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Asbestos Disease Support Society

16 Campbell Street, Bowen Hills, QLD 4006

PO Box 280, Spring Hill, QLD 4004

Phone: 1800 776 412

Winter 2017 NEWSLETTER

Asbestos Disease Support SocietyWINTER NEWSLETTER 2017

Date Claimers

Front cover photo:

Washington Memorial, Washington DC.

2017 Member Morning Teas

Darwin 22 JuneChermside 27 JuneWarwick 8 JulyCairns 25 JulyTownsville 26 JulyMackay 27 JulyRockhampton 28 JulyBeaudesert 9 AugustLogan 10 August

Redlands 29 AugustNorth Lakes 26 SeptemberGold coast 5 OctoberBrisbane City 18 OctoberGladstone 24 OctoberBundaberg 25 OctoberHervey Bay/Maryborough 26 October Gympie 27 October

Brisbane South Morning Tea Group

Sunnybank Hills Library from 9.30am Second Friday of the Month

• 14th July• 11th August• 8th September• 13th October• 10th November - Xmas Lunch

Brisbane North Morning Tea Group

Bracken Ridge Library from 10.30am First Wednesday of the Month

• 5th July• 2nd August• 6th September• 4th October• 1st November – Xmas Lunch

If you wish to enquire or attend any of the above Morning Tea Events, you may, by calling the society on 1800 776 412.

1WINTER NEWSLETTER 2017Asbestos Disease Support Society

In This IssueIn Loving Memory 2

People Around the World Mourn Passing Of Mesothelioma Warrior And Advocate Lou Williams 3

Ceo Report 4

Is There A Cure For Mesothelioma? 6

Compensation For Asbestos Disease Treatment Costs 8

New Evidence Suggests Radiation May Boost The Power Of 9 Immunotherapy In Mesothelioma Treatment, According To Surviving Mesothelioma

Your Digital Estate 10

New Clinical Trial Offers Hope For Patients With Hard-To-Treat Cancer Caused By Asbestos 11

Educating School-Leavers On Asbestos Dangers Is One Way 13 To Reduce Rate Of Deadly Exposures

September 11: Death Toll Could Rise By Millions From ‘Toxic’ 15 Asbestos Dust

Complaints Policy 18

User Rights and Responsibilities 19

The Society At Work 20

Annual General MeetingThe ADSS Annual General Meeting is scheduled for Wednesday 18 October at Hotel Jen

following the Morning Tea event. All members are encouraged to attend.

2 Asbestos Disease Support SocietyWINTER NEWSLETTER 2017

Paul Raymond FutcherRonald Adrian Rees

Edmund Vincent DavernBruce Levin

Edward M CollcuttGregory Doran

Ronald James MoirRowland John Lang

John WrenJack Nicholas

Ronald ‘Bruce’ IrvingDouglas Morley Watkins

Peter Edmond ThornthwaiteGary Raymond StehbensKenneth George SprigingsRobert (Graham) Nimmo

Peter HintersteiningerPatricia Lindsay

Charles James Cutter

In Loving Memory


People Around The World Mourn Passing Of Mesothelioma Warrior And Advocate Lou Williams

The mesothelioma community is deeply saddened by the passing of mesothelioma warrior and the

community’s leading advocate, Louise “Lou” Williams of Australia. On April 18, Lou lost her nearly 15-year battle to the disease that also stole her father from her over three decades ago.

While fighting for her life, after being diagnosed with pleural mesothelioma in 2003 and peritoneal mesothelioma in 2009, Lou began a worldwide campaign to get asbestos banned from every country. Throughout her advocacy years, Lou joined efforts with Asbestos Diseases of Victoria, Asbestos Diseases

Foundation of Australia, Global Ban Asbestos Network, the Asbestos Disease Awareness Organization and an untold number of patients and families to keep others from suffering the way she and her family did.

Lou did not hesitate to use petitions as a way to bring about change. She began a petition to the State of Victoria, Australia to encourage the state to join the National Asbestos Strategic Plan, and a petition to get the immunotherapy drug Keytruda added to the Pharmaceutical Benefits Scheme to allow Australian oncologists to offer the treatment to mesothelioma patients free of charge or for a negligible amount.

In March 2015, when Lou thought she was on her death bed, she was given a new lease on life when she began taking Keytruda. Thanks to the drug, Lou told MesotheliomaHelp at the time, “Keytruda has given

me back my life, as my body was literally shutting down.”

True to Lou’s mantra, “I will never, never, never give up!” she kept up her advocacy efforts even while lying in bed by sending a video of herself wishing the ADAO “all the best” as it kicked off its 13th annual International Asbestos Awareness and Prevention Conference in early April.

Linda Reinstein, ADAO Co-Founder, President and CEO, who probably knew Lou best, wrote on Facebook: “Her legacy to raise awareness, embrace unity, support efforts to find a cure, and to ban asbestos will live on in each of us.”

Mavis Nye of England, who is an eight-year mesothelioma survivor and had a special bond with Lou as the two of them joined efforts to bring Keytruda to mesothelioma patients, said, “It was an awful shock when I woke up yesterday, I just burst into tears. Lou your spirit will always be with us.”

“Heartbroken to hear of the passing of Lou Williams, an incredible woman and meso warrior who worked tirelessly to help others,” wrote Jennifer Gelsick, who lost her father to the disease in 2013. “You are an inspiration to all who work to end this disease, and my prayers are with you and your family.”

Lou leaves behind her husband, Keith, two daughters and four stepchildren, 13 grandchildren and great-grandchildren.

Read Lou’s story on her blog at “Asbestos – Living with Mesothelioma in Australia – Louise (Lou) Williams.”

About the Author Nancy Meredith

Nancy is a blog and content writer with more than 20 years of professional experience. Nancy has been writing about mesothelioma and cancer for close to eight years.

Linda Reinstein, ADAO

“Lou will be missed beyond measure, but never forgotten.”


CEO Report

Since my last report I have been at the Brisbane Home Show; the ADAO Conference in Washington

with Trish Ramsay; the Naval Stokers Reunion in Canberra with Turner Freeman Lawyers; the Roma Show with Bev Robertson, Pat Cini and Trish Ramsay in the Gilly Van. Bev, Pat and Trish went on to do the Charleville Show.

We have also had Worker’s Memorial Day, Labour Day BBQ, along with Morning teas in Kingaroy, Ipswich and Bribie Island.

So not much really!

Kay and Kerrie are busy processing membership renewals and organising the morning teas. Leanne continues to visit doctors and other health professionals as well as contacting members in need.

But on a sad note the world has lost a great asbestos related disease advocate Lou Williams. Lou had a beautiful soul and reached out to many people with mesothelioma to help them along their journey. Our sympathy goes out to Keith and all the family. Many of us enjoyed having a High Tea with Lou when she was in Queensland, or organising one in her absence under instruction!

Sound Governance and ComplianceThe ADSS Board had their Planning Day in March, this was facilitated by David Fishel from Board Connect. The Strategic plan was reviewed and only minor wording changes made. The Board wants ADSS to concentrate on creating awareness amongst the Aboriginal and Torres Strait Islander Communities in Queensland and the Norther Territory.

The ADSS Risk Management Plan has also been rewritten and is available to members upon request.

The Board has also approved a new Complaints policy which I have included in this newsletter for your information.

Sound and Sustainable FinancesOur financial situation is still healthy; however, I believe our overall donations to the Society have decreased this year.

The following people need to be recognised for their donation of over $500 to ADSS:

Wendy Levien Fernanda MoffatJudith MullerWestern Queensland Air Maintenance

Sound Support Arrangements for Sufferer’sOnce again thank you to all the members who responded to the Survey, and for your positive feedback. No changes or new services were recommended by members.

Whilst we continue our phone support our Morning teas around Queensland and the Northern Territory continue with the support of Turner Freeman lawyers. Following feedback from members we will also be holding a morning tea at Beaudesert in August.

Our relationship with Turner Freeman Lawyers is invaluable. They have been working in the area of asbestos related disease claims for many years and understand the intricacies of the claims, they also have a wealth of knowledge on workplaces around Queensland which can often help when memories are a bit vague.

WorkCover have a policy position now of encouraging people to come straight to them and they will assist them with their claim, which is commendable however asbestos related disease claims are not always straightforward and information that is given quite innocently, can later be a detriment to your overall clam. We therefore recommend that anyone with an asbestos related disease see a lawyer before putting in any claims.

We continue to work with DOT’s and the UQ Dietetics clinic, should you feel you may benefit from these services please talk to our Member Services Officer, Leanne.

ADSS has now leased Office space in Darwin and will be attending this office once a month to start with. We will be holding our first morning tea in Darwin at the end of June.

Your 2017/18 membership

is due by 30 June

Amanda Richards


Strengthen engagement with community, government, business and other SocietiesADSS continues to advertise in the Road Ahead, the RACQ magazine as it has a large distribution. This has led to us picking up a substantial number of new referrals that we would not have been able to communicate with otherwise.

The various asbestos related disease support groups continue to meet to organise a national approach to AAW, we are all working very well together on this project. A united approach will in my opinion have a larger impact on a national level.

The asbestos related disease support groups have been invite to Canberra on June 21 to meet with the Parliamentary Group on Asbestos Related Diseases (PGARD) to receive a presentation from the new Director of ADRI, Professor Ken Takahashi. Board Chair Andrew Ramsay and myself will attend this event.

Whilst in Canberra we hope to meet with relevant people to progress the recently released Asbestos Safety and Eradication Agency (ASEA) report Remote Australian communities; The asbestos legacy.

The federal Government have announced the new Board for ASEA, unfortunately they failed to include anyone who is involved with asbestos sufferer or victim groups. The asbestos related disease support groups supported correspondence sent to the government from GARDS. They have since been advised that we will be able to have someone attend meetings as an observer. The groups are yet to decide who this will be.

As indicated before Trish Ramsay and I were privileged to attended the ADAO Conference in Washington.

We met many international guests (Canada, South Africa, Brazil, & Portugal) and viewed a historical collection of memorabilia around asbestos mining and production in the USA.

Events commenced with a cruise down the Potomac, and it was freezing so most sights were viewed from inside the boat. The trip marked an end to global asbestos week and the day ended with the lighting of the candle and a lot of tears.

The conference itself was tightly run, with speakers every 15 minutes. The theme was “Where Knowledge and Action Unite”. In total, there were 23 speakers over 4 sessions.

This was followed by their awards dinner. Their awards are very similar to the ADSS structure.

Sunday morning was a Unity and Remembrance Brunch. The Brunch was based on the arts with Jordan Zevron talking about “Making Messages Sing with Art

and Advocacy”. Paulo Monaco then showed a short film called “the Mother” as part of his presentation “Putting a Spotlight on Asbestos Awareness through Film”. Jill Cagle then sang “The Climb” a Miley Cyrus song. The program concluded with the lighting of the candle

We continue to work with our industry partners and are currently lobbying to have the 10-square metre rule removed from legislation allowing home owners to remove asbestos. Feedback at home shows is that this rule is abused and therefore families and the community are being put at risk due to unsafe practices.

Advocate on matters pertinent to ARD sufferers, people exposed to asbestos and for the prevention of exposure to asbestosThe Senate Inquiry reported on earlier this year is due to report in October this year. The ACTU is hoping for a few more hearings around the various states.

In July over 300 workers registered possible exposure to asbestos fibres at the 1 William Street site in Brisbane. The asbestos had been imported from China. The matter is still under investigation by Border Force and Work Safe Queensland. ADSS continues to keep a watching brief on this issue and has been consulting with the relevant state government departments on the progress of the matter.

The Rotterdam Convention once again failed to make progress to require companies exporting asbestos to advise of the health risks associated with the product. A block of African nations attempted to change the voting process, as currently it requires a consensus vote. This was blocked by six countries India, Russia,

The pro asbestos lobby has very strong linkages and continues to apply pressure to keep asbestos production continuing. To the degree that a spy was employed to infiltrate the national movement.

Donations to ADSS can be made via our website at www.adss.org.au.

Should you wish to organise In Memorium donations on behalf of a family member, donation envelopes are available from the office.

All donations to ADSS over $2.00 are tax deductible.

Some people may also like to donate to ADSS through a Bequest in their will. This requires wording which your lawyer can assist you with.


Is There A Cure For Mesothelioma?

WWW.ASBESTOS.COM BOUGHT TO YOU BY THE MESOTHELIOMA CENTRE

Doctors haven’t found a cure for mesothelioma, but researchers constantly strive to improve cancer

treatments, learn from clinical trials and discover new therapies for helping people live longer, healthier lives with their loved ones.

That’s one of the first questions mesothelioma patients ask their doctors after learning of their diagnosis: “Is there a cure?”

Unfortunately, the answer is no. There is no cure for mesothelioma — at least not right now.

But improvements to current cancer treatments, breakthroughs in clinical trials and a better understanding of the aggressive asbestos-related cancer are getting researchers closer to finding a cure.

What’s the proof? Survivors are living longer, healthier lives, despite the less than optimistic prognosis.

“This is not the death sentence it was 20 years ago. Long-term survival is possible. We now have the road map, and others have traveled the path, I remain optimistic that we can, in the next decade, put together the right combination of patient and treatment to affect a cure, which is our holy grail.”

Dr. David Sugarbaker

Thoracic Surgeon

Current Treatments Fuel Mesothelioma Research

While chemotherapy, radiation and surgery remain the traditional and best treatments for mesothelioma, researchers are improving their efficacy and looking for new ways to perform these therapies.

As a result, surgeries are more precise; therapies are more exact; and chemotherapy and radiation are more effective.

Here are some examples of how researchers are refining these treatments:

ChemotherapyThe most effective chemotherapy treatment combines the FDA-approved drugs pemetrexed and cisplatin combination. Researchers are now looking at the possibility of adding bevacizumab (Avastin), a third chemotherapy drug, to the combination with the hope all three drugs will delay the cancer spread and increase overall survival rates.

Clinical TrialsExtrapleural pneumonectomy, HIPEC and pleurectomy/

decortication are major surgeries that can remove all visible cancer cells if the cancer is detected at an early stage. But researchers are evaluating if adding heated chemotherapy or cryotherapy (freezing of tumors) to certain surgical procedures will improve overall effectiveness.

MultimodalWhile multimodal treatment — a combination of two or more traditional treatment types — can greatly improve a patient’s prognosis, researchers are striving to find new ways of combining existing treatments with emerging therapies such as immunotherapy, which boosts the patient’s immune system to attack cancer cells. Other possible combinations include gene therapy, which replaces a defective copy of the same gene, and targeted therapy, which focuses on a specific biological step in the life cycle of a cancerous cell rather than all cells.

Breakthroughs in Clinical Trials Bring Us Closer to a Cure

Since traditional treatment options currently do not provide a cure for mesothelioma, researchers are tirelessly looking for other therapies.

Currently, the process for introducing a new asbestos cancer medication typically takes 12 to 15 years. To ensure patient safety, adequate time must be spent in each stage of the development process. This is where clinical trials come in.

It takes nearly seven years for a new medication to make it to the first phase of a clinical trial. From there, the medication goes through four phases of clinical testing before becoming available for all patients.

Clinical trials are one of the best ways for researchers to improve their understanding of mesothelioma and to learn new ways to combat the disease. Once a specific drug or treatment has shown some success and safety in a lab setting, it can be studied in a clinical trial.

Recent clinical trials have greatly improved our ability to treat mesothelioma.

Immunotherapy

As one of the greatest medical advancements for the mesothelioma community, immunotherapy is sparking optimism with promising results in multiple clinical trials around the world. Patients and researchers are focused on the potential benefits of using your own immune system


to combat aggressive cancers, including mesothelioma.

Keytruda, the immunotherapy drug responsible for saving former President Jimmy Carter in 2015, is one of the most well-known immunotherapy drugs. The drug continues to show groundbreaking effectiveness in mesothelioma clinical trial participants.

Gene Therapy

Scientists continue to study the possibility of manipulating a patient’s genes to treat or prevent certain diseases. The goal of gene therapy is to directly repair problems caused by defective genes.

“It [the cure] is out there somewhere now,” said thoracic surgeon Dr. Raja Flores of Mount Sinai Medical Center in New York.” We just have to start thinking outside the box more. We’ve got to come up with something that no one has put together yet. But it’s there.”

For pleural mesothelioma patients, gene therapy is particularly effective given the location of mesothelioma tumors; doctors can easily reach the pleural membrane to deliver genes, conduct biopsies and monitor treatment results.

As for peritoneal patients, surgeons can target mesothelioma tumor cells specifically, rather than all rapidly dividing cells in the body, using the oddly named suicide gene therapy. One of the most extensively studied genes in this procedure is the herpes simplex virus thymidine kinase (HSV-tk). In 1995, several researchers created a model demonstrating that HSV-tk could be an effective treatment for peritoneal mesothelioma. This study led to several gene therapies clinical trials for peritoneal patients.

While gene therapy does not currently offer a permanent cure for mesothelioma, it has shown promise in multiple clinical trials.

New Drug Combinations

Researchers are experimenting with different drug combinations when it comes to cancer treatments. For example, many surgeons have added new drugs to already effective chemotherapy regimens. Other researchers are looking into combining

Obstacles to a Cure for Mesothelioma

Thanks to researchers the future is looking much brighter for people diagnosed with mesothelioma, but there are still a several hurdles we must cross on the road to a cure.

Because mesothelioma is a rare form of a cancer, unlike the more common lung, colon and breast cancers, there is a distinct lack of awareness and research dollars.

Early Detection Would Have Big ImpactThe biggest problem with a lack of mesothelioma awareness — among the general public and medical community — is that too often doctors don’t get a chance to treat a patient in an early stage of the cancer. The insidious nature of the disease is that symptoms may not be painful or even noticeable to the patient during early stages. Symptoms often mirror those of less serious health issues, slowing the diagnosis while the disease is spreading.

If a patient is not diagnosed until stage III or stage IV of cancer development — meaning it has already metastasized — treatment options are much more limited. This may disqualify patients from certain treatments, such as surgery, and it can make it harder for patients to participate in clinical trials.

“The real gains will be made from finding it (mesothelioma) earlier,” said surgeon Harvey Pass, M.D., a long-time leader in mesothelioma advancements. “Treatments will work better. It could be very important in turning this into a chronic illness.”

Funding: Major Issue for Mesothelioma Research

The National Cancer Institute (NCI) provided $9 million in funding for mesothelioma research. This amount pales in comparison to the federal funding many other cancers receive. For example, NCI provided more than $367 million in 2013 to lung cancer researchers.

Although there are plenty of outstanding mesothelioma research proposals, which may contain the key to a cure, limited funds to support them has led to historically low rates of grant approvals.

Closer to a Cure than Before

Finding the absolute mesothelioma cure still may be years away, but finding a way to control mesothelioma has taken hold.

The six-months-to-live prognosis is no longer the norm at specialty centers with experience in treating this rare disease. Patients are living considerably longer today. It is no longer unusual to find a five- or ten-year mesothelioma survivor. There is hope.

Cara Tompot

Cara joined The Mesothelioma Center as Social Media Specialist in July 2015 to continue her mission of making a difference in world. Every day, Cara speaks with survivors, caregivers and their loved ones in the online mesothelioma community to answer questions and offer emotional support. If you have a story idea for Cara or you’d like to learn more about social media, please email her at ctompot@

asbestos.com.


Compensation For Asbestos DiseaseTreatment Costs

In the last ten years there have been advances in treatment of asbestos disease, particularly

mesothelioma.

The chemotherapy drug, Alimta, was trialled extensively and the studies in respect of that trial show that there can be significant extension of life expectancy for those with mesothelioma who are treated with Alimta. Thankfully, after some significant lobbying, this drug is on the PBS scheme, which makes it very accessible for those with mesothelioma. It is a well accepted treatment.

A drug called Keytruda, which is an immunotherapy drug, has also been used in the treatment of mesothelioma. There has been great success in the use of Keytmda for the treatment of melanoma - skin cancer.

It is on the PBS for melanoma but not, at this stage, for mesothelioma. This raises the issue of how a person with mesothelioma can pay for the drug, as a course of treatment with the drug can be $50,000.00 or more, depending upon the number of doses that are given.

There has been dispute in some compensation claims as to whether or not Keytmda is an accepted treatment for mesothelioma and whether compensation for the cost of Keytmda should be awarded.

A recent decision of the District Court of South Australia in a claim brought by Mr Anthony Latz (Latz v Amaca Pty Limited - 26 May 2017) is very helpful for persons

with mesothelioma who are seeking to recover the costs of Keytmda in their claims.

In that case a South Australian District Court Judge awarded the sum of $25,000.00 for the cost of Keytruda. This was in circumstances where it was not certain that Mr Latz would be treated with the drug Keytmda, but the sum of $25,000.00 was awarded to reflect “the reasonable possibility that Mr Latz may take up the option of such treatment”. The Judge in that case noted that the drug, whilst not curing his disease, would, if successful, extend and improve the quality of Mr Latz’s life. It was also noted that the cost of the treatment would be in the order of $65,000.00.

No doubt in the future other treatments will become available and will be trialled for those with mesothelioma. The above decision acknowledges the importance of compensating those with mesothelioma appropriately so that they can take up novel treatments and try to extend their life spans and quality of life.

If you have any questions about compensation for medical expenses, please feel free to contact the Society.

Thady Blundell SOCIETY LEGAL ADVISER


New Evidence Suggests Radiation MayBoost The Power Of Immunotherapy In Mesothelioma Treatment, According To Surviving Mesothelioma

SCIENTISTS SAY RADIOTHERAPY AND IMMUNOTHERAPY APPEAR TO WORK SYNERGISTICALLY TO STIMULATE THE IMMUNE SYSTEM AND COMBAT ASBESTOS CANCER.

Doctors in Pennsylvania have released their report on the potential therapeutic value of

combining immunotherapy drugs with radiotherapy in the treatment of malignant pleural mesothelioma. Their study is the subject of a new article at Surviving Mesothelioma. Click here to read it now.

The University of Pennsylvania analysis looked at studies that combined immunotherapy drugs like Keytruda (pembrolizumab), avelumab, and nivolumab with radiation treatments to positively impact mesothelioma survival.

“The combination of immunotherapy and radiation therapy may allow for complimentary immunologic effects that can enhance antitumor response,”writes Dr. Evan W. Alley of the Hematology and Oncology Division at Penn Presbyterian Medical Center.

The article in Translational Lung Cancer Research recommends that more clinical trials be conducted on the combined effects of these two immunomodulatory therapies in the treatment of mesothelioma.

“If it can be shown that these two therapies can enhance one another’s effectiveness and boost mesothelioma survival, it could open up a new set of treatment options for patients who currently have few viable choices,” says Alex Strauss, Managing Editor for Surviving Mesothelioma.

To read more about the synergistic effects of immunotherapy drugs and radiation on mesothelioma tumors, see Immunotherapy and Radiation: A Powerful Mesothelioma Combo, now available on the Surviving Mesothelioma website.

Alley, EW, et al,“Immunotherapy and radiation therapy for malignant pleural mesothelioma”, April 2017, Translational Lung Cancer Research, pp. 212-219, http://tlcr.amegroups.com/article/view/13139/10997#B39

For more than a decade, Surviving Mesothelioma has brought readers the most important and ground-breaking news on the causes, diagnosis and treatment of mesothelioma. All Surviving Mesothelioma news is gathered and reported directly from the peer-reviewed medical literature. Written for patients and their loved ones, Surviving Mesothelioma news helps families make more informed decisions.


Your Digital Estate

Have you thought about what happens to your digital records after you die? And, do you own your audio

books or music collection on I tunes or Google?

I will deal with your e books and music first. Even though you may think you have bought these you actually don’t own them. In most instances, you are purchasing the licence for personal use only. This means that you cannot transfer ownership of the files from your id to another person

Most of us have many on line accounts such as email, bill accounts, social media, shopping accounts, photo and video sharing accounts, on line storage accounts, websites and blogs. We also have purchased and downloaded many books, magazines and music. Also, many of us store our photo’s digitally now as well.

I am talking about any information or data that is stored electronically, whether stored on line, in the cloud or on a physical device.

Something needs to happen with all of this after you are gone. If this is not dealt with it leaves a bit of a mess for your family and potential opens the door for identity theft.

So, you need to identify any hardware such as computers, external hard drives, USB sticks, tablets smartphones, music players, eReaders, digital cameras and other digital devices and list them out, as well as any software programs.

How many bills do you pay on line, or how many shopping accounts do you have? Do you use Social Media?

All this information needs to be listed out. Once you have done this you need to decide what you want done with your digital assets. It may be time for a clean-up of some of your files and accounts!

In today’s world, we now need what they call a Digital Executor. This person helps manage your digital estate or information once you are gone.

To carry out this role the executor will need to be able to access your digital estate. Some people may already use a password manager program. This will mean that you will only need to share the log in for that account. If not, it is important to record your information. You need to write down what you want done with each account that you have listed eg some may be deleted, some archived, some transferred to family members. Some may in fact have a monetary value and you may need to instruct your executor that these assets need to be handled a separate way.

The privacy and security criteria for your accounts will determine if another person can access your information.

In some instances, they may require a copy of your death certificate. Some do allow for authorised agents.

You may like to attach your instructions to your will.

Gathering this information will take a while and will need to be kept updated on a regular basis.

Some simple steps to take:1. Make a list of your digital assets eg mobile phone,

digital camera, tablets…

2. Make a list of or any accounts that you manage on line. This includes any domain names.

3. Write down the website address along with your login and password details. Please note that banks do not allow you to record your PIN unless it is adequately disguised.

4. Next is to list all your music, eBooks, photos and videos and list the platforms on which they are stored as well as any log in details.

5. If you have cloud storage of for files and documents, you need to list the website link and include your password details.

6. Social media sites are next eg Facebook, Instagram etc. these sites quite often record a large part of your life and your family may think that this is worth keeping. Some of these sites do provide for archiving or memorialising your information. Please note down the login and password.

7. You need to record this information in a document or spreadsheet, recording the following for each account:

• Name of Account • Account number • URL • User name • Password • Security question and answer • Current activity (eg telephone is automatically

debited on the 12th of each month) • Notes what to do with your account after

you are gone8. Decide where you are going to store this information

eg with your lawyer, in an encrypted program, in a locked safe

9. Decide who your Digital Executor will be.

10. Talk to your Digital Executor tell them where to find the information.


New Clinical Trial Offers Hope ForPatients With Hard-To-Treat CancerCaused By Asbestos

PATIENTS WITH A HARD-TO-TREAT TYPE OF CANCER ARE BEING GIVEN NEW HOPE IN A GROUNDBREAKING CLINICAL TRIAL.

Researchers at the University of Southampton and the University of Leicester are trialing a drug that

could boost the body’s immune system to fight off mesothelioma, which can be caused by asbestos.

The trial will be one of many to be conducted at the University of Southampton’s Centre for Cancer Immunology, which will be the UK’s first and only center dedicated to cancer immunology research.

Mesothelioma rates are rising. Since the late 1970s, mesothelioma incidence rates have increased almost sixfold (497 percent increase) in Great Britain. There were around 2,700 new cases of mesothelioma in the UK in 2013 more than seven cases diagnosed every day.

Current treatment methods include chemotherapy, radiotherapy or surgery and are mainly aimed at keeping the cancer under control.

The phase III randomized controlled trial, which is funded by Cancer Research UK and supported by Bristol Myers Squibb, will test whether nivolumab, a drug already used to successfully treat advanced melanoma and advanced kidney cancer, can be used to target mesothelioma.

It works by finding and blocking a protein called PD1 on the surface of certain immune cells called Tcells. Blocking PD1 activates the Tcells to find and kill cancer cells.

The trial has been launched ahead of International Clinical Trials Day, which is marked on 20 May each year, but this year has events taking place today (Friday, 19 May).

Professor Gareth Griffiths, the study’s coChief Investigator from the Southampton Clinical Trials Unit at the University of Southampton, said: “The UK has one of the world’s highest incidences of mesothelioma and currently there aren’t many ways to treat it. Boosting the immune system by releasing killer Tcells that have previously been blocked could offer us a new way to treat more patients with this devastating diaease.”

The trial, which is being run in collaboration with the clinical lead Professor Dean Fennell at the University of Leicester, plans to recruit 304 patients, who have relapsed mesothelioma, across 20 UKwide sites including Southampton and Leicester.

Professor Fennell said:

“Preliminary studies targeting PD1 in mesothelioma have shown promising activity. CONFIRM aims to definitively assess the true benefit of nivolumab for patients with relapsed mesothelioma in a setting where there is an unmet need. Critically, we aim to understand why patients respond (or not) to this drug, and identify biomarkers to ensure that we can personalize therapy to maximize the benefit for patients.”

One person who has already benefited from using the immune system to fight mesothelioma is Mavis Nye, who was diagnosed with the disease in 2009. After various courses of treatments which failed, she joined a phase 1 immunotherapy trial to test the drug (Keytruda) on how well it blocked the PD1 protein and enabled the body to fight off a number of cancers, including mesothelioma. After the first two years, scans revealed the tumors had decreased by 81 percent, with three disappearing completely. Mavis is now cancerfree and spends her time raising awareness about the importance of clinical trials.

She said: “I was just an ordinary woman whose husband worked at the dockyards in Chatham. We didn’t know what the effects of the asbestos on his clothes might be. Cancer is a terrible and devastating disease that turns everything on its head. I am so thankful that the trial I took part in worked. But it didn’t work for every participant.


We need more trials to help improve treatments and survival rates for cancer, and this new trial is a big step in the right direction.” Dr. Catherine Pickworth, Cancer Research UK’s science information officer, said:

“Immunotherapy treatments work by turning the power of our immune system against cancer. They are already being used routinely to treat advanced skin and kidney cancers, and are showing promise for other types of cancer too. This clinical trial will find out whether an immunotherapy drug could benefit people with mesothelioma, which is hard for doctors to treat successfully. We urgently need trials like this to help improve survival for patients with this aggressive type of cancer.”

The construction of the Centre for Cancer Immunology is expected to be completed by September and aims to be in full operation in summer 2018. It will bring worldleading cancer scientists together under one roof and enable interdisciplinary teams to expand clinical trials and develop lifesaving drugs.

The Centre, which is based at Southampton General Hospital site, is being funded by a £25 million fundraising campaign by the University of Southampton.

Professor Tim Elliott, Director of the Centre for Cancer Immunology, said:

“The University has made major advances in tumor immunology and immunotherapy over the past 40 years and we enjoy a strong reputation for our ‘bench to bedside’ approach. The new Centre will go a long way in helping many more people with cancer become free of the disease, and we hope this

new trial to fight a particularly sinister type of cancer will be the first of many successful trials.”Source: www.southampton.ac.uk


Educating School-Leavers On AsbestosDangers Is One Way To Reduce Rate OfDeadly Exposures

THE EXTENSIVE COVERAGE IN SATURDAY’S ADVERTISER OF THE PLIGHT OF TWO MEN NOW DYING FROM MESOTHELIOMA PROVIDES YET ANOTHER STARK REMINDER OF THE LETHAL CONSEQUENCES OF EXPOSURE TO ASBESTOS, WHETHER AT WORK OR AT HOME.

Sadly, it reflects the reality that asbestos mortality in Australia continues on its upward trajectory. This is

despite a nationwide asbestos ban implemented by the Howard government in 2003.

By 2020, it is estimated that 20,000 Australians will have died from asbestos-related diseases.

This tragic body count stems from Australian industry’s extended 20th century love affair with asbestos.

Thanks to its incredible versatility and low cost, asbestos was widely viewed as a ‘‘magic mineral’’ and for several decades this ethos was seamlessly woven into the fabric of the nation’s economic psyche.

Its deadly side-effects, though, were conveniently ignored, denied or discounted.

Consumption boomed as vast amounts of asbestos and asbestos-contaminated products were mined, manufactured and imported.

Australia became one of the world’s highest per capita users of asbestos. The flip-side is that we now have one of the world’s highest rates of asbestos-related death.This is by no means the end of the story. While the 2003 ban has been an important breakthrough, the fact remains that much of the asbestos from the pre-prohibition era is still in play.

Asbestos is rife in tens of thousands of homes built prior to the late 1980s. Public buildings — including schools and hospitals and countless other workplaces — also contain asbestos- contaminated products.

Illegal asbestos imports from China, India and elsewhere, as well as the DIY home renovation revolution, are additional, more recent, complications.

These ‘‘legacy’’ asbestos issues pose a major challenge for governments and the community.

As part of our response to this dilemma, the Asbestos Diseases Society has for several years been organising asbestos awareness workshops for at-risk groups in the community.

High school students in Year 10 and 11 thinking of working in the building and construction industry are the number one priority.

Young workers lack experience and are especially vulnerable when it comes to working with asbestos. Education is vital, especially so in an industry with such an unenviable track record in preventing asbestos fatalities.


So far, over 2000 students in both metropolitan and country schools have completed their workshop training.

The workshops cover the different types of asbestos and their potentially lethal health effects.

A strong emphasis on assisting students in how to identify asbestos-contaminated products likely to be encountered in both the residential and commercial sectors of the industry is another important consideration.

Asbestos awareness courses are being given to school-leavers thinking of working in the building industry.

The vital obligation of employers to provide rigorous asbestos risk assessments to ensure safe systems of work is also highlighted.

While there are limits on what can be achieved with one-off two-hour workshops, a critical upside has been the very positive feedback from the students.

They get it that exposure to airborne asbestos is dangerous. They also get it that safety is the key, and are eager to learn more.

When it comes to asbestos diseases we all know prevention is far better than the alternatives. Getting in early to provide asbestos awareness before students start paid employment gives them a head-start to

safety. It is an investment in our children, their health and their future.

Most importantly, it may also assist in creating a new legacy, where the young building trade workers of today no longer become the asbestos victims of tomorrow.

Dr Kevin Purse is the President of the Asbestos Diseases Society of South Australia and an Adjunct Research Fellow with Central Queensland University.

Kevin PurseThe Advertiser


September 11: Death toll could rise bymillions from ‘toxic’ asbestos dust

THE DEATH TOLL FROM THE SEPTEMBER 11 TERROR ATTACK COULD SOAR INTO THE MILLIONS AS A RESULT OF THE TOXIC DUST THAT BLANKETED NEW YORK CITY WHEN THE TWIN TOWERS COLLAPSED.

Residents have already started to develop cancers caused by the asbestos-filled ash that erupted from

the World Trade Centre skyscrapers, and a leading health expert has warned it will only get worse.

“In 15-20 years we are going to see a serious health issue here in New York. We haven’t even seen the tip of this iceberg yet,” Dr Raja Flores, Chief of Thoracic Surgery at the Mount Sinai Hospital, NY, told nine.com.au.

“There’s almost nine million people in New York… a lot more people may have been exposed (to asbestos fibres) than we first thought. It contaminated a huge portion of the city and that entire population was exposed,” Dr Flores said.

The most infamous terror attack in modern history killed more than 2700 people when two aircraft hit the World Trade Centre’s north and south towers on September 11, 2001.

That death toll also included the innocent lives of those who died when another plane hit the Pentagon, and a hijacked plane crashed into a field near Shanksville in Pennsylvania.

However, the true scope of the attack may only start to be understood due to the dust and debris that scattered across Manhattan and Brooklyn.

Hidden in the dust was more than 400,000 kilograms of asbestos, mercury, fibreglass and benzene.

It was inhaled – in varying doses – by almost everyone in the city.

Last weekend, hero US firefighter Ray Pfeifer died from brain and lung cancer that was linked to his work at Ground Zero.

Pfeifer was one of many emergency servicemen and women who spent more than eight months cleaning up the wreckage of the World Trade Centre.

Dr Flores - considered one of the world’s leading experts in pleural mesothelioma and asbestosis – said while downtown Manhattan copped most of the dust, anyone in the city at the time of the attack and the days that followed were potentially exposed to deadly asbestos fibres.

“There are a lot of people now who are having respiratory issues and we are starting to see more cancers,” he said.

“People are already getting sick from the asbestos and they have died from it. If I had to bet my house, in 15-20 years we are going to see a serious health issue here.

“I think you will probably see double or tripling of the number of lung cancers in people who were in New York City on 9/11 and mesothelioma and people dying of pleural fibrosis from asbestosis.”

People covered in dust walk over debris near the World Trade Center in New York. (AAP)

Pedestrians flee the dust-filled area surrounding the World Trade Center. (AAP)


The New York surgeon objected to reports that only first responders and people in the vicinity of the World Trade Centre were at risk of developing lung cancer, warning the US may be a few years away from a catastrophic national health crisis.

During the construction of the World Trade Centre, the Port Authority of New York and New Jersey originally planned to use more than five million kilograms of asbestos in the buildings.

Its controversial installation was halted in the 1970s after a link was proven between asbestos fibre exposure and lung cancer by Dr Irving Selikoff from Mt Sinai Hospital.

However, by that time almost half a million kilograms of the deadly insulation had already been sprayed in the first 40 storeys of the buildings.

“It’s one of the most dangerous substances around. Every day I operate (I see) patients that have been affected by asbestosis. The safe amount of asbestos in the air for someone to inhale is zero. There’s no safe amount,” Dr Flores said.

“The entire city was blanketed, especially downtown and Brooklyn. You went down there months later and you still smelt it. That dust was still around for a very long time.”

Dr Flores’ grim prognosis for the people of New York comes from a comparative study he undertook in the town of Libby, Montana, where the asbestos used

in the World Trade Centre was originally mined and manufactured.

His study investigated the contaminated vermiculite mines in the region and the local population’s exposure to tremolite asbestos.

More than 400 people in the town of 2,656 have died from asbestos-related illnesses since the 1990s.

“It’s common sense that what happened in Libby will start happening to the people in New York. That’s frightening and it’s a big deal,” he said.

However, Dr Flores’ prediction is not without its detractors.

A 2012 New York City health study published in the Journal of American Medical Association dismissed links between the noxious dust released from the Twin Towers’ collapse and the development of cancers.

The study examined 55,700 people who were in the vicinity of the World Trade Centre during 9/11 and in the weeks that followed.

The paper revealed 1,187 people (439 rescue/recovery workers and 748 general public) had been diagnosed with three different types of cancers between 2007 and 2008.

The research assessment concluded that while “the presence of carcinogenic agents raises the possibility that exposure to the WTC environment could eventually lead to cancers,” the link between the two could not be substantiated.

Dr Raja Flores warned New

York could face a health epidemic with the number

of cases of asbestos related

lung diseases expected to soar.

Dust-covered 9/11 survivor Marcy Borders died of stomach cancer in 2015. (AFP)

Lower Manhatten was covered in asbestos-filled dust after 9/11 which blew across the entire city and over to Brooklyn. (Getty)

People take cover as a dust cloud from the collapse of the World Trade Center envelops lower Manhattan. (AFP)


Former New York City health commissioner Dr Thomas Farley said it was still too early to establish a link between 9/11 and cancer during a 2012 interview.

“Cancers take 20 years to develop and we might see something different 20 years down the line,” he said.

Dr Flores warned children exposed to the dust in the days following the terror attack had a much greater risk of developing cancers and severe pulmonary diseases.

“The main option you have if you’ve been exposed is to get screened. A low dose CAT (CT) scan once a year to see if you have asbestos changes in your lungs,” Dr Flores said.

However, the surgeon warned that even with a screening there is no treatment.

Dr Flores has accused property owners and bodies with vested economic interests in New York of “sowing doubt” about the dangers of asbestos and how widespread the September 11 exposure really was.

“My concern is people – property owners, asbestos companies and people that are worried about getting sued - are playing down the harms of asbestos. Asbestos kills, we know that,” he said.

“They try to influence the population by sowing doubt, saying it’s ‘not that bad’ or that there are ‘safe levels’ you can be exposed to. That’s all BS and lies because they know it will take 20-30 years for it to manifest itself and kill people.”

In a 2012 Tweet, current US president Donald Trump claimed the World Trade Centre wouldn’t have collapsed if there had been more asbestos in the buildings.

“If we didn’t remove incredibly powerful fire retardant asbestos and replace it with junk that doesn’t work, the World Trade Center would never have burned down,” he wrote.

In 2010 the Zadroga Bill was signed into law by former US president Barack Obama to provide free medical treatment and compensation to first responders of the 2001 terrorist attack.

While the bill has provided invaluable medical assistance to thousands of law enforcement and

emergency personnel, it does not cover the rest of New York’s general population, who according to Dr Flores have already started to develop asbestosis and lung cancers.

The New York surgeon said an immediate change to the Zadroga Bill is needed to cope with the still-developing aftermath of 9/11.

“We need legislative change to start saving some lives and I think we can save more lives with the pen than with my knife,” he said.

The September 11th Victim Compensation Fund (VCF) was created in 2001 to provide compensation for any anyone killed or injured in the attack or during the lengthy clean up that followed.

The program – which covers pulmonary diseases and 58 types of cancers - expired in 2004 but was extended until 2020 by Obama.

It has already paid out more than $9.4 billion in exchange for a legal agreement that victims won’t sue the airlines for negligence.

Dozens of law firms in New York have been inundated with applications since the program started, with many devoting staff and entire sections of their websites to the 9/11 victims.

Nine.com.au has contacted numerous US law firms who confirmed they are dealing with hundreds of cases of victims impacted by the terror attack.

James Gorman

Dust blanketing downtown Manhatten and moving across New York after the twin towers collapsed. (AFP)

Firefighters work beneath the destroyed mullions, the vertical struts which once faced the soaring outer walls

of the World Trade Center towers. (AAP)

First responders fleeing a dust cloud after the collapse of the World Trade Centre. (AFP)


Complaints Policy

THIS POLICY OUTLINES THE STEPS THAT ARE TO BE TAKEN SHOULD A MEMBER OF THE ADSS COMMUNITY WISH TO RAISE A CONCERN OR LODGE A FORMAL COMPLAINT.

ADSS aims to provide a high quality and timely service to our community. Should anyone in our community

have concerns about ADSS or our services we would like to hear about them as soon as possible in order that the issues can be addressed in a timely way.

Should a member of our community wish to lodge a formal complaint about any aspect of our service, the matter will be taken extremely seriously. We aim to satisfy our supporters, volunteers and clients and to respond to any problems as quickly as possible.

Why should I complain?

The public has the right to expect the very highest standards from ADSS. You should complain if you do not consider we are meeting these standards or if you are not satisfied with any aspect of our service.

How should I complain?

Many complaints are best discussed locally with the individual concerned. However, if the complaint cannot be answered to your satisfaction, please phone or write to our Chief Executive Officer.

The Chief Executive Officer will take the details of your complaint and arrange for an investigation to take place.

Should the matter involve the Chief Executive officer then the Board Chair or another Director should be contacted.

A complaint can be made verbally, by email or by mail. The complainant shall receive acknowledgement upon receipt of any complaint.

We will endeavour to provide you with a detailed response to your complaint within 10 working days.

Investigation:

Should a complaint be made relating to an individual, particularised details of the complaint shall be recorded. The principles of Natural Justice shall apply and the respondent shall have the opportunity to see the compliant and provide a response.

Should the complaint relate to our Service providers the same process will apply.

Advocates or Support Person

ADSS welcomes the complainant utilising an advocate or support person to assist them raise their issues with ADSS.

ADSS Response

Should a member of our Community lodge a complaint or raise a concern with ADSS they should receive a formal response. However, from time to time the member may not be happy or accepting of the response. Should this occur and the matter is unable to be resolved, then a representative from ADSS will be made available to attend a mediation session with the complainant.

All matters raised and their outcome shall be reported to the Board of Directors.

Other Avenues:

Queensland – Office of the Health Ombudsman

Northern Territory – Health and Community Services Complaints Commission

New South Wales – NSW Government Health Care Complaints Commission

Records:

A record of complaints must be kept and filed in the records management system. Complaints will be reported to the Board of Directors at a Board meeting. The privacy of the people involved shall be maintained always.

Access:

This procedure shall be displayed on the ADSS Web site and incorporated into other relevant member publications.

Amended 14 April 2017


User Rights and Responsibilities

ADSS is a member based, not for profit charity that provides primarily a telephone support service for

people with an asbestos related disease, their family and or carers. In providing this service ADSS staff work within a Code of Conduct and their professional Code of Ethics. We aim to provide a service that promotes the privacy, dignity, self-esteem and independence of our community members. You have the right to be treated with respect at all times.

All new referrals to ADSS will be assessed by our Services Support Officer or in her absence the Chief Executive Officer. In consultation with the person or their carer the needs of the sufferer will be determined and a program of assistance will be implemented.

Only financial members of ADSS are entitled to a home assessment and assistance with energy conservation. This service is provided by DOTS Occupational Therapy Services. Referrals to this service are on a needs basis. ADSS, with the member’s consent, make a referral to DOTS who will arrange for an Occupational Therapist to contact the member and arrange a suitable time to visit.

Once the assessment is completed a report is provided to ADSS who will discuss the recommendations with you. With your consent this document will also be sent to your treating GP. In some cases, follow up appointments can be authorised with ADSS. Should the OT identify needs outside of our scope, you may self-fund the services or the Support Officer can work with you to find alternative means of funding that may assist you.

ADSS also has an arrangement with the University of Queensland Dietetics Clinics. Once again based on need, members who require advice on nutrition and diet are able to either visit a clinic or have a telephone consultation through the clinic. ADSS sends the clinic a referral and they contact you and arrange an agreeable time. This clinic does utilise students who are overseen by a Lecturer to ensure the quality of advice. The advice is in line with the nutritional advice guidelines developed by UQ in conjunction with ADSS.

Both assessments can take up to two hours each.

The Services Support Officer can also advise you on any other services that may be appropriate to your needs.

Primarily their role is one of support. In some case this support may be supplemented by a volunteer who will keep in contact to see how you are going. Should there be a change in your condition or your needs then you will be referred to the Services Support Officer.

ADSS also works in conjunction with a Privacy Policy and a Complaints Policy both of which are available at www.adss.org.au

ADSS aims to have face to face contact with our members at least once a year via morning teas that are held across our area of coverage. However due to the size of the area that ADSS covers this is not always physically possible. The aim of these morning teas is to assist members to create their own networks and diminish the sense of isolation that some people may be feeling.

We also hold a Symposium in Brisbane once every two years to update people on the latest medical research. This will be soon extended to the Northern Territory.

As victims of asbestos exposure many of our members will potentially have a legal claim. On this basis the ADSS Board has appointed Turner Freeman Lawyers to assist our members with a free consultation to determine whether they have a claim or not. Any ongoing relationship is between the member and their lawyer.

Some members choose to utilise another law firm and we respect the right of people to do so, this does not affect any other services provided to you.

From time to time we find that members may experience a need for financial assistance whilst their legal claim is being finalised. This may be for equipment, travel of their partner to medical appointments or any manner of necessary things. In these instances, ADSS may be able to assist with a welfare loan. A form is required to be signed ensuring that the money is paid back to the ADSS upon the finalisation of your legal claim.

ADSS communicates with our members through a quarterly newsletter that is posted to you, this is where you will find event information, research advice and commentary on what ADSS has been up to.

ADSS ethos is for our members stay at home as long as possible and as independent as long as possible. Staff and our health providers care about our members and we would therefore ask that you treat them with respect at all times.

13 June 2017


THE SOCIETY AT WORK

April 9 – ADAO Conference in WashingtonMarch 28 – Ipswich Morning Tea

March 22 – Helen, Stana, Helen & Bev – Volunteers, Autumn Newsletter Mail out

March 17 – Brisbane Home Show

April 28 – Workers Memorial DayApril 28 – Workers Memorial Day

May 01 – May DayMay 01 – May Day

May 13 – Roma Show

May 01 – May Day

May 31 – Bribie Island Morning Tea

June 06 – Maroochy Morning Tea


April 9 – ADAO Conference in Washington

March 22 – Helen, Stana, Helen & Bev – Volunteers, Autumn Newsletter Mail out

April 28 – Workers Memorial Day

May 01 – May Day

May 13 – Roma Show

May 01 – May Day


June 06 – Maroochy Morning Tea

May 20 – Charleville Show

May 01 – May Day


June 06 – Maroochy Morning Tea – Norma Nicholson & Rose Ferreira

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

Shine Lawyers

Slater + Gordon Lawyers

Thunderbird Demolition

United Voice

Workplace Health & Safety Queensland

XY Vending

Corporate Members

Thanks to QLD Health for providing funding to ADSS to help carry on our services.

winter 2017 newsletter - adss › ... › adss-winter-newsletter-2017.pdf · 2017-12-12 · winter...

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