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Asking for support of mesothelioma funding, asbestos ban

Today was busy with meetings at Capitol Hill, asking legislators to support a total ban of asbestos in the United States, funding for mesothelioma research, and that they designate September 26 as Mesothelioma Awareness Day.


The day began with a briefing from Chris Hahn, the executive director of the Mesothelioma Applied Research Foundation (MARF), with latest numbers about federal funding for meso research (WAY below every other cancer) and information about goals for new legislation. A bill to ban asbestos and fund meso research has been before the Senate for the past SEVEN YEARS. In 2008, S774, more commonly known as the Bruce Vento Ban Asbestos and Prevent Mesothelioma Act, passed the Senate, and in 2008 its companion, HR3339/6903, made it to committee in the House of Representatives, but never made it to the floor. It died in committee when the session ended and we now have to start all over.


Beginning at 11 a.m., I met with aides from Congressman Bobby Bright‘s office, as well as the offices of Senators Richard Shelby and Jeff Sessions. I was disappointed that I was unable to meet with any of the legislators personally, but two of the aides were particularly enthusiastic about our efforts, and the third was amenable, so I have high hopes. Now I will simply begin to pester people until we finally see some legislation! I left copies of our petition in support of these efforts with each of the Congressional offices, so I hope they will listen to our voices!


Tomorrow the sixth annual International Symposium on Malignant Mesothelioma will address the latest topics in mesothelioma research and treatment. 170 people attended the Advocacy Day today, and 230 people will attend the conference tomorrow and Saturday, the largest number yet.


Chris Hahn told us, “The way that we’re going to cure this disease is through community. On Advocacy Day, each person’s voice makes a real difference, and each of you speak for hundreds who could not be here.”


I hope our legislature is listening.

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Worrisome news for Debbie in UK; please send her your support

Our good friend Debbie Brewer, in the UK, (pictured with sons Rich and Kieran) who has been in remission from her mesothelioma since December 2008, had a worrying report from her latest medical checkup. She visited her oncologist in the UK on Sept. 16, and they have detected some increase in size in her lymph node as the result of a CT scan of her chest, abdomen and pelvis.

“My oncologist is putting me in the Meso box again, and I am not going there,” she told me in an email this morning.

She’s posted the medical records on her blog, Mesothelioma & Me, so please visit her site to check out the full report. According to the findings section, the scan detected “a new 5mm nodule and several smaller new nodules withing the lower left lobe.” However, the scan does not show any growth or changes in the existing areas where they knew there was tumor previously.

It’s been a rough several weeks for Debbie, as she only recently was released from the hospital after suffering a bad case of swine flu and pneumonia! In her blog, she says she is hopeful the increased lymph node could be related to the infection and pneumonia from her illness rather than cancer cells.

Debbie experienced wonderful success in the treatment of her mesothelioma under the care of Dr. Thomas J. Vogl, who she began seeing in May 2008 for an experimental new treatment, chemoembolization. Under his care, her tumor (which she calls Theo) shrunk an amazing 83 percent. Debbie must travel to Germany to participate in the clinical trial at J.W. Goethe University Hospital at Frankfurt University.

Debbie said she has contacted Dr. Vogl about her latest test results, and will consult with him about treatment following a P.E.T. scan.

We know that Debbie is an ultimate fighter and wonderful advocate for mesothelioma awareness and for justice for victims of asbestos disease. Please send her some well wishes! You can contact her through her blog or email her at phu_phita@hotmail.com. I know she’d love to hear from you!

I will keep you posted!
Tags: asbestos, chemoembolization, Debbie Brewer, Dr. Thomas J. Vogl, mesothelioma
This entry was posted on Thursday, September 17th, 2009 at 10:17 am and is filed under News, People. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.

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