In the Shadow of Advocacy: A Meso Morning on Capitol Hill

Wednesday July 11, was Advocacy Day for us here at the Meso Foundation. In a later blogpost, you’ll hear me refer to this Wednesday before our 2012 Symposium as Virtual Advocacy Day but for those of us meeting (some of us, for the first time) on the Hill, it was Advocacy Day. Period. While we put out the call to tweet and post on Facebook awareness on mesothelioma research, I was joining Meso Community member Robena Reid on a visit to Capitol Hill. Our appointment was with Senator Jim Webb of Virginia’s office. I had been asked by the Foundation to shadow her for the morning, write up a report for our blog, and take photographs.

Now here is the true confession: I have never advocated anything before in person. I have emailed my representatives, both on the State and Federal level, but never have I gone to the Hill to speak on the issues. Any issues. This morning I was far out of my comfort zone really not sure what to expect.

The good news is I had Robena Reed to follow. Robena is part of the Department of Transportation; but regarding mesothelioma, Robena lost her mother to the disease. She has now taken it upon herself to prepare for visits with her representatives and bring to their attention the facts and truths of this horrible disease.

We met with a representative of Senator Webb’s, not the senator himself; but Legislative Correspondent McKenzie Bennett (pictured with Robena here) was focused, attentive, and approachable. She asked questions, sincere and thought-provoking questions. This kept us both on our toes, and soon I found myself stepping into the conversation between Robena and McKenzie.  Having your talking points printed from the curemeso.org website prior to your meeting will ensure you have the facts that you need.  Should your staffer have questions, take advantage of this opportunity to follow up with them after the meeting.  Together, we spoke for the community, providing statistics not only specific to Virginia but specific to mesothelioma and meso patients from coast-to-coast. When McKenzie concluded our visit, I admit to feeling elated with the morning meeting. Robena and I had just concluded an audience with Senator Jim Webb, bringing mesothelioma, its community, and its interests before our representative.

Then it dawned on me that we had a group of fifty in total, all of us speaking on your behalf.

The morning on Capitol Hill was a real education, and the last place I ever planned to find myself. I found a new appreciation for being able to make a difference. It is quite humbling and, yes, inspiring that we have the ability and the means to make a difference like this. I left Capitol Hill at the end of the day a little wiser on the process in which laws are made and the government serves its people, and understanding what happens when voters talk to their representatives. It was also inspiring to watch Robena take action, to hear her speak for the meso community. I’m already thinking of next year and what I can do differently.

I also hope, next year, I am asked once again to shadow Robena. After working with her on the Hill, I know I still have more to learn.

FROM THE FOUNDATION: Your Questions (and the Doctors’ Answers) from the 2012 Symposium

Currently happening at the Omni Shoreham Hotel in Washington, DC and hosted by the Mesothelioma Applied Research Foundation, the 2012 Symposium has brought together mesothelioma scientists, doctors, medical professionals, mesothelioma patients and their families, and other advocates together in order to showcase research, discuss options, and raise awareness in finding a cure for mesothelioma. While many are in attendance, there are some that for a variety of reasons cannot attend. This is one reason why we at the Meso Foundation have enabled a Live Stream that brings the Symposium to you.

The Meso Foundation has assembled an exceptional agenda featuring presenters such as Raja Flores, MD, Giovanni Gaudino, PhD,  Steven Hahn, MD,  Harvey Pass, MD, Daniel Sterman, MD, David Sugarbaker, MD, Raffit Hassan, MD,  Robert Kratzke, MD, Lee Krug, MD, and many others. The theme of the Symposium is “What’s Your Question?” and attendees have taken this to heart. Here are some of the questions our special guest physicians have addressed during our first Symposium Live Stream.

Q: How did the phase I clinical trial with the WT1 peptide vaccine go?

A: Stay tuned! I will be discussing the results in detail in the afternoon session.

Q: What is the role of photo-dynamic therapy following thoracic surgery for mesothelioma?

A: Photodynamic therapy involves the delivery of a drug that sensitizes a patient’s tissues to light, and then light is shined directed on the tumor tissue. This has been a strong area of research interest from Dr. Friedberg at the Univ. of Pennsylvania who uses it to treat the surface of the chest wall after surgery for mesothelioma. The effectiveness of this technique remains unclear, and he is the only one pursuing this approach at the current time. This has been studied previously by Dr. Pass who did not find it effective, though Dr. Friedberg may have more promising results. Photodynamic therapy may increase the risk of surgical complications, and should only be done in the setting of a clinical trial.

Q: I have blood in my urine. Can meso reach the kidneys?

A: There are many causes for blood in the urine (hematuria), the most common being a urinary tract infection. Others include bleeding issues (for example, for patients on blood thinners such as Coumadin), other drug toxicities, or tumors that start in the kidney or bladder. Hematuria caused by tumor metastases is much less likely. It would be quite rare for pleural mesothelioma to spread to the kidneys. Peritoneal mesothelioma could potentially cause it by invading into a part of the urinary tract. The work up would include a urine test for infection, imaging such as ultrasound or CT scan, and possible a cystoscopy (scope procedure to look in the bladder).

Q: Is there any relationship between having an EPP and being one of the fewer than 10% of patients who develop bone cancer?

A: I presume by “bone cancer,” you mean a metastasis (spread) of mesothelioma to the bone. This can unfortunately occur to some patients with advanced mesothelioma, regardless of whether or not they had surgery.

Q: Since my husband had meso, should my daughter be tested for the BAP1 mutation – or is it even available?

A: Although BAP1 mutations occur in about 20% of mesothelioma tumors, they are usually “spontaneous” mutations, and we think familial BAP1 mutations are the cause of mesothelioma for a relatively small percentage of patients. However, if there is a history of mesothelioma in other family members, or of melanoma, particularly ocular melanoma, then it would be reasonable to discuss the pros and cons of BAP1 genetic testing with a genetics counselor. Information on this gene is just now emerging, so we don’t yet know what to do with the results.

Q: Should patients have CT, PET/CT, or MRI for surveillance scans?

A: Radiology imaging for mesothelioma is notoriously challenging, and all of our current techniques have limitations. For patients with pleural mesothelioma, I generally follow them with simple CT scans. I find PET/CT most useful at diagnosis to determine the degree of tumor spread (stage of disease), though I think it can be difficult to interpret the significance of minor changes on the PET scan when used for follow up. MRI of the chest is less optimal due to respiratory motion that occurs during the longer time necessary to acquire the images. Newer imaging techniques are needed, and are being explored such as measuring tumor volume.

Q: Is there a consensus on how often a patient should be tested for recurrence?

A: No formal consensus, but the practice is to follow by physical examination CAT scan approximately every three months during the first year, then every six months for another 18 months, then yearly until five years. There is no consensus after five years but it is unlikely that continued surveillance will be of benefit.

Q: Where would you recommend someone to be tested for possible 

A: even in individuals heavily exposed to asbestos, the risk of mesothelioma is less than 1%, so that screening of asymptomatic individuals isn’t very helpful. Also,the interval between Asbestos exposure and the development mesothelioma is estimated to be greater than 15 years again making yearly surveillance not very helpful. Those who do have clear evidence of asbestos exposure such as pleural plaques, should be looked at at least once every two years by chest x-ray or CAT scan.

FROM THE HEADLINES: International Team from the University of Hawai’i Identifies Protein Critical in Development of Mesothelioma

Former Mesothelioma Applied Research Foundation’s grant recipient, Dr. Haining Yang  (University of Hawai’i), is once again making news with the recent discovery of a protein that is activated following exposure to asbestos leading to the development of malignant mesothelioma.  As reported by MedicalXpress.com, Dr. Haining Yang, PhD, and an international team of researchers have identified HMGB1 as a critical protein in the development of malignant mesothelioma. Dr. Yang’s findings are the cover story of the July 1’s Cancer Research, one of the nation’s leading cancer research publications.

“We are very excited about this discovery and are extremely pleased that it was also chosen to be the featured cover story,” said Yang. “The next step is to translate this discovery into actual treatments for mesothelioma patients.”

This discovery into the growth of mesothelioma offers scientists an opportunity to develop specific therapies for mesothelioma patients. Mesothelioma, a malignant tumor of the lining of the lung, abdomen, or heart known to be caused by exposure to asbestos is considered one of the most aggressive of all cancers. Approximately 3,000 Americans are diagnosed with mesothelioma every year, yet available treatments have limited effectiveness. Identifying this biomarker for early detection will help shed light on developing new treatments for mesothelioma prevention and therapy.

Earlier this year this same lab worked collaboratively with others to announce the first gene associated with malignant mesothelioma BAP1. Dr. Giovanni Gaudino from the University of Hawai’i will be discussing BAP1 and its possible utility as a target for therapy and identifying those at high risk to develop mesothelioma at the Meso Foundation’s 2012 Symposium during the “Demystifying Scientific Breakthroughs” panel. It is a very exciting time for mesothelioma research and the promise for further scientific breakthroughs will be the focus of discussion at the Symposium.

The current study was an international effort and included investigators from the University of Hawai‘i Cancer Center, the John A Burns School of Medicine in Honolulu, the San Raffaele University and Research Institute in Milan, Italy, the National Institutes of Health in Bethesda, Md., and the New York University School of Medicine.

FROM THE HEADLINES: 2012 Symposium Speaker Dr. Raja Flores on the Lasting Toll of 9-11

Dr. Raja Flores, chief of thoracic surgery at Mount Sinai School of Medicine and a featured speaker at our 2012 Symposium in Washington D.C., spoke to FoxNews.com about the adverse health effects some of those first responders have faced. The article reports that Mount Sinai researchers have been following approximately 30,000 first responders, many of whom were breathing in dust containing 2,000 tons of asbestos on a daily basis as they cleaned up the site. The researchers found 30 percent had problems with asthma, 40 percent had sinus problems, and another 40 percent had gastro-esophageal reflux, which is a precursor to esophageal cancer.

You can also watch the accompanying video here.

If you want to hear more from Dr. Flores, make plans to join us at the 2012 Symposium on Thursday, July 12, (9:45 a.m. – 12:00 Noon) to participate in the panel “Demystifying Scientific Breakthroughs” panel. Along with Dr. Flores,  the latest in mesothelioma research will be presented by Stephen Hahn, MD, Raffit Hassan, MD, Robert Kratzke, MD, Harvey Pass, MD, Daniel Sterman, MD, David Sugarbaker, MD.

Click here to preview the 2012 Symposium agenda.