Living With Mesothelioma -My Diary- I have met a Africian Hedgehog. We say Good Night to another Mesowarrior

Ever had one of those days where you get up an then out of the blue you have a full day.

My friend mentioned on my Camping Forum she had to come to Herne Bay to deliver a hedgehog –yes a hedgehog.

She is involved with African Hedgehogs. They are here as pets and they can be so neglected so she rescues them and fosters them


The rescue was founded by Colin Bradbury in 2009 in light of his foresight that it would soon become a very real need due to the increased popularity of our spiney friends. However, the rescue truly belongs to the hedgehog community as a whole and relies on the generosity of its supporters to keep functioning. We believe that its important for our existence to continue to ensure that our actions do not adversely effect the already stressed rescue centers out there, especially the native hog rescues who are already under a lot of pressure and in most cases not familiar with exotic hedgehog care. We strive to ensure that we always have the best interests of the animals we love so much at the centre of our thoughts. If we can manage the unfortunate hogs that are in need of help within the community then we shall go a long way to helping the breed and the future of exotic pet hedgehogs in the UK.

So we messaged and arrange to meet in the Harvester. This we did and I met the sweetest little Hedgehog mind you it was like stroking a scrubbing brush.

Viv rescue the poor thing and she was in a very bad way. She fostered her and bought her back to good health and found her a forever home her in Herne Bay.

Viv already has one of her own and has had so many pass through her home as she nurses them back to health.

She writes a diary for them and she wrote this.

Hello everybody, it’s me again, Bracken, with some exciting news. Tomorrow I’m going to my new home by the seaside. A lot has happened since I spoke to you last; I should have told you before now.

Four weeks ago my new mum, Collette, and her son Tyler came to visit me. They stayed overnight so Collette could give me my medicine and see how good I am at taking it. Well, I am now because I have only one lot to take, but I have to admit I was a bit naughty that time and ended up wearing some of it. Not for the first time though, it’s one of my little tricks. I quite like the one I have to take now, Loxicom (it’s like Metacam) so I’ll be a good girl. I was a bit naughty before I had my medicine as well because I did a big wee while I was sitting on Collette’s knee. At least that’s what she told everyone as she rushed off to change her jeans. We animals get the blame for everything.

My foster mum and my new mum agreed with the rescue that I could move to my new home when my vet was happy with me. He told my foster mum to stop giving me Tramadol then if I was still ok to try stopping the Loxicom . Stopping the Tramadol was alright, I felt fine, ate all my food and played my favourite game of walking round my playpen with a toilet roll tube stuck on my head (or wobbling in my case), but when she stopped the Loxicom I didn’t feel so good. I didn’t eat much and I didn’t want to play. So now we know what I need for the moment.

The vet has recommended a vet who he knows near my new home and he’s going to tell him all about me. I’m going to visit the new one soon so he can meet me and see how good I look now that I have spines and I’m not scabby. My bendy legs are because I have something called spondylitis. That won’t get better but my meds stop it from hurting me. You can see how good I’m looking in the photo although Mum said she’s sorry the photo’s a bit fuzzy. She took lots but I’m so excited I just can’t stay still. I know you’ve seen the other photo before, the one of me when I came into the rescue. I couldn’t open my eyes properly and I was very frightened and sad. It was easy taking photos then because I hardly moved at all.

I’m very excited about going to my new home but I’m a bit sad at leaving here. My foster mum will come and visit me and my new mum can come back here to visit and maybe she’ll bring me with her so I can see my friends Kat, Lexi and Hartley (if Hartley hasn’t escaped by then). I’m going to come back for my holidays in August.

I hope I’ll be allowed to use the computer in my new home so I can tell you all about it. Must go and pack my things now so I’ll be all ready for tomorrow. Bracken x



Viv popped him in a carrier with a heat pad underneath as they must live at 22C as if they get cold the might hibernate and they are not made for that so they die. I have learnt so much today about these sweet creatures.

So there we were sitting in the Harvester with this little cage and the baby asleep.

Collette, and her son Tyler joined us with their carry bag and they already have a little hedgehog so they have two now and we had a chat until we had to go as Collette had to go and fee some horses. so we bid farewell and went shopping and that was the day gone.

Well it was different. I have seen something new today.

When i got home I had the sad news of the passing of a Mesowarrior. His Wife Pat messaged me. “My husband David died of Mesothelioma this week aged 71. He was ill for 18 months! Another life taken too soon!
Im really so sad as Pat has always been there encouraging me even though her husband was so ill.
Peace, my heart, let the time for the parting be sweet.
Let it not be a death but completeness.
Let love melt into memory and pain into songs.
Let the flight through the sky end in the folding of the wings over the nest.
Let the last touch of your hands be gentle like the flower of the night.
Stand still, O Beautiful End, for a moment, and say your last words in silence.
I bow to you and hold up my lamp to light you on your way.

Living With Mesothelioma -My Diary- British Lung Foundation Will be Celebrating 30years in July 2015

Well what has happened to our weather. We have had so much rain today after a lovely sunny start the black clouds rolled over and dropped all the rain the held. It was running down the windows like a river. Crazy.

We still went to the car to take the dog out to the park, well I keep my sweets in the glove box and I love popping one in my  mouth.

Vintage Woman, Polka Dot Dress, Laughing, Attractive

We did manage to get around the Park but the wind wasn’t very nice and even im my winter coat it was freezing,

It was a quieter day today now the EAF conference is over and people are returning to their homelands

Seems there was a lot of mutual business done and ideas shared so these will unravel in the future.

Yvonne shared this with us —

Professor Nico van ZandwijkThis is the Dr. J. Stumphius Recognition Award of the European Asbestos Forum, presented by Hans van der Wart of Shield Group International to Prof. Nico van Zandwijk (ADRI), who could be a Nobel Prize candidate for discovering a potential cure to mesothelioma. Showing many people lifting a burden together, the award perfectly represents the EAF motto: Sharing makes us stronger.

On finding more info I was surprised that Australia has a  purpose built Asbestos Diseases Research Institute in Sydney.

Research interests

Professor van Zandwijk’s major research interest is in thoracic oncology. He founded the department of Thoracic Oncology at the Netherlands Cancer Institute and was head of department from 1985 to 2008. His department was the first to study mediastinal staging, locoregional chemotherapy and photodynamic therapy in malignant mesothelioma. In 2007, Professor van Zandwijk was asked to become the inaugural director of the purpose built Asbestos Diseases Research Institute in Sydney. Over the years he has been involved in many clinical trials, translational research and mentoring more than 20 students who have become research leaders in the own right.

So many wonderful people out there working away at finding the answers.

We received an email from the Saatchi Bill Headquarters

Following the General Election and the state opening of Parliament the Medical Innovation Bill is to be reintroduced into Parliament.

A ballot was held on the evening of the state opening to determine the order of introduction of private members’ bills in the following days and weeks.

The Medical Innovation Bill is 28th in the queue and is due to be introduced into the House of Lords on June 8th 2015.

There is no guarantee that the Bill will get very far. There is a lot of competition for Parliamentary time and the majority of Private Member’s Bills do not progress to become Acts of Parliament.

Many thanks for all your support and interest in the Bill to date. We’ll keep you updated on the Bill’s progress.


House of Lords Private Members Ballot

This will start the pessimists nattering again and rising on twitter but I would rather be a pessimist and say Well done and lets get in for the fight.

British Lung Foundation

I had another email to cancel the Date at the House of Commons June 23 with the British Lung Foundation but they have moved it to July 16th, I have to move my drug day to the Wednesday, so a busy week but it will be worth it .

The BLF will still be launching the most comprehensive overview of lung disease in the UK currently available, and the research being published will mark the 30th anniversary of the BLF. This will include lung disease rates and data specific to your area.

The launch will now take place at 4-6pm, Tuesday 14 July, in Terrace Dining Room A, House of Commons.

We would be delighted if you could still attend.

The event will be hosted by Dr Sarah Wollaston MP, and attended by parliamentarians, clinicians, researchers and officials. This new research will be a milestone in our understanding of the nation’s lung health.

Formal invitations will be sent out shortly.

30years is a huge achievement and they grow all the time

Campaigning for the future

This year is the 30th anniversary of the BLF. We will renew our determination to make a difference to people living with a lung condition and campaign for positive change in the nation’s lung health. Our focus will remain on COPD, lung cancer, mesothelioma and IPF.  We will campaign to increase people’s awareness that feeling out of breath is something they need to take seriously and get checked out.

Stopping people getting lung disease remains a priority. We will push to ensure that laws on standardised tobacco packaging and the ban on smoking in cars carrying children are introduced, and that more is done to tackle smoking rates throughout the UK.

We will also continue to press for sustainable funding dedicated to mesothelioma research. It is unacceptable that the UK has the highest rate of mesothelioma in the world and there is so little research, even though there is no cure.

More support for IPF

Our IPF project will build on a successful first year. We will increase the number of BLF support groups, improve the reach of our health information, and campaign to raise awareness.

Helping children affected by lung conditions

Children’s lung health will be a new priority for the British Lung Foundation. We’ll start by consulting parents and health care professionals, and then plan how to raise awareness, provide information, and support families.

Continuing our research for better lung health

Over the past three decades, we’ve spent more than £24 million on scientific research into a wide range of lung conditions. In the next 12 months, we’ll start to put our new research strategy into action and aim to invest more in research in the future.

We’ll also conclude a major study to evaluate the nation’s lung health. This will draw together, for the first time, comprehensive information about respiratory disease across the UK. We will share findings and use them to campaign for improvements.

Bringing everyone together

We’re welcoming new trustees to our board to better represent people living with a lung condition and the wider health care community.  Their experiences and point of view will have a big impact on our work and help us to carry out our ambitious plans in the years ahead.

We will strive to improve our support for everyone affected by a lung condition and to raise funds to support this important work.

But we need you to get involved. We could not do all that we do without you.

Thank you.

Find out more about what we achieved together in 2013-14 by checking out our

annual report.

Penny Woods is our chief executive and is passionate about working on behalf of patients, from personal and family experience.
The best bit is saved until last
They are publishing my trial tomorrow

In a report of a proof-of-principle study of patients with colon and other cancers for whom standard therapies failed, researchers at the Johns Hopkins Kimmel Cancer Center say that mistakes in so-called mismatch repair genes, first identified by Johns Hopkins and other scientists two decades ago, may accurately predict who will respond to certain immunotherapy drugs known as PD-1 inhibitors. Such drugs aim to disarm systems developed by cancer cells to evade detection and destruction by immune system cells.

Results of the trial with pembrolizumab, marketed as Keytruda, will be presented at the American Society of Clinical Oncology 2015 Annual Meeting and published online May 30 in the New England Journal of Medicine.

“This study gives us a solid clue about how immunotherapy may work in and how to guide immunotherapy treatment decisions based on the genetic signatures of a cancer rather than class of cells or organ of origin,” says Luis Diaz Jr., M.D., an oncologist at the Johns Hopkins Kimmel Cancer Center, a member of the Ludwig Center at Johns Hopkins and the director of the Swim Across America Laboratory at Johns Hopkins.

“Defects in genes are found in a small percentage of many cancer types, and this type of biomarker for immunotherapy response could apply to tumors containing errors in other DNA , as well,” says Dung Le, M.D., an oncologist at the Johns Hopkins Kimmel Cancer Center. “Using a predictive biomarker can help us direct the use of immunotherapy drugs to who are more likely to respond, avoiding giving people expensive and time-consuming treatments that are not likely to work or delaying the use of other treatments.”

For the Johns Hopkins-led study, scientists enrolled and treated 48 patients with cancer, primarily at The Johns Hopkins Hospital, and divided them into three groups. Other patients enrolled were from Providence Cancer Center in Oregon, the University of Pittsburgh Cancer Institute, Stanford University and The Ohio State University Comprehensive Cancer Center.

In one group of 13 patients with advanced colon and rectal cancers and mismatch repair gene defects, eight had partial responses to pembrolizumab, meaning their cancers shrunk by at least 30 percent in diameter. Four patients had prolonged disease stability, and one patient experienced disease progression. In another group of patients with colon and rectal cancer who had no defects in mismatch repair genes, all 25 failed to respond. In a third group of 10 patients with a variety of other cancers that tested positive for mismatch repair gene defects (four with pancreatic/bile duct cancers, two with uterine cancers, two with small bowel cancers, one with stomach cancer and one with prostate cancer), one patient with uterine cancer had a complete response, meaning there was no radiographic evidence of their cancer, five had partial responses, one had stable disease and three patients’ cancers progressed.

All patients had received and were no longer responding to previous therapies.

“It’s rare for patients with colon cancer who have failed all standard therapies to respond and most of them only have a few months to live,” says Kenneth W. Kinzler, Ph.D., co-director of the Ludwig Center at Johns Hopkins. “While it’s promising to see that patients with mistakes in mismatch repair genes responded more often to immunotherapy than those who did not have these mistakes, we need to test this idea in more patients and potentially earlier on in the sequence of therapies for these advanced cancers.”

Median overall and disease progression-free survival in the colon cancer group with mismatch repair-defect group have not been reached yet, since several patients in this group have continued to respond to the immunotherapy drug for more than 12 months. Median follow-up for this group is 36 weeks (ranging from five to 55 weeks). In the group of patients with colon cancer who lack the mismatch repair errors, median overall survival was 7.6 months, and median disease progression was 2.3 months. These patients were followed for up to 42 weeks. In the third group of patients with mistakes in mismatch repair genes, median overall survival has not been reached, and their median disease progression-free survival was 5.4 months after being followed for up to 42 weeks.

For the study, overall response rates and some disease progression-free survival rates were classified and assessed as “immune-related,” because patients often experience some tumor growth before shrinkage begins in those who respond. Typically, such initial tumor growth, also known as pseudo-progression, would prompt researchers to remove patients from a clinical trial, but scientists have recognized the temporary growth trend in immunotherapy trials and created new definitions of response to account for it, say the Johns Hopkins scientists.

The research team also accounted for differences in how long each patient had metastatic disease and his or her length of response to previous therapies.

Tests for mistakes in mismatch repair genes are commercially available and used routinely for newly diagnosed colon and endometrial cancer patients, according to Le. Pembrolizumab, sold by Merck, is approved by the Food and Drug Administration for certain patients with melanoma. The drug blocks a protein on immune cells called PD-1 and takes the brakes off of these immune cells so they can attack .

Its cost can reach more than $100,000 per year per patient, a cost that gives urgency to sorting out which patients stand to benefit and which do not.

Mistakes in mismatch repair genes, which occur in sporadic and hereditary forms of colorectal, endometrial, stomach, biliary tract, pancreas, ovarian and small intestine cancer, disable cells’ ability to repair errors in the DNA replication process, which triggers unchecked cellular growth, a hallmark of cancer. The mutations were first identified in 1993 by co-authors of the current study, including Bert Vogelstein, M.D., of the Ludwig Center at Johns Hopkins and an investigator for the Howard Hughes Medical Institute; Nickolas Papadopoulos, Ph.D., and Kenneth Kinzler, Ph.D., also of Johns Hopkins’ Ludwig Center; and Albert de la Chapelle at Ohio State University.

Two decades later, an idea for the current study took root when Diaz and his Ludwig Center colleagues met with other Johns Hopkins scientists who led one of the first large clinical trials of a type of immunotherapy similar to the one used in the current study. In it, a single patient with colon cancer in the trial responded to the drug when other patients with colon cancer did not. The search began, Diaz says, for why that one patient responded.

Diaz and his colleagues previously proposed that immunotherapy may work best in patients with more mutations in their cancer cells, because multiple mutations trigger production of more abnormal proteins in cancer cells and, in turn, may cause the immune system to mount a bigger response against cancer cells with more “foreign” proteins. Knowing that a small percentage of patients with colon cancer have errors in mismatch repair genes, which produce thousands more mutations in tumors than patients without the defects, they guessed that the lone responder in the earlier study had such error-prone mismatch repair genes, a guess that was subsequently verified when the team sequenced the genome of the patient’s tumor.

Living With Mesothelioma -My Diary- The EAF Conference went so well. Congratulations European Asbestos Forum

A very Happy EAF host and co-ordinater Yvonne Waterman – Waterman Legal after her First conference in Amsterdam

It really went well as the photos came in all day yesterday

It was great to see how many people from around the world collected together to share their knowledge with each other. You so much about each others countries and the Legislation they have in place to manage Asbestos.

The European Asbestos Forum aimed to improve professional networks and to exchange of knowledge regarding all matters related to asbestos. From Patients stories to the newest medical treatments and drugs.

It was focused on labour: remediation, best practices, limit values, raising awareness in the workplace, national and European policy, enforcement of regulations, comparing regulations, asbestos drama’s and major law suits etc.

Linda Reinstein gave a speech that bought in the way that families suffer through Mesothelioma. Here she talked about my trial and today I had a lovely message from a Dutch friend I have met before at the IATP Diner.

Dear Mavis, It was great to meet interesting people at the symposium yesterday. Actually I see forward to visit England again. Maybe next IATP. What I noticed yesterday, was that almost everyone knows you. Linda is a passionate speaker…

Bless him it was so nice to know this as I always think Im so in the background to all these experts.

But then again today I had another message

Your doing an excellent job about getting the awareness out there. Your extremely inspirational, knowledgeable and more importantly, you’re ‘real’. Some of the posts you do fascinate me, I don’t think we’ll ever know the true extent of asbestos and the sheer volume we have in the UK x

You two know who you are and I thank you so much. It gives me a boost as I just work away here in my office and just put out all that interests me and Im so glad you are finding it of interest. Ok I will carry on and lets work together to the rid future of Asbestos and the lack of knowledge and uniform the Legislation’s throughout the world so we are all working from the same rules.

Banning Asbestos from the future and treating Mesothelioma with the latest drugs so all people can keep their families together. We do this in the honour of all those that have given their lives so far lets have no more deaths it just has to stop. PLEASE. BAN ASBESTOS WORLDWIDE

An Excellent Video for Mesothelioma Published on Mar 26, 2015 Anna Nowak, PhD, University of Western Australia

Another one has been published which is dear to my heart it talks about DIY. It is an area that we can can control. We must be so careful as we pull walls down and do our own renovations and decorate. If you find Asbestos Stop and think of Take Five to stay alive.

Rays Blog

Living With Asbestos -My Diary- The EAF Conference is underway

conference hall
The hall where the first EAF Conference is taking place today.

The beautiful NH 5-star NH Krasnapolsky Hotel is located right in the heart of Amsterdam, on Dam Square, facing the Royal Palace and the National Monument. Rooms

The European Asbestos Forum aims to improve professional networks and the exchange of knowledge regarding all matters related to asbestos.

For 2015, the main theme will be focused on labour: remediation, best practices, limit values, raising awareness in the workplace, national and European policy, enforcement of regulations, comparing regulations, asbestos drama’s and major law suits etc. The newest medical and some shocking new epidemiological insights will be shared as well. Convivial closing drinks and an optional conference dinner will round off the day in style.

There are many speakers from around the world and as I know Yvonne Waterman and know her dedication to riding the world of Asbestos (a woman after my own heart) also know some of the speakers but some are new to me so Im really interested in the conference.

The program of the day

 This how the run conferences nowadays, different speakers in different rooms –I always feel I miss out as I love to hear all the speakers and feel they should run it over many days so that everyone gets to hear all the news from around the world.
So the scene is set and I will be waiting for all the reports and photos and I wish EAF all the luck for a successful conference.
The speakers have met and had a relaxing meal together
Shhh the conference is starting says Asbestos Hunter
 Asbestos Hunter reports though from his Hotel —Would you believe what I ran into right outside my hotel? Portions are under renovation and the waste is being hauled on an open trailer through crowded streets. Asbestos everywhere.This is today In Amsterdam ???

I said I would have walked past that and just thought it was bags of cement as I wouldn’t have thought that someone could do such a thing in this day and age but of coarse they do. Here is a blatant case of Asbestos being abused as it is daily.
Cutting corners and right in the middle of of a busy City. Then people wonder where they came in contact with Asbestos. Well over the years you have been contaminated where ever you are. Everyone must have it in their lungs. How will they ever be able to solve the Mesothelioma peak I fear the answer is there will never be a top of the peak to get the figures down.
I hope asbestos Hunter talks about this today it needs to be talked about and named and shamed.
Please keep safe keep your eyes open for Asbestos -report fly tipping !!!!

Yesterday a stupid tweet appeared on twitter

Asbestos poisoning ain’t nothing. I dusted off the top of the Shoprite Coke machines and I swear it’s just days until I die.

I couldn’t let that go and told the person off and said i would swap his lungs for mine any day.

This was picked up by others and the tweets grew. Today he has put

You make one joke about politics, everything is ok. Make a single #mesothelioma joke, and everybody loses their minds!!!

——- It would have been better if he had put an apology what a  uncaring person.

Living With Mesothelioma -My Diary- All the speakers are on their way to The European Asbestos Forum-Their first event

I havent sat down to write a blog over the  bank holiday but I think thats where we normally have always gone away. The idea of facing the blocked roads just put us off this time and I had a great idea of staying in the garden for a change. Hmmm it was so cold and cloudy and even rained. Our summer has not got going yet.

Ray was busy throwing out and bagging up all the junk we put in the shed. Once again I have closed my eyes. I would be saying “Oh no not that Oh no!!”

So I stayed in and worked on the computer. I did manage a good clean in the house but sat down now and again.

A bit each day soon tidies up in a Park Home.

So Louis walks round the park was all I did.

I seem to be living for the next Tuesday at The Marsden and my drug is all I live for.

Im noticing some side effects as I reach a year in June.

I have been scratching so take antihistamine and that has been good.

Tiredness. After I eat a meal I drop off so that’s 2 sleeps in a day and all night. So much is going on in my Lung with all the shrinking it must wear me out. As I havent anyone else to compare it all with I feel alone in this trial.

Linda Rheinstein has been very interested in the trial and she contact me as she flies to Amsterdam to the EAF Conference.

It would seem she is really going to mention me and my trial so as the results have been published I was able to share info with her.

I have kept a low key up to now but its really time to shout it from the roof tops.

I know its not for everyone it doesn’t work its magic on all but Im proving there is something right about Imunotherapy.

European Asbestos Forum-compressed


The European Asbestos Forum – 27th May 2015

I have been helping to advertise the forum around the world as it is the first one for

Yvonne Waterman Ph.D. LL.M.

Over the past fifteen years, Yvonne Waterman has visited and spoken at many asbestos conferences worldwide, learning all the time and wondering why so many countries have the same asbestos problems and at the same time haven’t a clue

I have met Yvonne on several occasions and know how dedicated she is to the Asbestos world.

ADAO interviewed her

Linda: Please tell me about the European Asbestos Forum 2015 (EAF).

Yvonne: I’m so excited to announce the first European Asbestos Forum (EAF) on May 27 at the NH Grand Hotel Krasnapolsky in Amsterdam. Right on Dam Square, the very heart of the Netherlands. It’s main topic for 2015 will be on the relationship between asbestos and labour, with different big topics already planned for upcoming years.

The EAF is a new type of international asbestos conference There will be information for all asbestos stakeholders – e.g. trainers, victims, lawmakers, asbestos removers and the legal community. While the main focus will be on Europe, there is to be much international interaction and speakers from other continents as well, with some twenty global top speakers and specialists, which include Dr. Richard Lemen, Eric Jonckheere, Tony Rich, and Linda Reinstein.

Linda: Why is the EAF called a Forum?

Yvonne: “Because it is vital that people come together internationally to get to know each other; only then can they exchange the highest levels of knowledge and understanding, awareness and policy. In that sense, the conference will also be like a forum.”

Like ADAO, Yvonne places great emphasis on the need for sharing and unity – and it all starts by simply first getting to know each other and networking, she says. The hottest news on asbestos developments will entice participants further to join the Forum.

Yvonne Waterman

Linda: What drives you to go to such great lengths?

Yvonne: “I have been to so many asbestos conferences all over the world for the past fifteen years… Every time, it makes me sad to see the same: each country valiantly trying to discover the wheel all over again, yet unaware that the neighbouring countries share exactly the same problems but have found different solutions. That just doesn’t work – typically, people don’t even know a single counterpart in neighbouring countries, never mind from further away. Untold resources and chances for prevention are wasted that way, too. But if we get together, we can pool our findings and discover far more efficiently what works best. That goes for remediation practices and safety codes, but also for methods to raise awareness of asbestos dangers, improving the speed of court proceedings, comparing compensations and treatments – you name it.”

Linda: What should participants expect?

Yvonne: “It will be a very interesting day with the best speakers, the most relevant subjects and lots of opportunities for everybody to talk to others over excellent food and drinks in beautiful surroundings. That always helps to get the mutual understanding going, ha ha! But seriously: the EAF will start from a high level, providing participants with the best speakers, the best specialists, the newest developments. I also want to involve everybody, from all walks of asbestos, be they victims, remediators, builders, installers or teachers, policy makers, doctors and epidemiologists, building corporations, trade unions, judges, insurers and employers. The yearly programs will endeavour to meet all their needs and interests by offering simultaneous sessions focusing and examining divers aspects of the main topic.”

Linda: What is the goal of your conference?

Yvonne: “Networking, learning and sharing knowledge cannot be achieved by a single attendance – it requires repeats. I know this from personal experience. So I want to make sure that people will come back and make the EAF a yearly fixture on their calendars. Ideally, in say ten years’ time and after as many Forums, we could ask the European Commission to standardize the best methods we have found by consensus in Directives, thus implementing them in all Member States and providing the best to everybody. Just imagine what a hugely time-saving step forwards that would be for Europe and what an example to countries where there is no ban yet.”

Linda: Yet asbestos is already banned in Europe by virtue of a Directive of the European Union in 2005, that all Member States have had to implement. So wouldn’t such a conference or forum be better held elsewhere than in the EU?

Yvonne: “Asbestos may be banned in Europe, but it is still there in huge quantities, posing an equally huge problem. It is still present in the workplace, in our homes, in the environment, causing death and despair. Banning in itself is not enough, not by a long shot. Banning doesn’t get the asbestos from the roofs and out of the wall cavities, it doesn’t provide treatment or fair recognition while the victim is alive. It doesn’t provide an answer what we should do with it and where we should leave it, either, once it is removed. It doesn’t train workers to be alert to asbestos, which means workers keep getting exposed, even despite the ban. The newest Member States to the European Union are terribly behind in asbestos measures, awareness and legislation. Half of all the world’s asbestos production and asbestos products are to be found in this one continent. We need to face up to these realities. I’d say there is plenty of reason to call it the European Asbestos Forum.”

Linda: Who really is the European Asbestos Forum?

Yvonne: “I feel that if you see the necessity of something, you have a duty to say or do something about it. In that sense, it’s just me for now, though I am acting as the founder and President of the European Labour Forum Foundation, which is the formal organizer. A foundation simply offers more possibilities for organising such a large event. I do have a lot of very experienced support though and I would and could not have considered going ahead without them… I consider ADAO to be a big, wise sister to the EAF; and I am very thankful for her support and sponsoring. Also, the English Independent Training Providers (IATP) set a good example of bringing all asbestos stakeholders in the UK together – I continue to learn a lot from them, too, and appreciate their kind sponsorship. And last but not least, my main sponsor, Shield Group International, believes in the EAF and gives me such wonderful backing and resources that I know I can pull it off. Expect a terrific event.”

Yvonne, ADAO is pleased to support your efforts and wish you great success at the European Asbestos Forum on May 27th!

Linda Reinstein

Information and registration for the European Asbestos Forum 2015 can be found online at

So its with great excitement I wait for tomorrows events.

Rays Blog catch up

Living With Mesothelioma -My Diary- We had an Earthquake today

Well We had a surprise when we began to read the papers and see the news that we had a Earthquake early yesterday morning. The dog had woke us up very early barking and running around but we calmed him down and I said to Ray dont worry must be a fox in the garden.

Later yesterday the news broke that we had an earthquake down south.

Pictures came on face book.

Felt locations map based on first 250 felt reports of the Ramsgate earthquake of 22 May 2015

It was big- East Kent has been struck by the biggest earthquake to affect the UK since 2007. The quake measured 4.2 on the richter scale shaking homes and waking people just before 3am this morning. The epicentre was 5 miles offshore south of Ramsgate and was felt as far away as Cromer in Norfolk.

Then last night this story appeared

Monster earthquake could hit Britain as new ‘super deep’ fault lines discovered

22:14, 19 April 2015

As well as the capital the regions most at risk are Kent and the Home Counties, Essex, and Scotland, according to reports

Danger: London and the Home Counties could be headed for a major quake following the discovery of some new fault lines

Britain could be headed for an earthquake strong enough to topple buildings as new “super deep” fault lines have been discovered under the Home Counties.

The fractures in the earth’s surface are linked to the San Andreas Fault which causes monster quakes in California.

The latest research shows that the much deeper and more intricate system of linked faults which could bring similar devastation to Britain.

According to reports, the regions most at risk are Kent and the Home Counties, Essex, and Scotland.

Oh dear its the first time I have heard about faults here in the UK.

So after all the jokes about “Did the earth move for you” life returned to a normal day.

Im still itching so the drug is really going along the same journey, as a forum Im in reports. After about a year the itching starts and I feel sick in this first week. Constipation is still a complication as well.

Ray keep s putting glasses of water in front of me as he promised the Doctor he would see I keep flushing my kidney.

We haven’t gone away for the bank holiday as the traffic will be so bad and Summer just hasn’t really got started this year.

What with Rays back and my treatment we are out of the habit of packing the Motor Home each week.

So we are going to have a weekend in the garden. Ray has been clearing out his storage box and now wants to clear out the shed.

We had a skip that was so easy to throw our rubbish out but now the days of recycle have interfered with that and we can only put our garden waste in it.

So we have to go to the tip in Canterbury where we have to sort all the rubbish and put in the right containers.

I do wonder about all this as we used to have landfill and they reclaimed land and turned them into recreational areas. We still have places this could be carried out.

So we will be watching (much to Rays Annoyance ) The European Song Contest. Like Marmite -You either love it or hate it .I love it although last year through me when the winner was a bearded lady.

Rise like a Phoenox for Sweden

I loved the song though as I love UK’s for this year


Good Luck

Demolition - The Wrecking Crew

A must watch on Sunday as I have linked up with the firm involved in the program and last week was about the demolition of Didcot Towers. A land mark we traveled past many times as we went to Oxford.

So Im not going to be bored for the Bank Holiday. But I do know I have to get out in the fresh air so I hope the sun comes out so we can do some garden living this weekend.


Living With Mesothelioma-My Diary-Rays Visit to the Tonometry, Horrific Asbestos Photos from Australia, and Mesothelioma Awareness at the Soap Awards

Summer is nearly here as the sun shines.

The power has been connected so the workmen are nearly finished. The hole’s still have to be filled in but at least the power is stable again.

Ray had to have his eyes tested with the pressure tester. A routine part of every routine eye exam that measures the fluid pressure inside the eye. The test is called tonometry. Increased pressure within the eye can be a sign of glaucoma, a common and potentially very serious eye problem, if it is not detected and treated promptly.

The pressure inside the eye is measured from the outside. The pressure can be measured without anything touching the eye. The patient looks up close at an instrument that blows a small puff of air into the eye and then uses a special kind of sensor (like a tiny radar detector) to detect the amount of indentation that the air puff causes on the surface of the eye. This indentation is normal and only lasts for a fraction of a second but the downside is the drops make your eyes so sensitive to daylight and poor Ray the sun was shining so he came out squinting away until he got his sun glasses on. Still he wont have it again for another year. The Doctor said that it all looked good. Ray has already had laser treatment to put holes in to relieve any pressure so its good that the op has worked.

These picture capture just how Asbestos just wasn’t treated right from the start as a health risk by the men that worked with it. They make me feel physical sick when I look at them.

Miners playing an asbestos shovelling competition in the West Australian town of Wittenham. All of the men in the image but one have since died from exposure to the deadly mineral 

The snapshot was captured in 1962 in Wittenoom, located 1400kms northeast of Perth in Western Australia. The town was the prime source of blue asbestos in Australia before it was shut down due to rapidly escalating health concerns.

Blue asbestos was used on the roads, pavements, and school playgrounds of the small rural town, wher asbestos pits were offered for children

Robert Vojakovic, the president of the Asbestos Disease Society and a finalist for the 2011 Australian of the Year award, told Daily Mail Australia the competition was a coal mining tradition.

‘It’s a tradition from coal mining towns which started in Australia. The men would race each other to see who could fill the 40 gallon drum first.’

Blue asbestos, which is be 100 times more hazardous than white asbestos, was used on the roads, pavements, and school playgrounds of the small rural town before mining stopped.

Other disturbing images show young children playing in pits of the deadly mineral, completely smothered in the blue powder.

Janelle’s family have publish these photos and it really highlights that Mesothelioma can hit any age. It is far from being just an “Old mans Disease” as so often reported.
In ADAO Interveiw Janelle said –How has asbestos changed your life? I was a 31-year-old wife with a 4-year-old son when I was diagnosed with Pleural Mesothelioma. It started with trouble breathing, pain around my left rib and a constant cough. It was a matter of weeks and I went from being healthy to fighting for my life. I was told I would not survive Mesothelioma, that there was no cure. I decided to have an EPP and I was so thankful it was a success! Since surgery, it has been a long road to recovery. I have come a long way, but I know I will never be the same again. I had a hard time getting off the pain medications and I suffered with severe depression. Some days, I could deal with the new me and other days, it was harder. I just try to continue to improve my life every day. In 2011, I was faced with the reality that the cancer had metastasized into my abdominal cavity. I had debulking surgery with HIPEC. The surgery went well. However, I then learned I was dealing with Restricted Lung disease in my only lung. I now use a BiPAP AVAPS to sleep at night. There has been a lot of hard days, but the ones in between are really great!
We lost this brave US Mesothelioma Warrior in June 19, 2013. So sad but the family continue to raise Awareness and funds for research. They are having to learn to live without our sweet Janelle xx
So many Warriors have been lost and we that wre left have to keep fighting and raising Awareness, that is why I was so pleased that in the Soap awards last night Donna received the award for best Goodbye scene.
Emmerdale: Donna's Goodbye
I didnt agree with the way they had to have her fall of a roof when they had been so great in having her die with mesothelioma. It was a waste of a better story line and the sensationalized the death.

Emmerdale fans have been rocked after Donna Windsor revealed she has a terminal illness.

Donna, who is played by Verity Rushworth, revealed she had been diagnosed with mesothelioma, a rare form of cancer.

Her condition was exposed in the episode after she was taken to hospital by her stepfather Bob Hope (Tony Audenshaw), when she admitted she felt woozy after hitting her head.

But left alone with a doctor, she said that there was nothing that the hospital could do for her and discussed her illness.

Donna, who has returned to the village with her daughter April, said: “I know what’s wrong with me and you’re not going to be able to sort it. I did bang my head, but that’s not why I went dizzy. I’ve got mesothelioma.”

After confirming that her medication sometimes affects her balance, she added: “I have regular check-ups back home. They monitor me – there’s nothing they can do, really. It’s terminal.”

Emmerdale bosses said they chose not to release details of Donna’s illness before the episode, as they wanted the storyline to play out on screen.

Oh Boy there was so much wrong with the story line but we were so pleased that Mesothelioma was being discussed so we turned a blind eye to the faults. They had shown once again that it wasnt an “Old Mans disease”


Living With Mesothelioma-My Diary- Hole in the road, Clinical Trials Day, and Asbestos Global Consumption 2013

Another day hope you all have a good one x

Yesterday the sun shone again and I was so happy. The scan results have been so good so I must fill my days with happy thoughts.

I spent most of the day helping in a legal question to help a friend out and we were amazed at how much help we got from nurses, doctors and lawyers.We must never hesitate and should never feel intimidated. If you have a question then ask– everyone wants to help us to understand Mesothelioma and the law.

Sitting on the computer the power of emails and messages is really huge.

DSCF9730 DSCF9731

This is all by our parking space so we have had to move the car to the visitors car park with the motor home.

It has caused a lot of interest, everyone likes looking down a hole don’t they ?

Our power stayed on all day even though the men were still trying to trace the fault.

We were able to get the car out and travel to the park so Louis didn’t have to miss his run of lead. We did have a huge down pour of rain but on the whole it was a nice bright day.

We came back and I worked away at Asbestos and Mesothelioma Awareness and help anyone that contacts me for help. The Mesowarriors are such a great band of people that become firm friends.

Most people want to know how to get onto my drug and I guide them to the University Hospitals where the trials are carried out.

Yesterday was Clinical Trial Day.

Lemonsat a vegetable market i

Lemons and other citrus fruits are crucial in the eradication of scurvy, the first clinical discovery made by James Lind in 1747. Photograph: Divyakant Solanki/EPA

International Clinical Trials Day, is held on 20 May each year to commemorate the day that James Lind began his trials into the causes of scurvy.

Lind’s experiments in 1747 were run under very different conditions to today. He was serving as a surgeon on HMS Salisbury. His trial consisted of just 12 men, grouped into pairs and given a variety of dietary supplements from cider to oranges and lemons.

The trial only lasted six days but, within that time, there was a noticeable improvement in the group eating the fruit, providing Lind with evidence of the link between citrus fruits and scurvy.

Clinical trials have developed a great deal since Lind’s discovery, but today we remember his work and the importance of research in healthcare.

Never sit back and hesitate the trials are a great way to receive treatment use this site and just put in what ever your ailment is and there will be a trial somewhere

RESOURCE: Latest analysis of global asbestos trade data; majority of use taking place in Asian countries!

One in three people living in Europe are potentially exposed to asbestos at work and in the environment, according to a report released by the World Health Organisation (WHO) at the end of April 2015.

Of the one third of 900 million European citizens who are believed to be at risk of regular exposure, nearly 15,000 lives are lost every year to asbestos-related diseases, such as mesothelioma and asbestosis.

Urgent appeal

At a large meeting held by World Health Organisation (WHO) between 28-30 April to evaluate progress on environment and health, an urgent appeal was made to more than 200 delegates in attendance.

The Regional Director for Europe at WHO said, “There is very little time left…” and called upon “… all countries to fulfil their 2010 commitment and develop policies by the end of this year that will eliminate asbestos-related diseases from the face of Europe.” WHO predict that mesothelioma fatality rates worldwide are expected to rise above 10 million within the next two decades.

Plans to eliminate asbestos disease

In March 2010, at the fifth Ministerial Conference on Environment and Health held in Parma, Italy, 53 governments from across the entire European region agreed to commit to reducing the adverse health impact of environmental threats in the next decade.

One of the first goals to be undertaken by the Parma conference attendees was for the development of plans to eliminate asbestos-related diseases by the end of 2015. By this deadline, it was expected that the majority of the members would have put plans in place, and 37 of the countries already implementing relevant policies.

Unable to reduce production

However, the reality is that those nations who continue to manufacture asbestos are unable to reduce production because of their economic dependence on asbestos exports, which also provides key employment to millions of workers. Despite of overwhelming medical evidence, some asbestos producing countries also argue that white ‘chrysotile’ asbestos is ‘low risk’ and does not pose the same danger as other types.

As a result, five years on from the Parma conference, the general view is that while progress has been made it has been “uneven” between “different countries and different issues.”

Two million tonnes exported annually

Positive steps were taken in January 2012 when a resolution was passed by the Public Health Ministry of Thailand, which called for an immediate ban on the use of white asbestos. In the same year, Canada began to stop mining and exporting white asbestos to a number of developing nations, including India and Mexico. In early 2013, it was reported that Pakistan may also be considering a limited ban.

By 2013 global asbestos production had passed 2,019,000 tonnes. Currently, 55 countries around the world have banned the use of asbestos fibres as an insulating material but still two million tonnes of the deadly mineral are mined and exported annually to developing industrial economies.

Biggest asbestos producer

Of the 16 countries who still continue to produce and export asbestos, Russia is now the world’s biggest asbestos producer, with around 1 million tonnes mined in 2012, more than twice the amount produced by the second largest producer, China. Around 90 per cent of asbestos was being imported by Asian countries 2011/13. Other high asbestos importing countries include Thailand, Ukraine and Pakistan who, between them, consume a total of 110,000 tonnes, while around 10 per cent of asbestos goes to just five countries – Ukraine, Belarus, Mexico, Cuba and Colombia.

The complete list of 16 countries that have not yet banned all forms of asbestos are: Albania, Andorra, Armenia, Azerbaijan, Belarus, Bosnia and Herzegovina, Georgia, Kazakhstan, Kyrgyzstan, Monaco, the Republic of Moldova, the Russian Federation, Tajikistan, Turkmenistan, Ukraine and Uzbekistan, according to WHO.

There are many photos of Asbestos abuse like this one from MD @ Fibre Safe Ltd (asbestos specialists)

A worker pours loose fill asbestos ‘zonolite insulating fix’ into a loft void in America. c1940
Scarey I wonder if its still in that house and what did that pour man die of ???

Mavis Nye's photo.

So all we can do is plug away at calling for a total ban and Im making in roads with the help of contacts to call for all homes to have duty of care, where a survey should be carried out to list where Asbestos is in a house to either be removed by experts or made safe. That is the thing we shouldn’t panic as we can ive alongside it if its made safe, but at least you would have the choice. Its the not knowing that is the danger to our health.

Living With Mesothelioma- My Diary- Pembrolizumab has given me MORE shrinkage Thankyou MERCK

Well good morning.

Yesterday was my Drug and scan day so it was up at 4.30 to shower and walk the dog and we set off at 5.50. The traffic was very good and we traveled straight through so we arrived at 7.30 far to early but at least we had a very welcomed cup of coffee to wake up fully.

Carol booked me in when we arrived at the ward and not long after Lorraine came to get me and take my bloods.

She phoned up and got my scan changed from 1.10pm to “come up now” Great thats just what I did. 8.30am and I was in the scanning Dept. This was going to be a good day.

The nurse came out straight away and I had my scan at 9am. She wiched me luck as it seems the whole hospital knows and was waiting for the results.

I went back to my ward and the Doctor called me in. The bloods were done and everything was great except for my creatinine levels which were high again.

The kidneys maintain the blood creatinine in a normal range. Creatinine has been found to be a fairly reliable indicator of kidney function. Elevated creatinine level signifies impaired kidney function or kidney disease.

So I have to make sure I drink more water. I know its mt failing even though Ray keeps me supplied with drinks.

I will try and drink more I promised the Doctor.

Other than that she was pleased to order the drug for me.

We went away and had a coffee and a cake. this is our usual treat at the hospital.

Back in the waiting room again we settled down for a long wait but the doctor called me in as she had the results of my scan.


It can be seen even if they hadn’t measured it yet. Even more has gone back to scarring. This has never been known.

Different Doctors came and were smiling and congratulating me. It just wouldn’t sink in though.

They will do the measurements and in 2 weeks I can get the print off so I will report here as I love reading and sharing the report.

I was able to have my drug and was all finished by 2.30pm So we got off home and had dinner all before 5pm Amazing.

Except when we got home the electricity vans were in the car park and another whole had been dug. We were asked to put our car in the visitors carpark and they bought in a huge generator and parked that in our spot.

Well we didnt have enough power to run a computer last night. I thought it had blown up until Ray reminded me we are on a generator and that will only supply us with the minimum of power. Enough to run a telly and the lights kept going down. No heating –gosh you really miss it when you cant have it.

I was shattered anyway so we went to bed and I must have been asleep before 9pm.

My poor brain is exhausted with all the excitement. I will have been on the drug for a year next month. That year has flown by and Im still here. I would be dead by now but Im not so I will carry-on and report as much as I can about pembrolizumab and what happens to mesothelioma when taking it. I can keep on it the treatment all the time my body copes with it.

Lou in Australia has had good results even after 3 sessions and sh is showing what it does for Malignant peritoneal mesothelioma which type of cancer that occurs in the thin cell walls surrounding the abdominal cavity,

Lou reports — 7.30am back at hospital just saw my oncologist Significant shrinkage of dead mass and big tumour protruding into tummy!! Fantastic news looks like Mavis Nye’s wonder drug Keytruda is slowly working its magic! 3rd dose overnight today in hospital!—————— Great news !!

I hope it continues for her. It isnt on the free list in Australia so she is paying for the treatment. Well Health care is paying for 2 thirds of it.

There are many more that wish to follow her in Australia so they are watching her results. Its not a trial its being used as it is a treatment for melanoma where it has had great success, so as a last result you can go private. I dont know if you can do the same here but it is something worth looking at.

A great report here —–

The next time someone tells you that cancer drug approval is always slow, arduous, and met by huge regulatory snafus, consider this: Merck ’s Keytruda was approved by the U.S. Food and Drug Administration just three-and-a-half years after the first doses of the medicine were given to patients in clinical trials.

The rapid approval, which allowed Keytruda, also known as pembrolizumab, to leapfrog a similar drug from Bristol-Myers Squibb BMY +0.4%, is a triumph for research head Roger Perlmutter, who arrived at Merck 18 months ago and has significantly improved the company’s record of getting drugs through the FDA.

Perlmutter says Keytruda caught his attention instantly. “I’d just never seen anything like it. And fairly quickly I said to people, “You know, any one of you that’s working on a project, if you want to spend a dollar on that project, you’re going to have to explain to me why I shouldn’t be spending it on pembrolizumab. Because to me, that’s the most important thing that we can do and that will have the biggest benefit for patients.”

Instead of advancing the drug to larger studies, Perlmutter expanded the drug’s existing phase I trial , which lacked a control group of patients getting other treatments, to 3,500 patients with a variety of different cancers. The approval was based on 173 patients with advanced melanoma who had been failed by all available treatments. For 41 of them, their tumors shrank, an effect that has lasted anywhere from 1.4 months to 8.5 months. For most of the patients who responded, the tumor shrinkage has persisted.

The approval was also sped, Perlmutter says, by the FDA’s new “breakthrough designation,” which allowed Merck to be in weekly contact with the reviewers who evaluated not only Keytruda’s safety and efficacy but also Merck’s manufacturing processes.

With both Keytruda and another drug, the sleeping pill Belsomra that was approved in August, Perlmutter has been able to get medicines to market faster than analysts on Wall Street expected, smoothing over issues with the FDA and moving quickly. But the question remains of how much revenue these products can actually generate.

For Keytruda, that’s because the drug is only approved for patients with melanoma that has spread who have not been helped by other available medicines. And, thanks to a burst of new drug approvals, there are a lot of them. Five other new melanoma drugs have been approved since the beginning of 2011.

Ten thousand patients in the U.S. develop metastatic melanoma every year. Half of their tumors have a mutation in a gene called BRAF, which means that they are likely to have their tumors shrunk by drugs that target it: Zelboraf, from Roche and Daiichi Sankyo , or a two-drug combination made by GlaxoSmithKline. The other half move on to Yervoy. After the BRAF drugs fail, which they eventually do, they move onto Yervoy, too.

Only after patients have taken Yervoy will they get Keytruda, which works by knocking out a protein called PD-1 cancer cells hijack to hide from the immune system. Even at Merck’s price of $12,500 per patient per month, that is at most a $140 million market opportunity, according to Seamus Fernandez at Leerink.

Bristol-Myers Squibb’s similar drug, Opdivo, is expected to be approved early next year. More importantly, Opdivo could be approved to be used before Yervoy or with Yervoy, meaning it would leapfrog Merck’s entrant.

One big controversy that has surrounded PD-1 blockers is whether some very sick patients should get them before they have been approved. Some patient advocates say that patients should be allowed to try risky but promising medicines because they have little hope. Perlmutter is a defender of the current system.

He says:

There’s no doubt that Keytruda does have adverse events, and serious adverse events, associated with its use. And so, for people who are suffering from a malignant disease, they may say – and some do say – “Hey, look: I’ll take that risk.” But if you don’t actually know what the risk is, it doesn’t seem to me that that’s a fair proposition.

Clearly the most compassionate thing that we can do for a drug like Keytruda is to get it on the market so that a learned intermediary – a prescribing physician, an oncologist – can make the decision about whether or not that drug makes sense in a given patient. And that’s exactly the American system. That’s exactly what’s going to happen.

Screen Shot 2014-09-05 at 9.42.07 AM

Living With Mesothelioma-My Diary- A power cut stops my world, Russia, Kazakhstan, Kyrgyzstan and Zimbawe blocking the adding of chrysotile to a worldwide dangerous substances list, Please send your support to the The Asbestos Victims Charter for Justice

Working away this morning answering emails and messages very happily;y when the power went off.

Oh dear! err how do I make a cup of tea, no kettle as that’s electric. Oh yes a saucepan filled with water and on the gas cures that. Oh no sparker, no matches, yes a electric gas lighter in the draw. One spark and it went dead but at least the gas was alight and the water warming nicely.

Its so quiet, the radio is down in the Motor Home.

Ray walked the dog and asked the Park Manager what had happened but he didnt know so ray came home and phoned the electric company. It was 10am now and the power went off at 8am.

They had only just found out about it and were trying to find out just where the problem was. Ray was asked if he would like text updates. So every now and again through the day (yes the whole day) we knew just what was going on.

We went shopping and walking Louis before 12 as what else could we do. Lucky that I had done the washing early but as it was pouring with rain and I could use the dryer I was stuck with it wet.

At 3pm we at last had power, the lights came on, the front bell rang, the clocks all beeped on and the computers all turned on. The world went made but we were back in the world again.

Tomorrow is my big day- Scan day when I’m either going to shock the world with more shrinkage or disappoint the world with growth.  So much depends on my body and my mesothelioma reaction to the MK3475 Trial and tomorrow is no 25 —I will take what comes and deal with it like I have done for 6 years now.

Last week I spent every effort to back the Rotterdam Convention list, according to groups attending the Geneva meeting that wrapped up Saturday.. It ended up with Russia, Kazakhstan, Kyrgyzstan and Zimbawe blocking the adding of chrysotile to a worldwide dangerous substances list So the death of so many people will be on their hands.

About 125 million people are exposed to asbestos at work, according to the WHO, mainly in mines, factories and on construction sites

The 1998 Rotterdam Convention restricts trade in chemicals by obliging exporters to ensure that destination countries have been fully informed about the risks involved and have given an explicit green light for imports.

Civil society groups and unions calling for chrysotile’s inclusion on the list voiced outrage that the fifth attempt in a decade to do so had been blocked.

“The failure to list chrysotile asbestos means millions of exposed workers will stay ignorant of its deadly dangers,” said Brian Kohler, head of health, security and sustainable development for the IndustriALL Global Union.

“Countries that support the listing must be more aggressive in preventing the Rotterdam Convention from remaining a farce,” he told AFP in an email.

The Rotterdam Convention requires full consensus by all signatory members, meaning a single country can block a bid to list a new substance.

The Geneva meeting did manage to add the insecticide methamidophos to the list, according to conference organisers, but failed to list a range of other chemicals, including the pesticide paraquat, which studies have linked to Parkinson’s disease.

The question of whether or not to list chrysotile asbestos and the other chemicals where consensus was not reached will likely be raised again at the next conference on the Rotterdam Convention in 2017.

Alexandra Caterbow, the co-coordinator of the Rotterdam Convention Alliance organisation, warned the meeting that delaying the listing of chrysotile would have dire consequences.

– ‘Death sentence’ –

“Every year you do not list, thousands and thousands of people will be exposed to this substance, which means their death sentence,” she told the conference.

According to the World Health Organization, at least 107,000 people die each year from asbestos-related cancers and lung diseases such as asbestosis and mesothelioma.

While other types of asbestos have long been acknowledged to be hazardous to health, chrysotile is still widely used, especially as an inexpensive ingredient in building materials used in developing countries.

Around two million tonnes of chrysotile asbestos is produced each year, with the industry and a number of nations that produce or use the substance maintaining it is safe.

But WHO says “cancer risks have been observed in populations exposed to very low levels” of asbestos, including chrysotile.

About 125 million people are exposed to asbestos at work, according to WHO, mainly in mines, factories and on construction sites.

Workers’ families can also be exposed through the dust on clothes, and building materials in homes can continue to be a source of exposure for decades.

Sharad Sawant, a 75-year-old former asbestos worker at a Turner and Newall asbestos factory in Mumbai, came to Geneva to lobby for listing chrysotile, after he and his wife both were diagnosed with asbestosis.

“My children know I’m suffering and that their mother is suffering,” he told reporters through a translator, voicing concern his adult children and even grandchildren may have been exposed.

“This is the fault of the asbestos company,” he said.

India has long vehemently opposed adding chrysotile to the Rotterdam Convention list, but did not in the end join the four countries officially opposing its inclusion.

The number of countries opposing listing chrysotile has been shrinking in recent years.

Past efforts to do so were long stymied by Canada, a major producer, but the government withdrew support for the industry in 2012.

And this year, activists were pleased to see that Brazil, another chrysotile producer, backed listing the substance.


Please send your support to the The Asbestos Victims Charter for Justice

In the UK in 2015 more people will die of asbestos related diseases than will be killed on
the roads. Every year the number of people affected continues to rise.
Asbestos remains the single biggest cause of work related deaths. The people affected are
suffering through no fault of their own and we believe this country owes a debt of justice to
asbestos victims and their families.
That is why we are proud to support the Charter for Justice. We believe these changes will
make a real difference and we hope you can support them too.

The Asbestos Victims
Charter for Justice
We believe in Welfare Justice
 Industrial Injuries Disablement Benefit (IIDB) should be
retained and improved. It should also be disregarded for
the purposes of calculating a person’s entitlement to
means tested benefits such as Pension Credits and Local
Housing Allowance.
 Posthumous payments made under the Pneumoconiosis,
etc. (Workers Compensation) Act 1979 and the 2008
Diffuse Mesothelioma Scheme should be made at the
same rate as in life payments.
 Constant Attendance Allowance should be automatically
awarded at the intermediate rate where IIDB has
been awarded for mesothelioma or lung cancer.
We believe in fair a compensation system
 Payments from the Diffuse Mesothelioma Payment
Scheme should help all asbestos victims. All people who
have had payments should receive 100% of average
awards, all prescribed asbestos related diseases should
be covered by the scheme and the scheme should be put
on a sound financial footing. The levy on the Insurance
Industry should be written into law at a minimum level of
 People who are suffering from lung cancer which has
only developed because of exposure to asbestos should
be treated in the same way as mesothelioma sufferers
when making a civil claim. We believe in amending the
2006 Compensation Act.
 Compensation claims which are settled when the sufferer
is alive should be treated in the same way as those
settled after death. Currently they are treated differently
and this means that sufferers are often forced to choose
between settling for less during their lifetime or dying with
the uncertainty of an outstanding claim.
We believe in the right to decent medical treatment
 It is time to review the 2007 Mesothelioma Framework.
The Framework has led to improvements but access
to the best treatment can still be a post code lottery. That
is why the uptake from a revised framework must be made
 Every area of the UK should have a specialist mesothelioma
nurse to ensure the spread of best practice.
We believe in properly resourced medical research
 The UK is becoming a world leader in medical research
into asbestos related diseases. We believe in ensuring this
continues by putting in place a sustainable, ongoing
source of funding.
 Part of that funding should be provided by the monies
raised by the use of recovery of benefits legislation on
Diffuse Mesothelioma Payment Scheme payments.
We believe in preventing future tragedies
 We need a national public information campaign on
the dangers of asbestos in the workplace, home and
public environments. We need a tough regulatory
framework that ensures people who break the control of
asbestos regulations get prosecuted.
 We need to address the issue of asbestos in schools.
We need a national audit of all schools to identify the
presence and condition of asbestos and a long term policy
to eradicate asbestos from our schools.
I support the Charter for Justice:
Name: ………………………………………………………….. Position (if applicable): …………………………………
Address: ………………………………………………………………………………………………………………………………..
……………………………………………………….. Post Code: ……………………………………………………
Email: ……………………………………………………………………………………………………………………………………
Please return to the Asbestos Victims Support Groups Forum UK, 138 Digbeth, Birmingham, B5 6DR
or email


Rays Blog