to investigate the most important research questions for mesothelioma research. Top priorities were submitted to the National Institute for Health Research (NIHR) and a themed call for research proposals followed. More information about the Mesothelioma PSP and copies of key documents including the final report can be found on the James Lind website: http://www.jla.nihr.ac.uk/priority-setting-partnerships/mesothelioma
Action Mesothelioma Day
The JHMRF continues to actively support and take part in this annual national day of awareness raising and support. We had a great turn out to our popular ‘Meet the Experts’ event in 2015 and we repeated that success this year on Friday 1 July 2016 at Weetwood Hall, Leeds.
We Are Making a Difference. Thank you to all who make it possible.
This article was first published in the British Asbestos Newsletter 100th commemorative edition, July 2016.