Opposing HR 526: The Furthering Asbestos Transparency Act 2015
Washington D.C. – 4 Feb. 2015
On February 4, 2015 House Resolution (H.R.) 526 made it to the floor of the U.S. House of Representatives Judiciary Committee.
H.R. 526, also known as the Furthering Asbestos Transparency Act (trying really hard to not use quotation marks here around transparency*), packs a huge punch to anyone fighting for asbestos related diseases.
It is hotly contested by BOTH parties. Each with its own interests to maintain, certainly. However, I believe one side to be leading the charge against wrong-doing and for the people a little better than the other. Let me tell you why …
Heading in to the House
On a rather warm (for February anyway) a group of people who have, and in rememberance of those 
who died from Mesothelioma, joined together to journey to Capitol Hill in Opposition of the FACT Act: HR 526. Not knowing much about it other than what I had read previously, I left my mind and my ears open.
Together the 20 or so folks who truly have a bone to pick with all of Capitol Hill**, ventured to the House. First we met for a briefing of the day to come, and were able to discuss and ask questions about our hearing.
A quick lunch.
Then on to the room in which the hearing would commence.
Both Republicans and Democrats filtered in and out of the room as their time allowed. If they were up next to speak, then they’d appear only moments before. Most, not all. And not the Chairman from Pennsylvania or the Senior Rep from Georgia.
Click to watch the hearing from 2/4/2015
Boiling all of the comments and discussion and minor quarrels away, this is what I heard: This is a fishing expedition. No one knows if there is a problem. No one knows if ‘officials’ are 
looking in the correct places to find problems. But basically, let’s throw one of them there healthy looking people on the operating table, cut ’em open and see if they gots anything wrong with them.
OH! and if I find something, let’s put it, the patient’s name, address & relevant info on a public website so all of the companies who also thought this was a great idea can find all of their (no longer) private information.
I hardly believe this bill is doing what it was once intended to do. Somewhere, someone probably felt really strongly about protecting someone or some entity. Now it appears to me that while these patients have their “private” information displayed for big business to see, cross examine, and delay or deny coverage for – the same businesses absolutely do NOT want THEIR info available EITHER. And in no way does this so-called FACT Act require them to do anything. (*one of the reasons I want to put Transparency in quotes!)
These beautiful faces say it all
Furthermore the Republican Chairman could have offered 5 minutes to a victim to respond to Representatives questions or to make a simple statement. He could have done the right thing and made it happen. Instead he blamed the Democrats who once held House majority for his reasoning not to DO THE RIGHT THING, despite multiple requests to hear from us.
Not a smiling matter, but with a group like this it’s good to remember the joy in the moment
My final epiphany from the day simply reveals that instead of curbing the overall problem of asbestos and it’s continued use, the Government would rather have these ridiculous hearings. HEY CONGRESS THERE IS AN END IN SIGHT! Just ban this cancer causing crap.**
#BANASBESTOSNOW (ban asbestos NOW)
Another Little Known Cancer Takes The Life of Sports Supercaster
“When you die, that does not mean that you lose to cancer. You beat cancer by how you live, why you live, and the manner in which you live. So live. Live. Fight like hell. And when you get too tired to fight, lay down and rest, and let somebody else fight for you.” ~Stuart Scott as he accepted the Jimmy V at the 2014 ESPY’s
It’s always tough to see a young person die. I thought my dad, at the age of 65, was young … I really think Janelle Bedel was WAY too young in her mid-30’s … and Stuart Scott, after one last holiday with his family, died at 49.
All of these people I mentioned died of a cancer, yet to have a cure.
I’m adding a brief post on Scott b/c he’s from North Carolina and went to UNC. I live in NC and work at the “other school”. He also spent a great deal of time in Connecticut, where my dad and I are from. He was an intern at the news station I watch now and a broadcaster at the station I worked at years ago. That in combination with my father’s love of sports and my feeling he would’ve been moved by the death of Stuart Scott, I wanted to say a few words in regards to awareness.
So in that sentiment I offer a quick story from Time Inc’s Health segment: “He also had a very rare form of cancer that even experts don’t have pinned down. Fewer than 1,000 cases of appendix cancer occur in the United States each year. Cancers of the appendix account for less than 1% of all diagnosed cancers, according to a review published in International Scholarly Research Notices, so choosing the right course of treatment is difficult because doctors simply don’t have a lot of previous experience to draw on.” It’s very similar to Mesothelioma in that regard, and what the victims suffer not having anyone who can really help them, not yet anyway.
SS – your passion, knowledge and groundbreaking ideas will live on.
Asbestos still deadly, still around
David McCumber | December 12, 2014
WASHINGTON — It’s not your typical wedding photo. [Thank you to my husband for taking it]
When Courtney Davis got married last summer, she posed in her gown with a large placard: “Message2Congress: If you had banned asbestos, maybe my dad would have been here to give me away.”
Davis’ father, Larry W. Davis, of Southington, died in July 2012 of mesothelioma, a cancer of the lining of the chest that is 100 percent preventable. That’s because is caused by one thing: exposure to asbestos fibers.
My Dad Died; And I Was Bullied By A Lawyer
Apparently the Florida State Bar has no problem with Lawyers being liars and cheaters – in my opinion. I mean, there are likely a number of good people out there, in fact I’ve met a few that were helpful. But ultimately the message from Florida is that unless I’m willing to go into more than a lifetime (or 2) of debt, I cannot protect anyone else from the problems within the Justice System, or protect anyone from the problems I had with my father’s lawyer. And clearly there’s no one to stand up to the Bullies – even the truth can’t do it.
When it happened, it was no surprise. The dying part I mean. My dad, Larry Davis, out lived most people’s ideas on the life expectancy of a patient with Mesothelioma. It was bad. The 1st year was a mess, then he had years of looking (& mostly feeling) better and one really long, awful year at the end. It started w/ a huge surgery, then a realization he would never eat normally again, then the deterioration. I admit, I did not see the day to day. It must’ve been terrible.
What I did do, despite feeling always unwelcome in the home dad lived in w/ his wife (he’d only been married a few months before his diagnosis), was visit him in Florida. Especially in the last few months, and holidays. Every weekend I went back and forth to Florida from North Carolina. In those last 6 or 8 months he’d asked me to get the papers for our timeshare in Rhode Island. He’d be signing them over to me as it was where we’d vacationed every summer since I was very young. He’d told the resort, his friends, his family, his wife and his attorney.
And then it happened.
I’d gone to Rhode Island for that particular weekend to see my mom, my 91 year old grandmother and my brother. They hadn’t seen me in forever since I’d only been traveling back and forth to Florida. It was my grandmother’s birthday. A woman who’d been there for me as much as my father. But on Monday I left to see dad. Half way there I got a voicemail that my dad was dead. There was nothing I could do and I should go home. I called his wife, Carol, and offered my condolences and, as always, my help, support, presence, whatever I could. I was told not to come. She was finally able to say what I’d always felt in my heart, I was not welcome.
The next few days, weeks and months all blend together from there. I spent hours and hours in the airport unable to go home, though by car it was only 3 hours away. My things were with my family up north, including the car I needed to get me home. I was unwelcome to go to the house my father stayed with his wife and there were no planes to take me back to where I came from.
Eventually I got back to Providence collected my things, but not my thoughts, and my mom made the trip back with me to NC. It took forever. And it was quiet. I couldn’t listen to music or think of anything but my dad. When I got home I called Carol. I got a rude call from one of her daughters and a nice call from the other. I tried to send organized messages, bills and such that I’d been handling for him, cable, emails,whatever. But I never got a response. I called about funeral plans, but saw the announcement online before ever getting the generic, everyone included, mass email about the plans.
I didn’t really have any options, warning or consideration. I wasn’t allowed to do anything, I was barely informed on when to show up. A few days after the funeral, I contacted the person my father had been trying to connect with, the man I thought was his attorney, Patrick J Murphy. He was nice enough. I thought he had my dad’s interests in mind.
A week or so later I got his 1st “statement”:
I knew some of these claims were not true. And he was saying that I was the liar – which I knew not to be true. I also did not understand why he was now representing my dad’s widow. It seemed like a conflict of interest when according to the Florida laws we were equally eligible for his possessions, she as his wife, I as his daughter – not her daughter. I had to find the proof to disprove Murphy’s claims.
Patrick J Murphy, 1st of 272 W Hillsboro Blvd Deerfield now 650 E Hillsboro (I’m not sure, does he keep moving), has an F according to the Better Business Bureau site I just looked at. Wish I’d looked before dad’s death. Actually there are SO MANY THINGS I wish I’d done. Clearly.
Instead on honoring my father’s wishes Carol Leavitt and her attorney Patrick Murphy moved ahead with the lies they concocted. Based on the emails (provided) they both had been aware of my dad’s decision.
Patrick “we never talked about the time shares” Murphy
Carol “And Yet She Continued To Take Even This From Me” Leavitt Davis(?)
Anyway, this Patrick Murphy character, never responded to my own attorney’s inquiries. NEVER RESPONDED. I should not have been surprised because he never responded to the calls my father made to his office either, while my dad sat or laid in front of me dying.
Dad’s sister called Carol wondering why she was keeping the time share from me. We all sat around as dad told everyone the timeshare weeks would stay together and that they would go to me and I would allow for family use, if folks were willing to pay for the week themselves.
There were whispers from other Floridians that there was a new man in Carol’s life shortly after the death of my dad. It reminded me of the man I met in a hospital room, months ago, who appeared at his grave side. Or was it an attorney who had something to lose or to gain by helping? I never looked into it further. Just left it to wonder … and now air out here.
Finally, the following FEBRUARY (dad died in July) while I was accepting an award for him and our work with the Mesothelioma Applied Research Foundation, sitting w/ my boyfriend, my dad’s sister and his brother in-law, I got a response from Carol and her attorney, Patrick J. Murphy:
If by “misinformed” you mean you ‘forgot’ to look through your email:
If by “your dad did not act”, you mean he died, well, I see your point … after a month of leaving messages at your office.
How shocked we all were. Something seemed fishy, right from the start. I’m not a legal mind so I didn’t know what it was. Apparently what I should’ve done was sign it. According to my attorney, if I wasn’t as smart as I was – Patrick Murphy could’ve gotten in to a lot of trouble.
Apparently it’s all about money. For all these people.
Flash 2 years down the road, I have the timeshare that was ‘in dispute’ and a portion of my father’s asbestos settlement. Carol, having changed attorneys, wanted to continue to fight this out even after seeing all the proof that she was not entitled to the timeshare via my father’s wishes, no matter how hard she fought him on that. And not quite the “nothing” Patrick Murphy was suggesting in his documents, bullying me to sign his paperwork and go away, just like Carol had told me to do. All this while trying to come to terms with my father’s death and his secrets, as I was forced to learn of them, trying to protect myself from a system that doesn’t seem fair or just.
Hundreds of thousands of dollars spent to simply protect myself from all the lies. That’s what this country’s judicial system is about.
In fact, I was warned that if I made a complaint to the Bar about Patrick Murphy, the Bar would look out for their own. In my opinion, that seems exactly right. I got this note, from Bar Counsel person Theodore P. Littlewood Jr., a little more than a week later:
What “careful consideration” means against another attorney from the Florida State Bar, I guess I will never understand. I’m certainly disappointment in Teddy’s statements and personally feel like Patrick Murphy should have some sort of punishment for lying (and bullying), I have come to the conclusion it’s every woman for herself. Damn morals, ethics and proof. If you have money to pay the lawyers, judges, & the system, you are fine. If not, too bad. You have to be willing to lose your life’s savings in court (or heck, in my case, before court) and compromise yourself (only if your moral and ethics are strong as I believe mine are) and then, maybe someone will prove wrong-doing. Got it Theodore Littlewood Jr. I hear you loud and clear. You are not required to think about ethics unless I pay your salary? I’ll let everyone here decide for themselves.
National Mesothelioma Awareness Day
Early in September I offered to donate to something in regards to Meso Research if anyone wanted to join my husband and I and our dog on a run through our neighborhood. I only got 1 taker and his doggie, and I’m going to donate an additional $10 ($5 per) to the sum already used to join the Alton IL race.
Anyway, I put together this little video in honor of our run, the men & women affected by this terrible disease and offer a little humor to go w/ a deadly subject:
Durham, NC 2014 Miles for Meso
Davis Duo
Durham, NC – A couple of weeks ago I agreed (wholeheartedly) to help captain a virtual team for this year’s Miles 4 Meso race in Alton, IL.
TODAY I REGISTERED!! And I hope you will too.
To make it easier – and possibly more fun, especially for my local peeps – I’m offering to donate another $5 for anyone joining me Saturday September 27th at 8:30 am at Durham’s Northgate Park! For each person who makes the commitment to come out and run or walk with me in honor of Mesothelioma Awareness Day & the 6th Annual running of the Alton, IL Miles 4 Meso event, I’ll donate to the cause in your honor. *If you bring your dog, I’ll donate another $5!
Meso Awareness Day is actually September 26th. The day will most certainly be marked by Mesothelioma Awareness Research Foundation Warriors in Times Square, as my father joined in while he was alive. The weekend of MAD he would also try to run the Simmons Hanly Conroy race.
courtesy CureMeso.org
So in his honor I will try to run, or at least walk, a planned course in the Northgate neighborhood (300 West Club Blvd).
YOU can register for the ADAO Mesothelioma Warrior Virtual Team.
I signed up and created the group Durham Davis’s and added I was running in honor of Larry Davis!
** Also, if you join me, in addition to donating $5 to ADAO for you, I’ll provide Saturday morning snacks at my place!
Me & Mary from MARF in 2012
Miles4Meso 2014 & ADAO
6 years ago the Simmons Law Firm in Alton, IL began a race called Miles 4 Meso. Since then numerous groups, companies and individuals have started their own M4M races or rides all across the country. My father organized his 1st the following year, in 2010. The proceeds all going to advancing the little knowledge the world has in regards to the devastating cancer, Mesothelioma, and trying to find a cure.
This year the original race, held the weekend of National Mesothelioma Awareness Day, has pledged their support to the Asbestos Disease Awareness Organization and President, Linda Reinstein.
I personally don’t think I have run a race since the M4M event a few months following my father’s death in 2012. It certainly brings up a number of feelings, many that are not worth mentioning here, but at least one of anger that the US has not yet banned the use of asbestos in many household and automotive products – or that they didn’t when politicians learned asbestos was killing people.
Reinstein recently held a campaign to bring more awareness to Congress #message2congress about the dangers of asbestos. That, in addition to traveling the world for asbestos related hearings and visiting the many victims and families of this horrible killer.
I look forward to helping her bring visibility to this year’s Miles 4 Meso, ADAO and the dangers of asbestos exposure.
Please join us! Either in person or as part of the ADAO Mesothelioma Warriors Virtual Team . XO~Courtney
10th Annual ADAO Conference
April 4 – 6 2014 near Washington D.C.
The place, the Crystal Gateway Marriott: 1700 Jefferson Davis Highway, Arlington, VA 703-920-3230
This year friends of my father will be honored. A young woman, Janelle Bedel, who he greatly admired and who lost her battle with Mesothelioma in 2013, will be recognized as this year’s Alan Reinstein Award recipient as will Lou Williams and Heath Von St. James.
For more info on how you can get involved go to the ADAO website.
Additionally Global Asbestos Awareness week begins April 1 and runs through Monday the 7th.
Need Your Support
Seriously this is SO easy. They’ve done all the work.
Simply click the image, it redirects you, click the Action Center, fill in your name, submit and DONE!!
Changes to the Meso Foundation Symposium
I’m well behind the updates to this year’s Meso Foundation Symposium. I ran into a huge road block in my personal life trying to make sense of a Meso related death and all that has happened since and I have clearly not been strong enough to keep up like I did when I was up keeping this site for my father.
A lot has changed, even in the last year, and things are changing within the Foundation and with the Symposium. But rest assured the most important things will absolutely be the same.
There will be an incredible outpouring of support and caring. People like Mary Hesdorffer will be there with amazing insight and availability (don’t get me wrong, she’ll be super busy, but somehow she defies the space-time continuum with personal conversations and help). The Meso Foundation team will put on another outstanding conference and the attendees will all have experiences to share. If you haven’t made plans and can, definitely go. You will find a support group who will help you every step of the way. And as I read earlier, ‘give yourself permission’ to miss something or cry or express yourself. I didn’t and it only hurts me now.
A few things to note this year … there are 2 events happening. 1st the International Symposium on Malignant Mesothelioma and 2nd the Mesothelioma Scientific Seminar. You will be able to see much of the event via their LIVE STREAM . It has moved from Vegas last year back to the DC area. The host hotel is the Hilton Alexandria Mark Center. Also as you may have seen it is much earlier in the year from the 2012 Symposium.
For more info check out the Meso Foundation website http://www.curemeso.org and Like their Facebook page & find communities.
Action Against Asbestos 