Spring 2016 NEWSLETTER - ADSSSPRING NEWSLETTER 2016 Asbestos Disease Support Society Date Claimers...
Transcript of Spring 2016 NEWSLETTER - ADSSSPRING NEWSLETTER 2016 Asbestos Disease Support Society Date Claimers...
Asbestos Disease Support Society
16 Campbell Street, Bowen Hills, QLD 4006
PO Box 280, Spring Hill, QLD 4004
Phone: 1800 776 412
Spring 2016 NEWSLETTER
Asbestos Disease Support SocietySPRING NEWSLETTER 2016
Date Claimers
Front cover photo: ADSS Race day; Patricia Ramsay, Trevor Gillmeister, Kerrie Williams and Kay Ravbar
Brisbane South Social Group
Second Friday of the Month• 14 October• 11 November – Christmas Lunch
At Sunnybank Hills Library from 9:30am
Brisbane North Social Group
First Wednesday of Month• 5 October• 2 November – Christmas Lunch
At Bracken Ridge Library from 10:00am
Annual General Meeting 19 October
Symposium 19 October
ASEA Conference 13 – 15 November
Asbestos Awareness Week 20 – 25 November
Asbestos Awareness Stall 22 November – Reddacliff Place Brisbane CBD
Ecumenical Service 25 November
1SPRING NEWSLETTER 2016Asbestos Disease Support Society
In This IssueCEO Report 2
Using a multidisciplinary approach to combat the burden 6 of asbestos-related disease
Symposium 2016 7
Surgery Improves Quality of Life for Patients With Malignant 8 Pleural Mesothelioma
Apprentices learn about asbestos in domestic homes 9
Race Day 10
Thinking of my Friend Tony Medina 12
Board Elections 13
Research Trials 14
Brisbane North Social Group
First Wednesday of Month• 5 October• 2 November – Christmas Lunch
At Bracken Ridge Library from 10:00am
SPEAKERS Thady Blundell, Chairperson Professor Nico van Zandwijk, Mesothelioma Treatment /Research Dr Robert Edwards, Diagnosis of Asbestos Disease - Radiology Dr Katherine Semple, Pleural Plaques/Asbestosis & other Asbestos Diseases Explained Lou Williams, Mesothelioma Warrior, Her Story
SPEAKERS Thady Blundell, Chairperson Professor Nico van Zandwijk, Mesothelioma Treatment /Research Dr Robert Edwards, Diagnosis of Asbestos Disease - Radiology Dr Katherine Semple, Pleural Plaques/Asbestosis & other Asbestos Diseases Explained Lou Williams, Mesothelioma Warrior, Her StorySPEAKERS
Thady Blundell, Chairperson Professor Nico van Zandwijk, Mesothelioma Treatment /Research Dr Robert Edwards, Diagnosis of Asbestos Disease - Radiology Dr Katherine Semple, Pleural Plaques/Asbestosis & other Asbestos Diseases Explained Lou Williams, Mesothelioma Warrior, Her Story
SPEAKERS Thady Blundell, Chairperson Professor Nico van Zandwijk, Mesothelioma Treatment /Research Dr Robert Edwards, Diagnosis of Asbestos Disease - Radiology Dr Katherine Semple, Pleural Plaques/Asbestosis & other Asbestos Diseases Explained Lou Williams, Mesothelioma Warrior, Her Story
SPEAKERS Thady Blundell, Chairperson Professor Nico van Zandwijk, Mesothelioma Treatment /Research Dr Robert Edwards, Diagnosis of Asbestos Disease - Radiology Dr Katherine Semple, Pleural Plaques/Asbestosis & other Asbestos Diseases Explained Lou Williams, Mesothelioma Warrior, Her Story
SPEAKERS• Thady Blundell, Chairperson
• Professor Nico van Zandwijk, Mesothelioma Treatment /Research
• Dr Robert Edwards, Diagnosis of Asbestos Disease - Radiology
• Dr Katherine Semple, Pleural Plaques /Asbestosis & other Asbestos Diseases Explained
• Lou Williams, Mesothelioma Warrior, Her Story
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CEO Report
Once again we have had a busy few months which has culminated in an extremely successful Race
Day. Trish Ramsay and I were on the road again down to the Gold Coast and up to Rockhampton, we are becoming well known on the Home Show circuit. Margot Hoyte and I travelled to Warwick for their Seniors Expo which was also a very worthwhile exercise.
As you see I have plenty to report on in this Newsletter.
Sound Governance and ComplianceIn the last newsletter I referred to a survey of members, this will be posted in the next few weeks and is being done by the Social Research Centre at ANU. I would encourage people to complete this survey in order that we can further develop our program of services for sufferers.
We are currently finalising our 2015/16 accounts ready for the Auditor and the final report will be presented to the Annual General Meeting in October. All members are able to attend the Annual General Meeting which will be held after the Symposium on October 19. Should anyone wish to view a copy of the Audited financial report please contact the office on 1800 776 412.
Members unable to attend the meeting and wishing to exercise their vote can now appoint a proxy, notification must be consistent with the following format:
This form must be presented not less than 48 hours before the meeting.
At this stage the agenda is consistent with the notification that you should have received in the mail.
Under the Constitution of the Asbestos Disease Support Society Limited half the Directors turn over each year in order to keep the corporate knowledge of the Board decision making. This year Andrew Ramsay, Pat Cini, Bud Neiland and Trish Ramsay terms as Directors end at the AGM which is why nominations for Directors have been called. All Directors were eligible to renominate. Sadly we see Bud Neiland stand down as a Director as of the AGM. He will be sorely missed.
We now have two casual vacancies, one was a replacement for Rod Towerton which the Board had kept open hoping that a member who has an asbestos related disease or a carer would nominate. The other vacancy has been caused by my resignation as a Director, now that the Board is operating as a company Board. I will however remain in my role as CEO.
At the close of Nominations we had received six nominees and all persons were eligible to nominate in accordance with Clause 13.9 Following consultation with ADSS Lawyers, the Chairman of the Board, Mr Andrew Ramsay has declared all nominees duly elected: Andrew Ramsay, Trish Ramsay, Patricia Cini, Garry Rogers, Sheila Hunter and Phil Blair.
Asbestos Disease Support Society Limited
i/We …………………………………………...................., of …………………………………………………................
being a member/members of the Company, appoint
...............…………………………………………................... of ……………………………………………….......…..........
or, in their absence, ……………………………............……. of …………………………………………............................
……………………………………………………………..…...
As my/our proxy to vote for me/us on my/our behalf at the *annual general meeting of the Company to be held on the
Nineteenth day of October 2016 and at any adjournment of that meeting.
This form is to be used *in favour of/ against the resolution.
Signed this ………….................……….. day of ….…………………………….............….. 2016
3SPRING NEWSLETTER 2016Asbestos Disease Support Society
Sound and Sustainable FinancesADSS made a profit in the 2015/16 year of approximately $62,000 (yet to be audited). We have also made a substantial profit on our Race Day. So in conjunction with the money we receive from Queensland Health this places us in a good position for 2016/17 to carry out our program of work.
We also receive a number of Donations and Bequests which assist us along the way as well.
Unfortunately there seems to be some confusion amongst members and whilst families have good intent to have donations from funerals given to the Society they have in fact identified the incorrect organisation in their notification. Should the envelopes be addressed to another organisation we are obligated to forward them on to that group.
Donors $500 and over:
• Fernanda Moffat
• Seamus McMahon
• The late Dorothy Gill
Sound Support Arrangements for SufferersThe Board visited Princess Alexandra Hospital Ward 2E to formally hand over another VersaCare bed and Humidifier. The Bed was gratefully accepted by Ms Katherine Brady, The Nurse Unit Manager.
In August whilst in Rockhampton a morning tea was held for sufferers and/or their carers. This was once again well attended and a few old work colleagues got to catch up which was nice to see. We also visited Redlands and Gold Coast for morning teas which were also well attended.
A big thank you to all who helped with the Keytruda petition we received just under 4000 signatures and this will now be forwarded to the federal House of Representatives for action.
Members should have received their invitation to the Symposium by now which will be held at the Hotel Jen, we have a good line up of speakers this year. For those who are unable to attend we are endeavouring to have the sessions filmed and we will put this on our website at www.adss.org.au
The Ecumenical Service will be on the 25 November at the Cathedral of St Stephen in Elizabeth Street.
Our support calls continue to keep Leanne and Mark busy.
We would like to acknowledge the significant contribution made by Dianne Ellis, who has assisted us as a volunteer doing support calls to members for the past couple of years. Dianne is stepping down to spend more time with her family.
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Strengthen engagement with community, government, business and other SocietiesRepresentatives from ADSS attended the AAMA Memorial Service at Terranora lakes. This was a lovely outdoor service and a fitting service to remember those who have passed away with an Asbestos Related Disease.
Staff had a stall at the CFMEU Delegates conference. We do a lot of work with CFMEU delegates and are pleased to work with them whenever we can.
Beta Sigma Phi invited us to a fund raiser lunch which we attended as they have been very supportive of the Society over the years. It was all very exciting as people at our table scooped many of the prizes.
ADSS had a stall at the Gold Coast Home Show in order to continue our campaign of “Investigate before you Renovate”. We spoke to quite a mix of people here and the visit was well worthwhile.
ADSS had a lot of media leading up to the Rockhampton Home Show so we were a well-recognised brand at the show with many people commenting on the good work that the Society was doing. This is an area with a
large amount of asbestos in use in homes so we were kept busy.
We also attended the Warwick Seniors Expo and were kept very busy the whole time we were there. It was well worth going to and we also got to speak to many of our members who lived locally as well as help people out with information.
Our Annual Charity Race Day and Raffle was very successful as indicated before. This is well attended by representatives of all facets of the construction industry and gets bigger every year. The money raised goes to funding our program of activities for the upcoming year.
The Asbestos Safety and Eradication Agency (ASEA) International Conference is on in Adelaide this year November 13 – 15. Members are welcome to attend and should you be interested please contact the Society in order for us to arrange a discounted rate for you. ADSS representatives will be in attendance and I have been invited to speak.
So as we head into the third quarter of the year ADSS continues to have a full agenda with awareness raising activities and providing phone support for our members in need.
Amanda Richards
In Loving MemoryWilliam RingGlynn Thomas CreaghWilliam FerrariMichael PapworthAlexander DoddsGraham CowieReginald Egan
David FryBruce Gordon MackayPaul BeanWarren PriceJohn DugganDorothy May GillRichard Chappelow
Ronald Edward HalesBruce Arthur GrayTammy Marie HirschGlenn Reginald WareElizabeth Maria RaynerHarry James DohertyBarry Priestley
Alfred (Roger) GoodwinBernard Robert YoungSidney Samuel WalshArthur OwenThomas Herlihy
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ADSS Ecumenical Service
Friday 25 November, 2016From 11am
The Cathedral of St StephenElizabeth Street, Brisbane
RSVP to 1800 776 412
by Friday 18 November
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Using a multidisciplinary approach tocombat the burden of asbestos-relateddisease
AN UPDATE FROM THE ASBESTOS DISEASES RESEARCH INSTITUTE
Australia was the world’s highest per capita consumer of asbestos in the previous century. As
such, it is considered to be a sentinel site for observing, over time, the deleterious human health, environmental, economic and social effects associated with high levels asbestos exposure.1 The increasing awareness of the dangers of asbestos among asbestos workers in Australia and the public request for disease-oriented research resulted in the establishment in 2009 of the Asbestos Diseases Research Institute (ADRI), housed in the Bernie Banton Centre on the campus of the Concord Clinical School in Sydney.
The ADRI’s most important mission is to improve the grim outlook for patients with asbestos-related diseases. It was decided early on to adopt a multidisciplinary approach with the development of a research program concentrating on epidemiology and prevention of asbestos-related diseases; drafting guidelines for the diagnosis and treatment of malignant pleural mesothelioma (MPM); and establishment of a biobank for research into the biology of mesothelioma, to support the search for novel treatment approaches.
An essential tool for tracking the national mesothelioma epidemic was the re-establishment in 2010 of the Australian Mesothelioma Registry (AMR). The AMR collects fasttrack notifications of newly diagnosed mesothelioma cases across the country and invites patients/families to provide information about asbestos exposure. The AMR is a collaborative arrangement between Safe Work Australia, Comcare and the Cancer Institute NSW, with collaboration from the ADRI, Monash University, the University of Sydney, the Hunter Research Foundation, and state and territory cancer registries. ADRI analysis of AMR data suggests that the malignant mesothelioma epidemic is slowing, but the number of older patients diagnosed with MPM
is projected to increase until 2020. An increase in the incidence of malignant peritoneal mesothelioma among men up to 2025 is also projected.
In 2010, the ADRI convened a multidisciplinary national team of 50 mesothelioma experts and organised a detailed review of the world literature. Critical appraisal of 1110 publications led to 40 recommendations and 23 clinical practice points. The guidelines were approved by the National Health and Medical Research Council and published in 2013.2 These formed the basis of an
information booklet for patients and carers drafted in cooperation with Cancer Council Australia.3
Shortly after the ADRI’s establishment, a biobank was set up, supported by an equipment grant from the Cancer Institute NSW and corporate funding. The ADRI biobank has focused on the prospective collection of optimally preserved (fresh-frozen) tissue samples and blood from patients and control individuals, and represents Australia’s largest repository of
mesothelioma specimens. Fresh-frozen MPM samples have contributed to an intercontinental effort, led by The Cancer Genome Atlas, to picture the most important genetic changes in MPM, leading to a better understanding of the fundamentals of malignant mesothelial growth. Researchers at the ADRI have also made extensive use of formalin-fixed tissues archived by thoracic surgeons at Royal Prince Alfred Hospital. Comparison of tumour and control tissues revealed major changes in the expression of microRNAs, a class of non-coding gene regulators frequently lost in cancer. These changes have potential diagnostic, prognostic and therapeutic implications.
ADRI researchers showed that levels of microRNA-16 (miR-16), a gene known for its tumour suppressor activity, are significantly reduced in mesothelioma tissues. This observation led to additional laboratory
“the ADRI’s focus on epidemiology,
biobanking, guidelines, and research into the
basic biology of asbestos cancer has led to rapid
clinical translation”
7SPRING NEWSLETTER 2016Asbestos Disease Support Society
experiments using mesothelioma cell cultures and mesothelioma xenograft tumour-bearing mice. In both models, the addition of miR-16 mimics, synthetic versions of these short gene regulators, was able to halt tumour growth.4 The translation into the clinic was quickly made and a dose-finding (phase I) study was initiated at the end of 2014. This trial is using miR-16-based mimics packaged in nanocells, a unique delivery system developed by Sydney-based biotech company EnGeneIC. The nanocells are targeted with an antibody against the epidermal growth factor receptor. A major clinical response observed in the study — the first to be reported in a patient treated with a microRNA-based therapy — provided a clear indication that the new treatment concept is worth continued investigation, and a phase II study is in preparation.5
In a little over 6 years, the ADRI’s focus on epidemiology, biobanking, guidelines, and research into the basic biology of asbestos-related diseases has led to rapid clinical translation. It is a good example of how, with sufficient investment, a relatively small, disease-oriented research institute can produce prominent research outcomes within a relatively short time.
Competing interests: No relevant disclosures.
Provenance: Commissioned; not externally peer reviewed.
© 2016 AMPCo Pty Ltd. Produced with Elsevier B.V. All rights reserved.
References are available online at www.mja.com.au.
1 Leigh J, Driscoll T. Malignant mesothelioma in Australia, 1945- 2002. Int J Occup Environ Health 2003; 9: 206-217.
2 van Zandwijk N, Clarke C, Henderson D, et al. Guidelines for the diagnosis and treatment of malignant pleural mesothelioma. J Thorac Dis 2013; 5: E254-E307.
3 Cancer Council Australia. Understanding pleural mesothelioma: a guide for people with cancer, their families and friends. Sydney: Cancer Council Australia, 2015.
4 Reid G, Pel ME, Kirschner MB, et al. Restoring expression of miR-16: a novel approach to therapy for malignant pleural mesothelioma. Ann Oncol 2013; 24: 3128-3135.
5 Kao SC, Fulham M, Wong K, et al. A significant metabolic and radiological response following a novel targeted microRNA-based treatment approach in malignant pleural mesothelioma. Am J Respir Crit Care Med 2015; 191: 1467-1469.
Nico van ZandwijkMD, PhD, FRACP
Matthew SoebergMPH, PhD Glen ReidBSc, MSc(Hons), PhD Asbestos Diseases ResearchInstitute, Sydney, NSW. nico.vanzandwijk@ sydney.edu.au doi: 10.5694/mja15.01209
Symposium 2016
Asbestos diseases are a complex subject. There are various types of diseases with different prognoses,
some with treatment and some difficult to treat but with a number of developing treatments.
A person newly diagnosed with asbestos disease is often understandably confused as to their precise diagnosis and prognosis. Asbestos diseases often interact with non-asbestos related conditions, often making diagnosis and treatment difficult, and this can carry through to asbestos compensation claims with uncertainty and considerable dispute about appropriate compensation levels.
We are lucky to have four expert speakers at our Symposium 2016, to be held on Wednesday, 19 October 2016 who are going to educate us on asbestos disease.
Professor Nico van Zandwijk has been the Head of the Bernie Banton Research Institute since its founding. He is shortly to leave this position and return to his native Holland. Over the last decade there have been many advances and developments in treatment of mesothelioma and Professor van Zandwijk has been involved in much of this. We have seen success with Alimta chemotherapy treatment, the use of Keytruda, an immuno-boosting drug, and other novel and complex therapies. Professor van Zandwijk will be updating us in respect of this.
There is often great confusion about the distinction between pleural plaques, asbestosis and other benign or non-cancerous asbestos diseases. Dr Katherine Semple, Respiratory Physician, will be explaining these different conditions to us.
Diagnosis of asbestos disease can be a drawn out process. Chest x-rays and CT scans are the prime method to diagnose benign asbestos disease. How often should CT scans be carried out? Which is the appropriate scan to have? These questions and more will be addressed by Dr Robert Edwards, Respiratory Physician.
Finally, Ms Lou Williams will discuss her treatment experiences for her condition of mesothelioma. In particular, Ms Williams will discuss the immuno boosting drug, Keytruda.
Again, we are very lucky to have the above speakers and, whilst I have tried to touch upon all of the above topics in articles over the years, I am very much looking forward to hearing these prominent experts.
Thady Blundell Society Legal Adviser
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SURGERY IMPROVES QUALITY OF LIFE FOR PATIENTS WITH MALIGNANT PLEURAL MESOTHELIOMA
Undergoing pleurectomy and decortication (PD) for malignant pleural mesothelioma (MPM) generally
leads to improved quality of life after the surgery.1 These findings were presented at the 2016 American Society of Clinical Oncology Annual Meeting.
Many patients with malignant pleural mesothelioma avoid the operation because they fear it will degrade their quality of life. The disease is caused by environmental factors such as asbestos exposure and by a genetic predisposition to the cancer.
Malignant pleural mesothelioma develops in the pleura, the thin layer of tissue surrounding the lungs. As the tumor grows, it restricts the lungs, typically causing shortness of breath, fatigue, weight loss, and/or chest discomfort and pain. Pleurectomy and decortication involves removal of the pleura. Although the procedure cannot cure mesothelioma, it can help control the buildup of fluid, improve breathing, and lessen cancer pain.
The researchers who conducted this study, led by Wickii Vigneswaran, MD, of Loyola University Chicago Stritch School of Medicine, administered a cancer quality-of-life survey known as the EORTC QLQ-C30 to 114 patients with mesothelioma who underwent the PD procedure. Median age of the patients was 70 years; range, 50 to 88 years.
Prior to surgery, 31% of the patients had a performance status score of 0 (fully functional); 65% had a performance status score of 1 (able to do light house
work or office work); and 4% had a performance status of 2 (ambulatory and capable of self-care, but unable to work). Following surgery, all patients were surveyed at 1 month, 4-5 months, 7-8 months, and 10-11 months.
All patients reported improved quality of life at the 1-month survey that was maintained at late follow-up. Quality of life was not adversely affected by the procedure at any time in patients who, prior to surgery, had performance status of 1 or 2, a tumor volume greater than 600 ml, or a nonepithelioid tumor type.
“The net benefit of pleurectomy and decortication justifies the procedure in the majority of patients with malignant pleural mesothelioma,” Vigneswaran concluded.
Reference
1. Vigneswara WT, Kircheva D, Patino D, et al. Quality of life in patients undergoing pleurectomy and decortication for malignant pleural mesothelioma. Presentation at: 2016 American Society of Clinical Oncologists Annual Meeting; June 3-7, 2016; Chicago, IL. Abstract 8556.
www.oncologynurseadvisor.com/lung-cancer/pleurectomy-and-decortication-for-malignant-pleural-mesothelioma-increases-qol/article/506529/
Oncology Nurse Advisor
KATHY BOLTZ PHD
June 29 2016
9SPRING NEWSLETTER 2016Asbestos Disease Support Society
Apprentices learn about asbestos indomestic homes
Apprentice electricians just starting in their trade are most likely to have been born after it became illegal
to build houses with asbestos containing materials. Even so, they and other apprentice tradespeople need to know how to protect themselves from exposure when disturbing asbestos products in homes built prior to 1990.
Workplace Health and Safety Queensland (WHSQ) and Electrogroup Training Centre hosted an awareness session for electrical apprentices at their Rocklea facility recently. The session was an opportunity to remind tradies how often they come across asbestos in their day to day work and to use safe work practices when they do.
Minister for Industrial Relations Grace Grace first spoke to the group of apprentices to highlight the importance of asbestos safety. Her overarching message was for apprentices and new workers to ‘speak up’ if they were not sure they were touching asbestos or anything else they noticed that didn’t appear right with the job.
“Complete the job as well and as efficiently as you can - but don’t ever sacrifice your safety just to finish quicker,” she said.
After that, everyone in the room was silent as they listened to Julie Sager’s heart-wrenching story about her son’s death from mesothelioma. Adam Sager contracted the asbestos related disease 20 years after his parents had sanded back their walls ready for
painting as they built their first home. Although they didn’t know it at the time, Julie and Don Sager had exposed Adam to asbestos fibres when he was only 18 months old.
WHSQ inspector Stephen Dutka then demonstrated to the audience how to safely drill through asbestos products using low-speed drills and a disposable cup filled with shaving cream to prevent the fibres becoming airborne.
Raising awareness of the need to work safely with asbestos containing products goes a long way towards building the skills of apprentices and reducing dodgy work practices that could harm themselves or their clients and their families.
The Queensland Government continues to work with industry and local councils to share information around asbestos safety issues and to raise awareness of asbestos to domestic tradespeople and home renovators.
If you know a Queensland trade group interested in spreading awareness and education about managing the risk of asbestos, contact WHSQ on 1300 362 128 or email [email protected].
For more information or to download resources for your business, visit qld.gov.au/asbestos or call 13 QGOV (13 74 68).
10 Asbestos Disease Support SocietySPRING NEWSLETTER 2016
As reported previously The 2016 Annual Charity Race Day was another success with all attendees
having a fantastic time. The weather was a beautiful day although in some places a very strong breeze left the ladies hair looking a bit astray.
But can you believe that this was our ninth race day!
I would like to acknowledge the work of the CFMEU staff and Officials who worked hard to increase our ticket sales making this year a record year.
The band as usual were great playing music that most people knew and towards the end there were a few brave souls up dancing – including the CEO.
As usual betting was in full play but there were a few off field activities as well. This year we had a female and male Fashions of the Field. We had a huge line up for both events with some very smart looking attire on all of our participants.
We also had the wheelbarrow races which are now becoming very competitive with Turner Freeman threatening to bring along their own Wheelbarrow next year. But they will have to be good to beat Luke Gibson, a CFMEU Delegate who is the reigning winner in this area for a few years now.
The Annual Raffle was one by Lisa Pettersen who couldn’t believe she had won when her parents arrived to deliver the Trailer. Second prize was won by Adrian Flack, and third prize was won by United Voice.
A big thank you goes to Total Tools Coopers Plains for housing the raffle for a few weeks and selling tickets to all the Tradies.
We would like to thank everyone who attended as without you the day cannot be a success. The building Industry really comes to the fore on these occasions. But I would particularly like to thank our staff who have worked tirelessly to make this event the success it was.
I would like to thank our Race Sponsors:• Queensland Council of Unions• Turner Freeman Lawyers• BERT/CIP• Electrical Trade Union• CFMEU, Construction and General Qld and NT
branch• CFMEU, Mining and Energy Division • United Voice• CBUS
Event Sponsors:• A H Beard• BMD• CFMEU ACT Branch• Corinne Strong & Bonny Barry• F.T.F Pty Ltd• Master Builders Queensland• Normandy Hotel• Sealy of Australia• Sleepmaker• Slater Gordon Lawyers• Total tools• Turner Freeman Lawyers• Milwaukee tools• Windsor Management Insurance Brokers
Special thank you’s:• Bud Neiland• Bev Robertson• Pat Cini• Helen Field• Trish Ramsay• Wendy Towerton• Rod Towerton• Good Guys at Lutwyche• Mark Forbes• Chisel Revisited
Winner of the Flight Centre Voucher: Adrian Flack - 2nd Prize
Bud Neiland
Pat, Trish, Rod & Wendy (Our Volunteers)
Crowd ready
Race Day
11SPRING NEWSLETTER 2016Asbestos Disease Support Society
Winner of the Flight Centre Voucher: Adrian Flack - 2nd Prize
Bud Neiland
Pat, Trish, Rod & Wendy (Our Volunteers)
Crowd ready
ADSS Race Day
The judges ‘Fashions on the Field’
Amanda, Corrine & Bonnie
Winner Luke Gibson
Winner of the Trailer Raffle – 1st Prize Lisa Pettersen
Instagram ready
Kay & Leanne
12 Asbestos Disease Support SocietySPRING NEWSLETTER 2016
Thinking of my Friend Tony Medina
A good-looking, soccer-loving charmer, my good friend Tony Medina worked tirelessly for two
decades to safeguard workers against the hazards involved in the removal of asbestos – an area he himself had worked in before becoming a union official.
A life affirming man who inspired others to do good, he died eight years ago of mesothelioma at 43, leaving a wife, children, extended family and friends behind.
I’ve been thinking of him a lot lately, because of the discovery of asbestos on two construction sites in Brisbane and Perth. The lethal product that has been proven to cause cancer was uncovered, not by Yuanda, the company that imported and supplied the product to construction sites, not by the government in which we trust to control what comes through our borders, not by the employer on whose job it was used, but by the union delegate on the job. Though 13 years have passed since the ban on use and importation of asbestos in Australia came into effect, the product is finding its way into the country and onto our workplaces, leaving workers potentially exposed to it without their knowledge.
The shocking discovery by the delegate on that site set alarm bells off throughout the union nationally and we swung into action. In Perth, our officials faced an uphill battle getting onto the Children’s Hospital site where the same company, Yuanda, had also supplied products. Once there, we quickly established that asbestos was contained in roof panels being used on that site. In fact, Yuanda has supplied products to nearly 70 jobs throughout Australia in the last 10 years.
More frightening is that these imports don’t appear to be an isolated case. The Asbestos Eradication Agency has reported that there are a number of products being imported that contain asbestos, including polystyrene sandwich panels, fibre reinforced cement boards, boilers, a shed and electrical switch boards.
How many thousands of people have been exposed? How has this happened?
The CFMEU has been calling for action from the Federal Government on the importation of building
materials and they have sat on their hands. The illegal importation of unsafe and poisonous building products has been raised in Parliament, was the subject of a Senate inquiry, and made the front page of a national newspaper several times over the past year without any appropriate response from the government.
People’s lives are at stake. The importation of unsafe and poisonous building materials poses a risk not only to workers, but to the community. We all know about the wives and children of workers who were exposed to asbestos because their clothes were washed in the same washing machine. We all know about companies like James Hardie, who in their quest for profits, hid vital information about the dangers of asbestos from their own workers. Prominent court cases, documentaries, films and dramatic plays have dealt with the legacy of asbestos and the ruination it wrought on whole communities like Witenoom.
All of us should be demanding that the Federal Government tell us their plan to improve the system that is supposed to protect us from lethal products. All of us have a right to know what action the government intends to take against Yuanda and other companies that break the law by importing banned products and fail in their legal obligations to provide documentation about what is brought into Australia.
And anyone who has ever questioned the role that our union plays in the workplace and in the wider community need look no further than this case. If not for the trained site delegate and safety representative on the Brisbane site who unearthed the asbestos in the course of his duties, we would all still be in the dark.
There have been decades of struggle by unions and the community, years of work by dedicated people to put an end to the use of asbestos and the pain and suffering it has inflicted on so many. We have a long, sorry history of asbestos exposure in this country, of criminal behaviour by heads of industry, the repercussions of which are still being felt, generations on.
We will not go back to the position where we started 30 or 40 years ago, because those people who die the long and painful deaths are not just statistics to us. They are people like Tony Medina, a friend of mine cut down in the prime of his life, no longer with us because in his quest to earn a living for himself and his family, his life was put in danger by the corporate indifference that prioritises profits over and above all else.
It’s that corporate indifference that I and those who work alongside me are driven to challenge for the sake of the health and well-being of all those who work in our industry.
For us, asbestos is not academic. It’s personal.
By Dave Noonan
13SPRING NEWSLETTER 2016Asbestos Disease Support Society
Board Elections
As mentioned earlier the call for nominations for Directors has been occurring over the past few weeks. At the close
of nominations we had received six nominations.
Bud Neiland
Bud Neiland has decided not to run again due to work commitments but will still assist us with Race Day. Bud has been very good at leading the discussions around fund raising and has helped put us in the good financial position that we are in. We thank Bud for all his tireless work for the Society.
Amanda Richards has also decided to stand down as a Director. Amanda will still hold the role of CEO of ADSS. This left the Board with four Director vacancies and 2 casual vacancies.
On this basis the following people have been elected as Directors of the Society.
Patricia Ramsay
Patricia Ramsay has worked as a volunteer for the society since 2007. Patricia has also been a proud committee and board member of ARDSSQ/ADSS since 2009.
Over that time, Patricia has supported the society in many ways including travelling all over Queensland to talk about, and promote asbestos awareness. Patricia has attended morning teas, seminars, fund raisers, and many other society events. Patricia has also attended many political meetings and WHSQ events, supporting people who suffer from asbestos disease.
Andrew Ramsay
Andrew has been a member since 2009. Andrew was elected Chair of ADSS in 2015. He previously had held the positions of Vice President of ARDSSQ 2012 – 2015, and Chair of ARDSSQ Management Committee since 2014.
Andrew is the Work Health and Safety Co-ordinator for the CFMEU Qld and NT and has a passion for representing workers and preventing the community being exposed to asbestos containing materials.
Andrew is a carpenter by trade and has been a union official for 27 years. Andrew has been very active with the Society since 2005, undertaking voluntary work to assist the Society often at short notice.
Patricia Cini
Pat has been involved with the Asbestos Society as a volunteer for many years after her husband was diagnosed with Asbestosis of which he has since passed.
This included running the Southside Support Group, ringing members, giving them phone support and information as to the assistance that ADSS could give them. She has attended morning teas, seminars and Home Shows to inform the public of the dangers of asbestos. Pat has been on the Committee of ADSS for many years and a Director for two.
Garry Rogers
Garry has always been vocal about the dangers of asbestos and is motivated to remove all produced asbestos material from our society to reduce the risk of future generations of children and grandchildren being exposed.
Recently Garry was involved in a campaign highlighting the asbestos in the Telstra pits and pipe, not only to the NBN and Telstra workers but to members of the public.
Garry has represented his union (Electrical Trade Union) at a number of different asbestos conferences and has been nominated as the Queensland asbestos officer which calls upon him to advise, consult and negotiate a lot of different initiatives about identifying asbestos and its removal from workplaces.
Sheila Hunter
Sheila is married with two grown up sons and lives in Redland Bay. Her husband Ken and Sheila have been members of ADSS for a couple of years
Sheila has been a member of United Voice for 21 years and has been an official since 2004. Sheila currently holds the position of Assistant Secretary and in that capacity sits on a number of boards including Club Super, QIEC Super and Queensland Community Alliance .
Phil Blair
Phil was a Carpenter with asbestos products during the eighty and nineties and now works with the CFMEU as an Asbestos Awareness Trainer. He is a qualified A& B Class removal and an A Class supervisor. He is passionate about eradicating asbestos in the building industry and stopping asbestos imported products coming into Australia.
14 Asbestos Disease Support SocietySPRING NEWSLETTER 2016
Research Trials
The following two exerts are taken from the Australian New Zealand Clinical Trials Registry and according
to the data base are currently recruiting participants. Should you be interested, please talk to your treating doctor who can investigate your eligibility and organise for you to participate in the trial at a facility near you.
TRIAL ONE
Public title: Health Related Quality of Life in Malignant Mesothelioma
Scientific title: An Observational Study of Health-related Quality of Life in People with Malignant Mesothelioma
Brief Summary
This study aims to describe the symptoms, quality of life and supportive care needs of people diagnosed with malignant mesothelioma (MM). Additionally, we aim to describe the nutritional and functional status of people with MM, and to assess the relationship between psychological factors (anxiety and depression) and quality of life and other outcomes. Who is it for? You may be eligible to joint this study if you are aged 18 years or more and have been diagnosed with malignant mesothelioma. Study details Participants in this study will be asked to complete a range of patient reported outcome measures at 6-12 week intervals for up to 2 years. These measures will include assessment of health related quality of life, anxiety and depression and unmet supportive care needs. Optional sub-studies will involve nutritional assessment, functional assessment and donation of additional blood for the analysis of inflammatory markers.
Health condition(s) or problem(s) studied:• Malignant Mesothelioma• Health Related Quality of Life• Anxiety• Depression• Supportive Care Needs• Nutritional Status• Functional Status• Inflammatory Response Study type: ObservationalPatient registry: TrueTarget follow-up duration: 2Target follow-up type: Years
Description of intervention(s) / exposureParticipants involved in primary study will complete a range of patient reported outcome measures at 6-12 week intervals for up to 2 years. These measures will include assessment of health related quality of life, anxiety and depression and unmet supportive care needs. Optional sub-studies will involve nutritional assessment, functional assessment and donation of additional blood for the analysis of inflammatory markers.
EligibilityKey inclusion criteria1. Patients with a diagnosis of malignant mesothelioma 2. Able to comply with planned procedures and provide
written evidence of informed consentMinimum age: 18 YearsMaximum age: No limitGender: Both males and femalesCan healthy volunteers participate? NoKey exclusion criteria1. Patients with insufficient English will be excluded
from patient reported outcome component of the study but can still participate in the other aspects of the study.
2. People unavailable or unwilling to consent to ongoing follow-up
Contact person for public queriesName: Mr Jason FowlerAddress: Asbestos Diseases Research Institute PO Box 3628 Rhodes NSW 2138Country: AustraliaPhone: 61297679847Fax: 61297679860Email: [email protected]
TRIAL 2
Public title: Opioids for breathlessness in people with mesothelioma or asbestosis or other causes of interstitial lung disease.
Scientific title: A randomised, placebo-controlled, double-blind, cross-over study of the efficacy of sustained-release low dose morphine in the subjective sensation of dyspnoea as a result of maximally treated mesothelioma or asbestosis or other causes of interstitial lung disease in opioid naive participants.
15SPRING NEWSLETTER 2016Asbestos Disease Support Society
Brief summary
This study aims to determine whether morphine reduces the feeling of breathlessness in patients with mesothelioma, asbestosis or interstitial lung disease. Who is it for?you can join this study if you are 18 years or more, and suffer from a feeling of breathlessness (dyspnoea) as a result of maximally treated mesothelioma, asbestosis, or interstitial lung disease. You must be able to speak English and should not be taking regular opioid medication (painkillers). Trial detailsParticipants in this trial will be randomly (by chance) assigned to receive either 20mg sustained-release morphine (by oral capsule) together with a laxitive Coloxyl and Senna, or placebo (sham) tablets for one week. They will receive no medication for the second week and will then receive the alternate treatment ( morphine or placebo) for the third week. Participants will not know when they are taking the active drug or placebo. Participants will be asked to complete questionnaires and keep a diary over the 3 weeks of the trial to determine their response to treatment. They will also be phoned and visited at home by a nurse to monitor any side effects of treatment.
Health condition
Health condition(s) or problem(s) studied: Dyspnoea in opioid naive participants with mesothelioma or asbestosis or other causes of interstitial lung disease.
Condition categoryCondition code• Respiratory• Other respiratory disorders / diseases• Cancer• Lung - Mesothelioma
Intervention/exposureStudy type: Interventional
Description of intervention(s) / exposure:åOne capsule of sustained- release Morphine 20mg taken orally, daily for 7 days, 1-2 tablets of Coloxyl and Senna taken orally, daily for the same 7 days, then a washout period of one week before crossing over to the placebo treatment . Tablets contain Docusate Sodium 50mg total sennosides (calculated as sennosideB) 8mg
Intervention code [1] Treatment: drugsComparator / control treatment
One capsule of sustained-release Morphine 20mg placebo taken orally, daily for 7 days.(This medication
will be encased in an opaque capsule to ensure the study medication and placebo look identical).This placebo capsule will contain granulated Microcrystalline cellulose. Also taken will be 1-2 tablets of Coloxyl and Senna placebo taken orally, daily for 7 days.( this placebo formulation will be lactose, starch maize, gelatin, magnesium stearate, propyl hydroxybenzoate, opadry brown and carnauba wax and will have the same outward appearance as the intervention tablets.
Control group: Placebo
EligibilityKey inclusion criteriaEnglish speaking. Participants over the age of 18.Dyspnoea (3 or greater on the Medical Research Council scale) secondary to mesothelioma,asbestosis or any other cause of restrictive type pattern of interstitial lung disease. Renal function - calculated creatinine clearance >10mmol/l. Haemoglobin > 10 g/dl, or treating clinician has reviewed the haemoglobin result and confirmed that particpant does not need a blood transfusion. On stable oxygen - no changes to prescription in the last 3 days. On stable medications – no changes to prescription medications in the last 3 days. Able to complete participant diary.Willing and able to give informed consent.
Minimum age: 18 YearsMaximum age: No limitGender: Both males and femalesCan healthy volunteers participate?: NoKey exclusion criteriaTaking regular opioid medications.True adverse reaction(s) to morphine previously. Known hypersensitivity to any of the morphine sulphate capsule components. History of central hypoventilation syndrome. Use of monoamine oxidase inhibitor(s) (MAOIs) in the last 2 weeks or proposed use during the study. Australian Karnofsky Modified Performance Status (modified AKPS) < 50. Acutely confused (Nursing Delirium Assessment Scale score > 0 at baseline).Cognitive impairment (Mini-Mental State Examination < 24 at baseline). Uncontrolled nausea or vomiting.Gastrointestinal obstruction or documented peritoneal mesothelioma. Pregnancy, risk of pregnancy or breast feeding mothers. Past history of significant illicit opioid misuse.
Contact person for public queriesName: Prof Prof David CurrowAddress: Department of Palliative and Supportive Services Flinders University 700 Goodwood Road Daw Park SA 5041Country: AustraliaPhone: +61 8 8275 1057Fax: +61 8 8375 1201Email: [email protected]
16 Asbestos Disease Support SocietySPRING NEWSLETTER 2016
21.6.16 - Toowoomba Morning Tea
26.7.16 - Beta Sigma Phi Charity Lunch
21.7.16 - Cleveland Morning Tea
28.7.16 - CFMEU Delegates Convention
29.7.16 - Gold Coast Home Show
21.6.16 - Toowoomba Morning Tea
28.7.16 - CFMEU Delegates Convention
21.7.16 - Cleveland Morning Tea
28.7.16 - CFMEU Delegates Convention
29.7.16 - Gold Coast Home Show
17SPRING NEWSLETTER 2016Asbestos Disease Support Society
4.8.16 – Gold Coast Morning Tea
18.8.16 - Warwick Seniors Expo
4.8.16 - Gold Coast Morning Tea
25.8.16 - Rockhampton Morning Tea
2.9.16 - PA Hospital Visit
4.8.16 - Gold Coast Morning Tea
25.8.16 - Rockhampton Morning Tea
18.8.16 - Warwick Seniors Expo
26.8.16 - Rockhampton Home Show
14.9.16 - ADSS Charity Race Day
Support Those Who Support The Society
Corporate Sponsors
The contact details for all of our corporate sponsors and corporate members are available by ringing
the ADSS office on 1800 776 412
ADSS is an endorsed charity (ABN 29 150 479 514).Donations of $2.00 or more are tax deductible.
We thank all members for their ongoing support.
Air Liquide Healthcare
AMWU
Asbestos Industry Association
BERT
CEPU – Plumbing Division
CFMEU – Mining & Energy Division
DOTS Allied Health Services Pty Ltd
Electrical Trades Union
Gumdale Demoltion Pty Ltd
IRT Asbestos Management Pty Ltd
Queensland Council of Unions
The Services Union
Slater + Gordon Lawyers
Thunderbird Demolition
United Voice
Workplace Health & Safety Queensland
Corporate Members
Thanks to QLD Health for providing funding to ADSS to help carry on our services.