Lou is back! On wonder drug Keytruda!

Formula 1 Australian Grand Prix boss Ron Walker credits the Keytruda cancer drug with saving his life Photo: Chris Hopkins

Australia has become the first country in the world to register the cancer drug that former Melbourne lord mayor Ron Walker credits with saving his life.

The Therapeutic Goods Administration has registered Keytruda for treatment of patients with advanced melanoma.

The drug, which has not been listed on the Pharmaceutical Benefits Scheme, is expected to cost about $150,000 a year.

Peter MacCallum Cancer Centre's Grant McArthur said more than 1000 Australians battling advanced melanoma each year could need the new drug.

"It is essential that these patients are able to access Keytruda on the PBS as soon as possible," Professor McArthur said.

Australia has the highest rate of melanoma in the world, with 31 people a day on average diagnosed with the cancer.

Clinical trials funded by the manufacturer Merck found Keytruda was more effective than existing advanced melanoma treatments.

Results of the trial, which involved 834 patients in 16 countries including Australia, were published this week in the New England Journal of Medicine.

Businessman Ron Walker travelled to the US to join a trial of the drug in 2013, and has been lobbying for Keytruda to be made available in Australia. 

The above article is about the drug Keytruda , also known as Pembrolizumab.

Merck has also signed agreements with rivals Pfizer, Amgen and Incyte to test MK-3475 in combination with other oncology drugs across a variety of cancers. and the results are doing so well. (Same drug as our UK mesothelioma warrior Mavis Nye is on and having amazing success with for pleural mesothelioma).

Pembrolizumab (Trade name Keytruda formerly lambrolizumab; also known as MK-3475) is a drug marketed by Merck that targets the programmed cell death 1 (PD-1) receptor. The drug is intended for use in treating metastatic melanoma. Pembrolizumab was invented by Gregory Carven, Hans van Eenennaam and John Dulos at Organon Biosciences which later became Schering Plough Research Institute and then Merck & Co.

Lou's latest

Thursday 9 April was a turning point in my progression of this cancer to being handed a life saving drug that will hopefully stimulate my immune system, shrink tumour progression and give me more quality of life and lots more living to do!

Thursday 9 April admitted overnight at Epworth hospital in Melbourne where I had my first 3 weekly dose of wonder drug Keytruda that is showing great promise with mesothelioma in trials around the world in shrinking tumours.  Unfortunately as the drug is approved in Australia however not on the free list it is very costly for us with each dose.   Intravenous just like chemotherapy treatment for approx one hour with by the time other drugs are administered as well.  That evening seemed to be okay.  Day 2 and day 3 at home I felt like I had been run over by a bus - total fatigue, no energy and no appetite to eat anything plus nausea thrown in too.

Day 4 - I felt like I was dying, unable to get out of bed due to total fatigue, weakness and high temperatures hovering around 38 degrees including sweats.  On portable oxygen most of the day.

Day 5 to Day 10 - Extreme fatigue, nausea once or twice a day, oxygen most of the time and lack of energy.

Day 11 and Day 12 - Extreme fatigue oxygen on and off (not as frequent though) and in between feeling slightly improved.

Day 12 evening I started to come good - less oxygen needed, still fatigue however I am finding slowly I am able to do a couple of things before fatigue overcomes me - like being on the computer and doing my blog!  Appetite slowly returning.

My next treatment will be Thursday 30 April overnight stay in hospital.  Hopefully by then I will be feeling less fatigued, appetite good and my immune system will be stimulated and improved.

Lou's 60th birthday

April 20 I turned the big 60.  I had a big celebration party 10 year's ago when I turned 50 thinking if I get past my dad's death aged 54 yrs in 1985 from pleural mesothelioma that I would be a lucky girl!  Little did I know that I would be celebrating in style my 60th on Sunday and Monday with family and dear friends!

Photos coming.

Lou's health update - PEMBROLIZUMAB

Firstly to the cynics out there .... I am not dieing .... dying just yet!

A visit to my oncologist on Wednesday evening revealed that my weight is plummeting 47.8 kilos at the moment and dropping.  So Twiggy eat your heart out!!  I am going down hill and yes slowly dying ... being in my 12th year living with pleural and peritoneal mesothelioma and I am writing the truth as mesothelioma cancer once it gets a control there is no stopping it.  My tumours in the linings are gradually joining up ... basically forming like a lump of hard concrete crushing my organs and my breathing until literally my last breath!  Eventually pain will be unbearable and it will be just a matter of time then before I die.

HOWEVER I have been thrown a lifeline!  My oncologist has said there is a new drug PEMBROLIZUMAB available in Australia that hopefully will work in treating patients with malignant mesothelioma, a cancer of the linings around the lungs (Pleura) or abdomen (peritoneum).  Monoclonal antibodies, such as pembrolizumab, work by blocking a protein called programmed cell death 1 (PD-1) which may stimulate an immune response and kill tumour cells.

My oncologist, Allan Zimet has said hopefully I will get 18 months maybe more time with having it, if I do not have it then I will die probably in a few weeks - simple as that.

Catch is - it is new and not on our free drug list so we will be up for quite a few thousand dollars with every dose, every 3 weeks (at this stage 3 doses with a scan in between each one).

There is excellent reading about this drug on clinicaltrials.gov
Pembrolizumab in treating patients with malignant mesothelioma
March 2015 - University of Chicago - phase 2 trial (not open to participant recruitment yet).

Last week another wonderful survivor of pleural mesothelioma in Australia and who is also seeing my oncologist, Mary Heddles started on this new drug, so far extreme fatigue has been her biggest side effect.  Good luck Mary - looks like we will be on the trial together.

I will keep you informed.  As Allan says - I am a responder to treatments!


This week it is Global Asbestos Awareness Week.

http://www.asbestosdiseaseawareness.org/archives/32330

Posted on March 31, 2015

“I Will Not Die in Vain” – Louise’s Story

Lou Williams, Australian Director, Global Ban Asbestos Network (GBAN); and Social Media Awareness Officer, Asbestos Diseases Foundation of Australia (ADFA)

I want to start this blog with the facts. I’m dying from mesothelioma. But I refuse to die in vain. If there is one wish I have, it’s that the main legacy of asbestos warriors like me will be that we helped create a foundation for a global ban on asbestos. I lost my father to it. I’ve attended over 60 funerals of victims who died from asbestos disease. Enough is enough.

Since my father was first diagnosed in 1985 at the age of 54, dying less than a year later, I was determined to do something to make a difference. Since my own diagnosis in 2003 and subsequent battle with meso, I have continued my passion for global awareness and unity. Only in unity can we truly ban this horrific and lethal mineral.

As I write this, enjoying each moment of each precious day – which have become even more precious to me as I reach the final stages of my journey – I am struck with hope. I still have hope that we will one day, in the not too distant future, see a world without asbestos.

Global Asbestos Awareness Week is coming up April 1 – April 7.  As the Australian Director of theGlobal Ban Asbestos Network (GBAN), Social Media Awareness Officer of the Asbestos Diseases Foundation of Australia (ADFA), and volunteer for the Asbestos Disease Awareness Organization (ADAO), I am passionate about how powerful this effort really is. Asbestos knows no geographic boundaries. It doesn’t discriminate. It is a killer. And it’s time to stop it in its tracks.

There are a series of presentations and many opportunities to get involved over the course of this week. I want to share the “Top Five Asbestos Facts” –  as they  highlights some of the most important facts about asbestos and why we need a ban:

FACT 1:  Asbestos is a known human carcinogen and there is no safe level of asbestos exposure.

FACT 2:  Only 55 countries have banned asbestos. The United States and Canada are the only two industrial western nations not to ban asbestos.

FACT 3:  Top 4 asbestos producers reported by USGS in 2014 are:  Russia (1,050,000), China (400,000), Brazil (291,000), Kazakhstan (240,000) *metric tons.

FACT 4:  More than 107,000 people die each year from asbestos-related diseases.

FACT 5:  While promising research continues, prevention remains the only cure for mesothelioma and other asbestos-caused diseases.

I will not die in vain. Asbestos, one day your funeral will also come, and it will be a time for rejoicing and bidding you a very hearty farewell.

Remember, there is power in unity. And with unity, we will one day see a global asbestos ban.

With Love,

Lou Williams

HAPPY EASTER/HAPPY PASSOVER TO ALL.

Enjoy your easter break.

Update on Lou, Barry Robson (ADFA) award and ADAO Tributes for ADAO's 11th annual Asbestos Awareness Conference.

I have been keeping pretty close to home lately as my immune system, health well being and fatigue needs some TLC (tender loving care) to get stronger.  Weight has been dripping off me - no ounce of fat anywhere - lol not a good way to diet!  We went to Woodend yesterday for an outing - Woodend is about 20 minutes from here - a beautiful country village setting.  We sat outside at the lovely little Austrian cafe Schatzi's, an Austrian word meaning sweetheart or darling, is a café restaurant situated in picturesque Woodend nestled in the heart of the Macedon Ranges.  Sitting outside we ordered green tea for me, latte for Keith and grandma's traditional homemade apple shortcake.  Upon our cake arriving the European wasps started swarming around the food.  They have become a menace in most of Victoria particularly at the moment during Feb and March.  After a lovely sit in the sun and afternoon tea minus the wasps lol I was glad to get back to the car, have a short rest while Keith went to get a few supplies at the local supermarket then home for a short rest and recuperate.

A story in the local paper recently.
HARDWARE stores are running out of traps and baits as European wasps invade Sunbury and the Macedon Ranges.

On a visit to hardware stores in Sunbury and Kyneton, Leader found limited supplies left to repel the pests.

Pest control company Protech confirmed it had received numerous calls to remove wasp nests, including one property in Gisborne where eight nests were removed.

Manager Muzi Tsolakis said wasps were the worst they have been for several summers.

“They are everywhere.”

“They are a dangerous pest and we recommend that anyone observing wasps coming and going from an area to not try and deal with it themselves.

“Call a professional and get the nest removed.”

Macedon Ranges Council has received several inquiries from residents.

The invasive pest has also been spotted at cafes, restaurants and public events.

Council’s community safety manager Anne-Louise Lindner said to minimise risk residents should pour drinks from cans and bottles into glasses and inspect food before consuming during barbecues and picnics.

.......................................................................................................................................................

Barry Robson (president ADFA Asbestos Diseases Foundation Australia) today received an well earned award.  Congrats Barry and to Kate being his backbone assistant).  Congratulations to Barry Robson on becoming 2015 Blacktown City Senior Citizen of the Year.

Barry has given a life time commitment to serving the community.  During his working life he helped workers through his involved with the Maritime Union of Australia and he also served as a Councillor on Blacktown City Council.  On retiring he just became more busier through volunteering his time. Barry is the President of the Asbestos Diseases Foundation of Australia and is also actively campaigning to retain vital cardiac services at Mt Druitt Hospital.  Barry has been supported by his wonderful wife, Kate, who is also an active volunteer in the community.
Congratulations Barry, a truly worthy recipient of the Award.

 — at Bowman Hall Blacktown.

..........................................................................................................................................................

This is my Australian tribute page for ADAO's 11th annual asbestos awareness Conference to be held in Washington, DC, April 2015.  Suzanne Howarth​ Mary Heddles​ and Lorraine Langdon Villalba​ are 3 very brave and amazing super Australian Warriors who like me, are living with mesothelioma.  Thank you to ADAO, Marilyn Amento​ and Linda Reinstein​ for helping this wonderful Australian Tribute page come together.

Lou's recent scan results after radiation and closer to an asbestos ban in USA

Hi all

After a few days of fatigue and resting I am now sitting at the main computer ready to type this blog.

Last Tuesday 10 March 2015 I had a blood test and CT scans for stomach, pelvic and chest with intravenous dye.  Blood test went smoothly, the scan not quite to plan.  The hour prior to the scan it is a requirement to drink 1.5 litres of water - with nausea it went through me quite quickly clearing out my system lol! An hour delay and then trouble inserting the needle for the dye as my veins are quite depleted due to the years of chemo and tend to collapse at the best of times.  However it went okay and home to wait for my oncology visit Weds evening to see Dr Alan Zimet (11 March).

My oncology visit with Dr Zimet - Blood tests showed red blood cells depleted (haemoglobin 9.2) and also very very anaemic so an urgent blood transfusion of 2 units blood was ordered for Friday morning (13 March).  This is a pretty good result considering the last 4 units of blood transfusion (when haemoglobin was 7.6) was mid January so this one combined with extensive radiation in that time has lasted 2 months.  I had the blood transfusions yesterday - 5 hours all up - so pretty quick.  The day chemo staff all know me at John Fawkner Hospital in Melbourne and have followed my journey since day one.  They are all a unique and wonderful bunch of nursing staff whose care of the patients is paramount in ensuring that they are comfortable from the time they walk in the door to the time they leave.  It is the same with the Oncology ward - since day 1 of my journey in 2003 they have been there all the way (some oldies and of course some new nursing staff along the way) all devoted to the care of the patient being their number one priority.

Scan results - No real change since last scan in mid January when it was the very serious scan with not so good results.  Dr Zimet said that it was too early for this scan (4 weeks after finishing radiation). The radiation is still working slowly and will take another 4 to 6 weeks before anything shows up on another scan.  The tumour piercing into the stomach appears to have grown slightly in one of the measurements and shrunk slightly in another measurement!  So still pretty danger stage with tumours/fluid/stomach/arteries/blood vessels and we are now on a watch and come back for a visit in 3 weeks.  If anything presents itself prior to that - have a blood test and ring Dr Zimet/hospital.  I am improving each day although the fatigue is still my No. 1 friend!


Flying still not approved until the next blood test (in 3 weeks) appointment with Dr Zimet ... so unfortunately my plans to attend ADAO's 11th Annual Asbestos Conference in Washington DC as a speaker and mesothelioma warrior has been cancelled!  This year the Conference will be made extra special with the recent announcement this week in America with the Legislation introduced by Sens. Barbara Boxer, D-Calif., and Edward Markey, D-Mass., to fix the nation’s badly broken and outdated chemical safety law would be a major step in ensuring that Americans, especially children, are protected from toxic substances.

The Boxer-Markey bill, titled the Alan Reinstein and Trevor Schaefer Toxic Chemical Protection Act, would correct major weaknesses of the 1976 Toxic Substances Control Act, or TSCA. It would ensure that all chemicals be proven to pose a “reasonable certainty of no harm” -- the same standard required for pesticides on produce and food chemicals.

CLOSER TO AN ASBESTOS BAN!!! U.S. Senator Barbara Boxer, pictured here with ADAO President and Co-founder Linda Reinstein, and her beautiful daughter, Emily, signed a copy of The Alan Reinstein and Trevor Schaffer Toxic Chemical Protection Act. ADAO has been at the forefront of working with Congress to get asbestos banned. This is why ADAO needs your donations!! So our children, and grandchildren will never have to suffer from mesothelioma and other asbestos-related diseases.

Linda Reinstein and ADAO released this press release 13 March 2015.
PRESS RELEASE - http://bit.ly/1NPU9Gw  These past eight days moved fast. Sen. Boxer called me last Tuesday asking to name her TSCA reform bill after Alan and all of the hundreds of thousands of "Alans." The new Boxer-Markey bill, "The Alan Reinstein and Trevor Schaefer Toxic Chemical Protection Act", will update the outdated 1976 TSCA bill and empower the EPA to finally ban asbestos and regulate an estimated 80,000 chemicals. This would not be possible without all of our supporters, volunteers, donors, and sponsors – Congratulations to all! I can say with sincerity that when Doug Larkin and I co-founded ADAO in 2004, that neither the Larkin nor the Reinstein families could have ever envisioned a day when a piece of legislation aimed at reforming our laws to influence a ban on asbestos and seek to further our education and awareness mission - would be named after one of our loved ones who influenced our founding. We are humbled by this bill's introduction that names all asbestos victims and their families in spirit and showcases the power of our united efforts to end the tragedies associated with asbestos. Special thanks to Kimberly Starr Cecchini - who spent HOURS in the last 48 hours working on press releases and communication.

Lou is fighting fit ... almost! James Hardie asbestos fund to be topped up by NSW Government, Australia SHAME!!

Hi all, it seems a few weeks since I have done a blog - a couple of times I have almost felt like using the main computer to do so, however the dreaded post radiation exhaustion has won out until now!

Next Monday it will be 4 weeks since I completed my 2 week cycle of radiation.  In that time nausea and fatigue have been the biggest battles in my healing.  I have just about overcome these and I am almost back to feeling pretty normal!  Still fatigue creeps in after doing the most basic of tasks ... when this happens I know it is my body saying to me - go and have a rest and heal.  When the weather is nice like it has been the last few weeks I look forward to this resting on our front veranda, lying on the sofa with mobile by my side (just to check emails/facebook/test/phone messages) with Charlie (our siamese cat) sharing the sofa with me and enjoying the sunshine, birds singing and feeding and our garden with huge gumtrees in the background and ever changing sky colours.  Very still, relaxing and peaceful - perfect for my body/immune system to heal.

Tuesday 10 March 2015 in Melbourne I will have blood tests followed by CT scan for chest/abdo/pelvis.  Followed by a visit to my oncologist Alan Zimet Weds evening 11 March.  Great to receive virtually instant results.  The following week a follow up appointment with my radiologist who will be able to look at the recent scans and compare with the previous ones prior to radiation.  I feel good about the latest treatment and know the radiation has done its magic!

27 February 2015 NSW Government released this statement to the press and general public.

The NSW government will extend funding to asbestos victims in case of a shortfall in funds from James Hardie Photo: Bloomberg
Read more: http://www.smh.com.au/business/taxpayers-to-cover-james-hardie-asbestos-shortfall-20150227-13quzk.html#ixzz3TSNUuiP6
The New South Wales government will extend further credit to the Asbestos Injuries Compensation Fund to prevent victims being paid in instalments in the event payments from James Hardie Industries are insufficient to cover claims.
On Friday the NSW government said it has agreed to amend the terms of its loan facility with the AICF. The changes extend the term of the loan and allow the fund to draw down the full $320 million of the facility rather than $214 million previously stipulated.
The AICF warned last year that a spike in mesothelioma claims, the most expensive asbestos victims claims category, could force it to enter an "approved payment scheme" as of July 1.
The scheme, which would have allowed compensation to be paid to some victims in instalments rather than upfront due to a lack of funds, sparked outrage among victims groups.
On Friday the AICF said the loan changes mean the APS is no longer needed, but conceded that "such a scheme may become necessary at some future date".
"With these changes to the loan facility, it will not be necessary for AICFL [Asbestos Injuries Compensation Fund Limited] to proceed with its previously announced intention to implement an approved payment scheme," the fund said.
The Australian Financial Review first reported on the potential funding shortfall in September last year.
The AICF was formed in 2006 as part of the Amended Final Funding Agreement.
The AFFA was struck between James Hardie and the NSW government to compensate victims suffering asbestos-related diseases due to contact with former products made by James Hardie subsidiaries.
Under the terms of the agreement James Hardie, a supplier of fibre cement building products, pays 35 per cent of its annual operating cashflow to the AICF.

Eileen Day, Asbestos Diseases Foundation of Australia (adfa) commented about this article on the  Asbestos Diseases Foundation of Australia facebook page.  HOW TRUE IS THIS STATEMENT!
"Once again Hardies is being lent money to keep the Compensation Fund going. Yet they gave their shareholders dividends. When are they going to say sorry for the thousands of lives they have destroyed!"

My response to Eileen's posting - "Hardies will never be sorry! They are murderers of thousands of innocent asbestos victims and will continue to be for many years to come. Shame on you Hardies!"


Barry Robson, President Asbestos Diseases Foundation of Australia (adfa) recently made a statement in the recent February adfa monthly Newsletter prior to the above announcement by the NSW Government to prop up the fund for Hardies.

No news from the NSW Liberal Government after adfa met with Attorney General Brad Hazzard on 2 very important issues.

First the Strikwerda where widows are at a disadvantage over compensation payments and secondly the James Hardie saga where the company has said they will not top up the fund which utterly means that the fund will go into slow decline and victims may then be paid in INSTALMENTS. This can not be allowed to happen!

Hardies have just announced that they are on track to make a profit of $235 million dollars.  If James Hardie can find half a billion dollars to hand over to shareholders, and $11 million dollars a year just for their CEO, surely they have an obligation to ensure every victim of their deadly asbestos products is properly compensated.

We ask the question of why has the NSW Government not got stuck into the company over this shortfall and stand up to Hardies and DEMAND that they TOP UP THE FUND!

The Attorney General Brad Hazzard has reassured adfa that he will get onto this poste haste, but NOTHING seems to be happening.

ALL TALK!  Well I intend to remind the Attorney General Brad Hazzard that the election is less than 40 days away.

I am sure they do not want adfa members back out on the streets demonstration once again about the lack of ACTION FROM THE GOVERNMENT!

Barry Robson,
President, Asbestos Diseases Foundation of Australia (adfa)

Lou's comment to Barry Robson's statement - I gladly will be on the streets demonstrating with adfa if the need arises!  James Hardie cannot get away with this AGAIN!









 

Lou's radiation course finished. Lou almost back on board!

Where do I begin!  Recent blog saw results not that good and an immediate course of radiation was needed to shrink the 20cm tumour that had pierced thru pleura into stomach creating a very dangerous situation.   I survived ... shall I say we survived the 10 days ... 14 day stay, as Keith was with me all the way - living, breathing and having to put up with my highs and lows when various meds would kick in, plus anxiety etc of the situation took its toll on both of us.  Trying to stop the nausea and pain was a huge priority and luckily a visit to see Stephen Vaughn part of my oncology team promptly within a few days did this, to the point of taking the meds religiously for a couple of more weeks until the radiation does its magic - a big thank you Stephen for making our life much improved.  Both much improved especially the pain management.  While there I quickly became very fatigued however was able to in between catch up with a few close family and friends.

We stayed near the Epworth hospital, Richmond in East Melbourne and enjoyed the beautiful surroundings including Fitzroy Gardens when I felt up to a walk.  By end of the 2 weeks I was again lol looking for park benches to lie/sit on.

There is no place like home!  Charlie (our beautiful siamese cat) was just to happy to have us home - he quickly told us very vocally, then became clingy until he felt comfortable after a few days that we were home to stay.

While we were in the Epworth hospital 2 beautiful and brave warriors were there at various times - Mary Heddles and David Shaw.  We met on the Monday morning at the little cafe downstairs in the hospital for a catchup - Lou, Keith, Mary and her husband Martin and Coral Shaw as she had received the good news that David was being released to come home that day after a long stay in the hospital to manage his pain.  It is with sad news that I received a message from Coral the next morning to say her beautiful warrior, soulmate and husband passed away that morning.  David got his wish to go home - I am so glad that wish was granted.  Unfortunately I could not attend his funeral as it was my last day of radiation and both were being held at 1pm.  I was there in spirit holding Coral and Catherine's hands.
 A beautiful picture of Coral and David.
RIP David you truly are a brave warrior xx

Last week saw Keith and myself with an appointment at a holistic funeral parlour in Woodend
called NaturalGrace.  They are all over Victoria.  Website - NaturalGrace.com.au
We are holistic funeral directors integrating end of life, after death and funeral care.
Authentic, sustainable and beautiful choice offered by compassionate, experienced and gentle professionals.

We both came away from there emotionally drained however at peace and to be able to plan our  own funerals our way is such a relief.  It does not mean that I am going to die tomorrow, it just now means that we both know exactly when the time comes we will be at peace with the arrangements in place.  So we can now place this in a folder and file away!  I have chosen a beautiful wicker basket (slightly shaped like a coffin) with rope handles on the side.  Notelets attached with string to the basket where everyone can write what they would like to say at the funeral.  This will be a keepsake for Keith to look at during his time of grieving.

I am so pleased through my local doctor who had attended one of these services recently at a friend's property (my funeral will be held at our home) and highly recommended the genuine warmth and harmony.  Also thanks to my beautiful neighbour who happened to mention this green/environmentally friendly funeral directors when I mentioned my wishes.

To all the beautiful warriors doing it tough around the world - my heart goes out to you.  Sending you a rainbow of love, strength and smiles.

Lisa Singh asbestos scourge needs Commonwealth leadership

Lisa Singh is a Labor Senator for Tasmania and co-chair of the Parliamentary Group on Asbestos Related Diseases. (PGARD).  Lisa's article below published in the Canberra Times 12 Feb 2015 appeals to the Commonwealth Government of Australia to take a more active approch with our asbestos scourge.
http://www.canberratimes.com.au/comment/ct-editorial/asbestos-scourge-needs-commonwealth-leadership-20150212-13af71.html

Asbestos scourge needs Commonwealth leadership                                      

Australia has one of the highest global rates of asbestos-related diseases and now that the Abbott government has effectively abandoned affected Australians, it's time for the Commonwealth government to step in, writes Lisa Singh.

Time to take action: Asbestos is a national problem and requires a national solution. Photo: CRAIG ABRAHAM

More Australians die each year from asbestos-related diseases than the number of our fellow citizens killed in road accidents.
The fact that Australia is a nation of home renovators, along with our enthusiastic mining and usage of asbestos up until 1990, explains in many ways the shameful situation that Australia has one of the highest global rates of malignant mesothelioma. This rate will keep rising until at least 2020.
Asbestos, highly toxic, very insidious and frustratingly persistent, has already affected thousands of Australians. No one doubts it will affect thousands more.
It was this devastating reality that drove me to co-found the Asbestos Free Tasmania Foundation in 2010 and, along with my colleague Russell Broadbent MP, to establish the Parliamentary Friendship Group on Asbestos Related Diseases (PGARD) as a forum to enable parliamentarians to come together to raise awareness of, and to help prevent the burden of, asbestos-related diseases.

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It is the Commonwealth government's responsibility to help all Australians under the gun of asbestos.
This is a responsibility the Abbott government has not been swift to accept.
As we have seen this year in the ACT and are discovering in NSW, the curse and threat of asbestos is frighteningly real for many families. We have read and heard testimony from families in the ACT who are paying mortgages on houses they will never enter and are frightened for their children who may develop mesothelioma.
All they have been offered by the Abbott government is access to a loan on which the ACT will be required to pay interest. Is it any wonder that ACT citizens feel abandoned by Tony Abbott?
In the meantime NSW families still await their fate.
All of this further demonstrates that the scourge of asbestos is a national problem and therefore requires a national solution.
The Asbestos Safety and Eradication Agency, established by Bill Shorten in 2013 when he was Minister for Employment and Workplace Relations, is a key part of that national solution and critical to delivery of the national strategic plan for asbestos management and awareness.
This is evidenced by the extraordinary success of the First International Conference on Asbestos Awareness and Management in Melbourne in November, which was hosted by the Asbestos Safety and Eradication Agency.
Delegates and stakeholders from across Australia discussed the big issues facing them in raising awareness about the dangers of asbestos in work and domestic environments, and how they can be managed into the future.
But, as was so clearly demonstrated at the conference, the agency still has a lot of work to do in order to bring about the essential change needed at all levels of government. Work that will never be done if the Abbott government abolishes the agency, as the Commission of Audit prescribed.
It is incumbent upon Senator Abetz, my fellow Tasmanian and Tony Abbott's Minister for Employment, to publicly guarantee the protection of the Asbestos Safety and Eradication Agency from the blades of the Commission of Audit, and to make that guarantee soon so the agency can carry on its hard but indispensable work.
Mesothelioma is a cancer which is almost uniquely caused by exposure to asbestos fibres. There has been a particular spike in the number of cases of mesothelioma, an incurable cancer caused by asbestos. This disease is devastating and requires costly medical care.
The rise in the number of Australians being diagnosed with asbestos-related diseases makes any potential funding shortfall extremely concerning. Unfortunately, we have been warned of exactly such a shortfall by the Asbestos Injuries Compensation Fund (AICF).
The AICF was established to ensure James Hardie adequately compensates victims of diseases related to its products.  The fund confirmed last year that it could run short of money as soon as 2017.
Quite rightly, asbestos support groups like the Asbestos Diseases Foundation of Australia led by my friend Barry Robson are outraged and confused by this news.
The shortfall is due to the rising number of Australians who are suffering and dying due to James Hardie's asbestos products. Claims in recent years have been higher than expected.
The AICF may seek approval from the Supreme Court to pay victims by instalments to avoid the shortfall.
As Barry Robson has said;
"Asbestos victims don't die in installments, they don't lose the ability to work or care for themselves in installments, yet James Hardie wants to see them compensated in that way.
In my opinion it is clear that resolving the shortfall requires James Hardie to accept its clear moral responsibilities by paying into the fund amounts that more closely match asbestos claims.
To quote Barry Robson again:
"If James Hardie can find half a billion dollars to hand over to shareholders, and $11 million a year just for their CEO, surely they have an obligation to ensure every victim of their deadly asbestos products is properly compensated."
However, if James Hardie is found shirking, then it seems likely that the AICF will call upon the loan agreement with the NSW and Australian governments to top up the amount of funds available to ensure victims are compensated in full.
Once again, the onus lies squarely upon the shoulders of Senator Abetz. On behalf of the Abbott government, he must step up and give the many present and future sufferers of asbestos related diseases the modicum of assurance it is within his power to provide.
He must immediately reassure sufferers – who will be absolutely dependent on insurance payments to help them and their families deal with their disease – by confirming that the Abbott government is prepared to release the loan monies if, as and when necessary to ensure that all claimants are guaranteed the financial support they will need when they need it.
Lisa Singh is a Labor Senator for Tasmania and co-chair of the Parliamentary Group on Asbestos Related Diseases.