Japan’s Asbestos Disaster

LKAby Laurie Kazan-Allen

Despite the knowledge that asbestos caused disabling and deadly diseases, the Japanese Government continued to allow the use of asbestos into the 21st century. The protracted process of banning asbestos in Japan was only brought to a successful conclusion on March 1, 2012 when the final exemption allowing asbestos use was terminated. Prior to this, it has been estimated that almost 10 million tonnes of asbestos were used nationwide for a wide range of purposes including construction, industrial processing, transport and consumer products.

The devastating aftermath of Japan’s asbestos legacy is visible in doctors’ waiting rooms, hospital wards, the offices of asbestos victim support groups and government epidemiological data. From 1995 to 2011, nearly 15,000 people died from mesothelioma and asbestosis with the number of annual fatalities more than doubling from 500 (1995) to 1,258 (2011). As in other countries, the asbestos epidemic has claimed the lives not only of people who worked with asbestos but also people exposed to asbestos-contaminated work clothes brought into homes; exposures to asbestos waste and asbestos products contained within the country’s infrastructure have also proved fatal as have exposures which occurred as a result of natural disasters such as the 1995 Great Hanshin Earthquake. A year before the asbestos pollution created by Hurricane Sandy endangered U.S. citizens, hazardous levels of asbestos were recorded in the wake of the Great East Japan Earthquake.

It is encouraging that the future use of asbestos has been comprehensively prohibited in Japan; the same cannot be said for the United States where no ban asbestos legislation exists. Even though American asbestos consumption is low, there can be no excuse for the use of a carcinogenic substance. Maybe 2013 will be the year that political leaders in Washington take action. Isn’t it about time they did?

About Laurie Kazan-Allen

Ms. Laurie Kazan-Allen has been researching, writing and campaigning on asbestos issues for more than twenty years. The British Asbestos Newsletter, the quarterly publication she founded in 1990, is widely regarded as one of the most authoritative contemporary sources of information by the UK community of asbestos activists. In collaboration with international colleagues, in 1999 she established The International Ban Asbestos Secretariat (IBAS). As the IBAS Coordinator she has organized and/or participated in asbestos events on six continents, amongst the most recent of which was an asbestos hearing at the European Parliament.

As an adviser to the UK All Party Parliamentary Asbestos Sub-Group, Ms. Kazan-Allen helps organize the annual Parliamentary asbestos seminar. Kazan-Allen has written prolifically about asbestos issues in 85+ issues of the British Asbestos Newsletter and in IBAS publications such as Eternit and the Great Asbestos Trial, Report on the Asian Asbestos Conference 2009, India’s Asbestos Time Bomb and Killing the Future – Asbestos Use in Asia. These and other texts can be accessed on the websites: www.britishasbestosnewsletter.org and www.ibasecretariat.org

Notes from Mary Hesdorffer, Executive Director of the Mesothelioma Applied Research Foundation

mary1The past four months have rapidly flown by and I had hoped to correspond with you more often and in greater detail since assuming my new role. I am enjoying this position and I must confess it has its challenges, but each day, with the assistance of the Foundation’s talented staff, we make progress and work toward fulfilling our mission. Our mission statement is posted online and was crafted with the input of board and staff. We feel that we have clearly stated the objectives of the organization and are anxious to hear what your thoughts about the direction of the Foundation. I have scheduled a town hall meeting for next week as I have not had an opportunity to thank many of our supporters and to hear their viewpoints on the mission of the Foundation and how it is meeting their current needs.

Right now my focus is on the peer-reviewed grants program. I meet with the Board of Directors (BOD) on Thursday night for a decision on the number of grants to fund. As you may recall, the Foundation administers a robust peer-reviewed research grants program which is one of the major focuses of our Scientific Advisory Board (SAB). Please view the bios of this talented group of scientists who review the grants in great detail in a process based upon the system used by our National Institute of Health. Why such a laborious process? Simple – without a strong scientific review, and oversight following funding, your research dollars would have little value. We ensure that each dollar donated to our research program is treated with respect and good faith that it will be used as intended, with oversight and transparency. The SAB recommends the grants that are worthy of funding and the BOD has the fiscal responsibility to allocate budgeted funds for this purpose. I want to personally thank Dr. Lee Krug, Chair of our SAB for leading the process and keeping us informed of progress of the grant review. His strong leadership and scientific knowledge guided this rigorous process.

It is with great excitement that I await Thursday’s meeting and we will share this news with the community quickly and with great enthusiasm.

WHAT: Town hall meeting (conducted via conference call)
WHEN: 8:00 p.m. EST Wed. Jan. 23rd
WHO: Everyone is invited
WHY: To discuss Foundation updates and its programs and to allow for question/answer with executive director
WHERE/HOW: Conference call in number: (605) 475-4000
Participant Access Code: 216145

What To Expect from our Symposium on Malignant Mesothelioma

LivestreamBannerWebsiteEach year the Meso Foundation holds an international Symposium to bring together all those affected by mesothelioma. Researchers leave their labs and travel a great distance to share with the attendees their work, as well as try to gain insight into what the diagnosis of mesothelioma means to those whose lives have been impacted. This is a very important part of our Symposia, as the fostering of these important relationships energizes the researcher and also is empowering to those who are tasked with fighting this deadly disease. We have been told by some of our researchers that interacting with mesothelioma families has impacted them significantly and they go back to their labs taking the suffering and the needs of the community with them. This has translated into some lasting bonds and a reunion of sorts takes place at the upcoming Symposia.

In this age of information overload, you are bombarded with so many emails about “breaking news about the cure for cancer”; “new drug promises a lasting remission in patients with rare cancers,” etc. Well, this is the opportunity to get beyond the hype and meet those in the trenches who can help you to understand the complexities of the disease in a straight forward manner, minus the hype meant to draw you to a particular website, group etc. This is the real deal and only the Meso Foundation can provide this service for you. We believe that a well-informed patient makes better decisions.

And for our donors – even if you don’t currently have a loved one fighting this disease – the Symposium is your opportunity to meet our funded researchers and ask them about their research and how your research dollars have had a positive impact.

Setting Goals in the New Year..It’s Never Too Late

New-Year_blogAs the start of the new year progresses, we reach that time when we start working on goals that we outlined for the year, and many of us realize that we may already not be meeting a goal. If that’s your story, here are a couple of things to keep in mind when dealing with New Years’ resolutions and goal-setting, in general.

The first thing that you need to remind yourself is that it is OK to to not reach your goal on the first try (or even later tries). Life is all about getting up and starting again.  Setting New Years’ resolutions or goals should never be something that hangs over your head.  They should be something that motivates and encourages your life. Create a vision of what you want to achieve in the future and then set up ways to make that happen. Below are a few tips that could help you in this process.

1.)    Specify Your Goal. People who are successful in changing an unwanted habit are able to say exactly what it is they will do. People who are vague about their goal have less chance for success. Be as specific as possible. The more you understand your goal and how to achieve it the more you will want to achieve it.  For example, I want to read more.  To help me achieve this, I can specify the time that I want/plan to read and exactly what I want to read. I can make a list of books I have wanted to read. This will help motivate me as I will know what titles I get to look forward to.  If you are a caregiver, perhaps your goal is setting aside 30 minutes per day for an activity that you find relaxing. If you are a patient, you may want to begin a list of what you have to be grateful for and set aside time each day to read your list and share with those that you love. If you have lost someone to meso, perhaps you can reach out to someone who is wearing your old “shoes” and offer them advice or support.

2.)    Start Small. If the goal is too large, vague or overwhelming you will not know how to begin. Start with something small that you know you can accomplish, and once you do, the satisfaction will propel you forward.

3.)    Plan for Relapse. We can start a goal with the best of intention but it is always easy to lapse or backslide. Plan for this. Don’t berate yourself for slipping up. Start again and remember to always reward your successes.

Spirituality and Mesothelioma

By Mary Hesdorffer, Nurse Practitioner
Executive Director, Mesothelioma Applied Research Foundation

social_media_sphereAs you may have noticed, we recently added two groups, one group to focus on spiritual distress led by Rabbi Barbara Zacky, and a Christian prayer group led by Rev. Eric.

Why would an organization like the Meso Foundation want to add these two groups? It’s simple, really. Having dedicated my nursing career to caring for patients and family members affected by mesothelioma I became aware of this need within the community. Some have lost faith in the journey and had a desire to explore what spirituality means to them now, in their current situation and feel that perhaps the possibility exists of recapturing some of what had been lost during their personal experience with mesothelioma. Finding peace and hope and engaging in the act of living are so important, yet they are heavily impacted when mesothelioma enters into the realm.

Rabbi Barbara is working closely with Roberta Friedman, a pleural mesothelioma patient who has always impressed me with her awareness of the need to center oneself, find a quiet space and enjoy the moment. You will hear more from Roberta on the upcoming calls and I am sure you will find her engaging and bright. She will encourage you to explore new ways of thinking about and enjoying life. I enjoy my chats with Roberta and always come away with a fresh perspective and a connection with self and the universe.

Rev. Eric, himself a mesothelioma patient, knows first-hand the impact of this diagnosis on the patient, family member and those in our “inner circle”. Rev. Eric has graciously offered his services as a minister to minister to our mesothelioma community. He is available both on the Christian prayer group call and to offer his ministry to all faiths who need counsel and support. He has been of tremendous help to many touched by this disease.

Ginger Horton is a strong young woman who also carries the diagnosis of peritoneal mesothelioma.  She is a woman of deep faith and is a strong advocate for prayer. Rev. Eric and Ginger make a mighty team and feel drawn to the Foundation and the ministry of healing through prayer.

Part of the Meso Foundation’s mission statement is to end the suffering. I truly believe that these two support groups help us to fulfill our mission and I hope that we will continue to explore ways to bring comfort to this community. You do not need to be a zealot to engage in prayer, or to have a religious denomination defined to explore spirituality/ and or spiritual distress. These are options along with our support groups and online services to complement your everyday life, strengthen you during treatment, and comfort you during loss. We remain committed to funding research through our peer-reviewed research grants program, guiding you in the treatment decision making process and bringing together the mesothelioma community, including the scientists and clinicians, to advance the science and find a cure for this disease.