Bonnie was diagnosed with malignant peritoneal mesothelioma in 2002 after an excruciating year of testing and examination. Given her training as a middle school librarian, Bonnie immediately put her skills to work researching meso treatment options. In nine years, she has undergone six surgeries, multiple rounds of chemotherapy and radiation. Her activist spirit has served her well as she has worked to raise awareness about mesothelioma, and battle her insurance company to cover her treatments.

At one point, Bonnie, her husband John, and her daughter Darcy mounted a major campaign to get the coverage she needed to participate in a clinical trial. They contacted their senators, congress-people, the governor’s office, and the Department of Banking and Insurance. Bonnie connected with the New Jersey Department of Health and Senior Services who helped her find the resources to make her case. After directing letters, documentation, and phone calls from both her surgeon and her primary physician to the insurance company, Bonnie was able to speak with a director and the appeals board of the insurance company, telling them that without treatment she would die. The appeals board said they would “take her case into consideration,” but it was shockingly denied. Finally, after her surgeon spoke with the state level director of the insurance company, at last the company acquiesced, agreeing to cover treatment partially at first, then completely with just a co-pay. Bonnie’s perseverance and spirit ensured that she could access the care she needed.

Bonnie knows the importance of raising awareness, and uses her voice to educate her community about mesothelioma. She has secured proclamations of Mesothelioma Awareness Day in Union County, NJ and the state of New Jersey; as well as playing a pivotal role in having Mesothelioma Awareness Day recognized by both chambers (House and Senate) of the U.S. Congress. Bonnie gives presentations at local rotary clubs about mesothelioma, her own journey and what is being done to combat the disease. Her work with the New Jersey Work Environment Council includes presentations before the President’s Cancer Council on the Work Environment and circulating petitions to ban asbestos. For her next project, she has agreed to represent Meso patients in the National Health Council’s Patient Story Project, where her story will be included with other examples of people with chronic conditions to be used for advocacy.

Bonnie is a strong voice for meso patients and has accomplished great things. Bonnie says her strength and advocacy would not be possible without the support of her husband John, who she says “has always been the best caregiver and support, along with being an advocate with me.”

On this September 11th, many will mourn, in public or privately, the loss of more than 2,500 lives in New York on 9/11/01. The Mesothelioma Applied Research Foundation acknowledges that few may be aware, however, that those who were lucky enough to survive the events of those day, as well as the first responders and bystanders, could still be in danger. Certainly we have all heard of the incidence of disease—ranging from depression to emphysema to cancer—among those who worked at Ground Zero in the days and months after 9/11. But very little has been written about mesothelioma, an almost-always fatal cancer that is caused by exposure to asbestos.

The World Trade Center officially opened in 1973, but some 400,000 tons of asbestos had already been installed for fireproofing and insulation and were lining the walls of the lower floors of the Twin Towers when the Environmental Protection Agency (EPA) declared it a “hazardous pollutant” in 1971.Virtually all of that asbestos is believed to have been released into the air when the towers collapsed 28 years later, to be inhaled by thousands— fleeing survivors, firefighters and other first responders, as well as by those who watched in horror from the streets below and then escaped the disaster site through the dense clouds of pollutants emanating from Ground Zero, not to mention the uncounted numbers upwind who may have unknowingly breathed asbestos fibers in the hours and days following the Towers’ collapse.

Tiny asbestos fibers, once inhaled, embed themselves in the soft tissue of the lungs. As many as 110,000 individuals are estimated to have suffered exposure to airborne asbestos on 9/11 and over the weeks and months that followed.Among the various serious conditions caused by asbestos inhalation, mesothelioma is the most deadly. Its symptoms (weight loss, persistent cough and respiratory infections, shortness of breath, digestive and bowel problems, pain in the chest and/or abdomen), as tumor mass grows on the lining of the lung, abdomen or heart, and invades vital organs, including the heart, liver, and/or intestines, may not be felt for 20 – 50 years after exposure.

Being a rare and under-reported illness (an estimated 3,500 cases or fewer recorded in the US each year), funding for the search for a cure has been hard to come by. Funding sources have been few, and for the past decade the Mesothelioma Applied Research Foundation has been the only source of peer-reviewed research funding and provider of patient support services.Nonetheless mesothelioma research funding, per death, has been extremely low, and even as recently as 2007, the NCI reported that mesothelioma receives as little as 9 times less funding than other cancers. As a result, only one treatment protocol, the combination of the chemotherapy drugs Pemetrexed and Cisplatin which offers a mean survival rate of approximately one year, is available to patients.

Once again the Meso Foundation is supporting the efforts of volunteers to seek official proclamations of Mesothelioma Awareness Day in their states and hometowns.  Many advocates have been in touch with our office to let us know that they are pursuing proclamations and we can’t wait to hear the results!  Meso Foundation Volunteers began this effort in 2004, and it has been a dynamic force that has made a huge impact in raising awareness about mesothelioma.  In 2010, both chambers of Congress passed resolutions declaring September 26 National Mesothelioma Awareness Day.

We have received our first proclamation from the city of Alexandria in Virginia- the new home of the Meso Foundation headquarters!  The Mayor and City Council of Alexandria were happy to oblige our request, and we were able to pick up the proclamation the very next day at the courthouse just a few blocks down the street.

Click here to learn more about seeking your own request!

Resolution text:

Whereas, mesothelioma is an aggressive, asbestos-related cancer that affects the linings of the lungs, abdomen, heart or testicles;

Whereas, the heavy use of asbestos in manufacturing, industry and construction has been recognized as “the worst occupational health disaster in U.S. history;

Whereas, asbestos was used in the construction of virtually all office buildings, public schools, and homes built before 1975;

Whereas, a high percentage of all mesothelioma victims were exposed to asbestos on naval ships and in shipyards;

Whereas, this is now believed to include many of the firefighters, police officers, and rescue workers from Ground Zero on 9/11/01;

Whereas, exposure to asbestos for as little as one month can result in mesothelioma 30 years later;

Whereas, because of occupational, Navy-service related, household, or even incidental exposures and the very long latency of the disease, tens of millions of Americans are now at risk for developing mesothelioma

Whereas, for decades the need for research to develop effective treatments for mesothelioma was overlooked;

Whereas, the result of this neglect is that treatments available today generally have only limited effect and most patients die within only 12 to 15 months from diagnosis;

Whereas, in 1999, the Mesothelioma Applied Research Foundation was formed to eradicate the life-ending and vicious effects of mesothelioma, and early progress in developing effective treatments for the disease is now being made;

and Whereas, the establishment of Mesothelioma Awareness Day would raise public awareness of the disease and of the need to develop effective treatments for it.

On June 22, 2011,Mary Hesdorffer, MS, APRN, nurse practitioner and medical liaison for the Meso Foundation, testified before the United States Senate Committee on Appropriations- Subcommittee on Defense at their Fiscal Year 2012 Appropriations Outside Witness Testimony Hearing.

Ms. Hesdorffer explained the need for sustained and increased funding for mesothelioma through the Congressionally Directed Medical Research Program, and stressed the strong link between mesothelioma and military service. She asked that a dedicated funding stream of $5 million be appropriated for mesothelioma through the Congressionally Directed Medical Research Programs, because mesothelioma disproportionally affects American servicemen and women and their families.

“Almost 3,000 Americans die each year of mesothelioma, and one study found that one third of patients were exposed on U.S. Navy ships or shipyards. That is 1,000U.S.veterans and shipyard workers per year, lost through service to country, just as if they had been on a battlefield,” said Ms. Hesdorffer.

To view the hearing, please click here.  Mary’s testimony begins at the 77 minute mark.

The following day, June 23, the Meso Foundation in conjunction with Senator Patty Murray’s office sponsored a Capitol Hill briefing for congressional staffers.  The briefing featured a moving recount of his mesothelioma experience by patient and Navy veteran Mike Clements and a presentation byMary Hesdorfferon the disease, treatment options and the need for more comprehensive research funding.

Mesothelioma patient and Navy veteran Mike Clements sharing the story of his battle with mesothelioma at a Capitol Hill briefing. Congressional staffer Shawn Bills and Mary Hesdorffer in the background.

Later that afternoon, advocates were given the opportunity to make individual visits to their Congressional representatives.  More than fifty mesothelioma advocates including patients, physicians, caregivers and family members made visits on Capitol Hill to their members of Congress requesting support for increased funding for mesothelioma research.

Mesothelioma patient Lisa Gonneville with her family and Senator Susan Collins of Maine.

Mesothelioma patient Tim Hermetz with his Congressman, Robert Aderholt of Alabama.

Mary Hesdorffer and meso patient Liz Van Zandt educating a congressional staffer on the tragedy of mesothelioma.

The Defense Subcommittee will be crafting the Defense Appropriations bill for FY 2012 in the next month, hopefully before the August Congressional recess.

To help us on our mission to ban asbestos and ensure federal funding for mesothelioma research we are asking members of the Meso Community to visit our Action Center.

Through theActionCenteryou can contact your Senators and your House Representative to ask for their support in sustaining mesothelioma research funding through the Congressionally Directed Medical Research Program.

Second, we are asking everyone to call their Representative’s district office to schedule an appointment to meet with him or her and share your meso story while they are in their home districts during recess the month of August.  By creating and continuing these connections we can ensure our legislators remember the faces of mesothelioma.

The only way to end this deadly disease is to ensure the necessary funding for a cure is made available.

Thursday, June 23rd 5:45 – 6:45 pm

Hampton Ballroom

“How long will it take for my case to resolve or settle?”

“What are the steps in the process for filing a suit?”

“What is the average settlement award?”

The 2011 International Symposium on Malignant Mesothelioma presents a unique opportunity to meet with some of the top lawyers in the field of mesothelioma litigation in a very special question and answer session, open to all symposium attendees.

The Legal Panel participants will be representatives from firms participating at the Diamond Level in the Legal Partners for a Cure program:

John Bernard – Simmons Law Firm

Bruce C. Hill – Peter Angelos Law Firm

Robert Komitor – Levy Phillips & Konigsberg

The moderated Q&A session will feature both prepared “commonly asked questions,” and questions from the floor. This will cover all aspects of mesothelioma litigation, legal representation, and settlement and trial processes among others. The participating Legal panelists will not be promoting their firms or services but will be on hand in a collaborative environment to provide answers that can help patients and their families navigate through the often complicated process of mesothelioma litigation.

The Legal Partners for a Cure program was started in 2011 to recognize some of the top firms in theUnited Stateswho support the Mesothelioma Applied Research Foundation and its mission to end the suffering of mesothelioma. No referrals are provided to these firms for their support.

Advocating for mesothelioma is easier than you think!  The key is to utilize available resources, be clear in what it is you are seeking, and be polite and persistent in your efforts.  We are very excited that many of you will be making hill visits while you are inWashingtonfor the 2011 International Symposium on Malignant Mesothelioma.  Here are a few do’s and don’t for your visits!

DO’S AND DON’TS FOR LOBBYING YOUR US SENATORS AND REPRESENTATIVES

DO:

• Effective lobbying is all about building a good relationship with your Senators, Representative and their staff.  To build that good relationship, always be as pleasant and professional as possible.  Take the high road in developing your messages and your requests.
• Whether writing, e-mailing, calling or meeting personally with your Senator, Representative or a member of their staff, think through what you want to say so that you are prepared.  Keep your message concise and personal.  The power of your experience and the experiences of your loved ones regarding mesothelioma are immeasurable.
• Conclude your message with a clear, concise request for support of whatever legislation you’re lobbying for.
• Always express appreciation at the end of the message, conversation or meeting.  Even if you’ve not gotten the response you want, a thank you for the time and interest you’ve been given is important.

DON’T:

• Senators and Representatives have very busy schedules – both in DC and back home.  Do not be put off if you are referred to a staff member.  The staff who work for US Senators and Representatives are their eyes and ears and play a significant role in their bosses’ decisions regarding positions on legislation.  Sometimes it’s even better to meet with the staff – they may have more time and more background in this unique and scientific area.
• Threatening and/or arguing will not accomplish our goal of getting support.  Should you start to get messages that aren’t what you were hoping for, regroup and consider other strategies – finding others to join you in your lobbying, considering other messages that might be more compelling, etc.
• Hesitancy to take a position is not uncommon and should not be viewed as a negative.  For those unfamiliar with mesothelioma and the lethal risks of asbestos exposure, this is all new.  Just keep involving others and generating messages of support!
• A “no” may not be final!  With continued communication you may be able to change the mind(s) of those who just don’t get it – yet!  Be pleasantly, patiently persistent!
• Jargon, especially medical jargon, can be very confusing and distracting.  Do what you can to avoid it or to make it understandable.
• Don’t forget to say “thank you!”  You’d be amazed at how rarely thanks are expressed and how grateful and impacted Senators, Representatives and their staff are when they receive a hand-written thank you.

The following is an article about it published by the National Cancer Institute (NCI):

Chemotherapy Affects Brain Structure of Breast Cancer Patients

A new study has provided some of the strongest direct evidence to date that chemotherapy has physical effects on areas of the brain that, when altered, could result in the array of cognitive symptoms that is often called “chemo brain.” The study was published online August 6 in Breast Cancer Research and Treatment.

In a small study of women with breast cancer, researchers from the Indiana University School of Medicine used MRI scans to show that chemotherapy was associated with a decrease in the density of brain gray matter. The affected areas include those involved in memory and in the ability to process information. Although several other studies have shown similar changes in these areas of the brain, this was the first study to follow women prospectively and to compare scans before and after chemotherapy.

“The alterations in gray matter density observed in the [chemotherapy] group are… consistent with the pattern of cognitive complaints and impairment found in neurocognitive studies,” wrote Dr. Andrew J. Saykin and colleagues.

The study included 17 women with breast cancer who underwent chemotherapy after surgery, 12 women with breast cancer who did not receive chemotherapy after surgery, and a control group of 18 healthy women. The initial MRI scans, performed shortly after surgery in the participants with cancer, showed no notable differences in gray matter density among the three groups. One month after completion of chemotherapy, however, MRI scans revealed notable decreases in gray matter density in women with breast cancer, as well as changes in gray matter density in women who received surgery only, although the changes for these women were not as great. No changes were seen in women in the control group. After 1 year, women treated with chemotherapy had recovered gray matter losses in some regions, but other deficits persisted.

Exactly how chemotherapy may be causing these changes is unclear, said study co-author Dr. Brenna McDonald. “However, the finding that the changes appear to resolve naturally to some degree in the first year after chemotherapy is completed is a very positive one,” she wrote in an e-mail message. Because of the limited follow-up in the study, she continued, it’s unclear how much further recovery may occur naturally. A number of studies have shown that such cognitive effects can persist for many years, she added. Additional studies are investigating whether other therapies, such as tamoxifen, may have similar effects on brain structure.

Forty-two disease clusters have been in 13U.S.states, showing incidence of numerous types of cancer, birth defects and other chronic illnesses.  Only one of the 42 clusters – inLibby,Montana- showed a specific source for chemical contamination: asbestos.  Libby was identified as a cluster due to the high occurrence of malignant and respiratory diseases, including mesothelioma.  The study looked at clusters that have occurred since 1976 when Congress passed the Toxic Substance Control Act, which was meant to regulate the use of toxic chemicals in industrial, commercial and consumer products.  The study concluded that the “state-level capacity to address (disease clusters) was inconsistent and disjointed.”

When a community is concerned that they are experiencing an unexpected increase in the incidence of birth defects, cancer or other diseases, people become concerned and want help in getting answers to their questions.  This legislation aims to improve response to suspected disease clusters by:

• Strengthening federal agency coordination and accountability when investigating these potential certain “clusters” of disease;
• Increasing assistance to areas impacted by potential disease clusters; and
• Authorizing federal agencies to form partnerships with states and academic institutions to investigate and help address disease clusters.

This bill will create safer and healthier communities across the nation, by identifying communities at risk and halting emerging disease clusters.

Resources:

Strengthening Protections for Children and Communities From Disease Clusters Act

Click here to view the bill

Adequacy of State Capacity to Address Noncommunicable Disease Clusters in the Era of Environmental Public Health Tracking

Click here to view the journal article

Health Alert: Disease Clusters Spotlight the Need to Protect People from Toxic Chemicals

Click here to read the report

“The first step in our approach is to keep annual domestic spending low by building on the savings that both parties agreed to last week.  That step alone will save us about $750 billion over 12 years.  We will make the tough cuts necessary to achieve these savings, including in programs that I care deeply about, but I will not sacrifice the core investments that we need to grow and create jobs.  We will invest in medical research.”

-President Barack Obama, April 13, 2011

Details on the administration’s deficit reduction framework, as well as a transcript of the president’s address, are available at: http://www.whitehouse.gov/blog/2011/04/13/president-obama-s-framework-4-trillion-deficit-reduction

A fact sheet on the framework is available at: http://www.whitehouse.gov/the-press-office/2011/04/13/fact-sheet-presidents-framework-shared-prosperity-and-shared-fiscal-resp

The Meso Foundation has joined the national coalition of organizations called the Ad-Hoc Group for Medical Research which uses their collective voice to advocate for increased funding for medical research through the NIH.  For Fiscal Year 2012, the Coalition has requested a funding level of $35 billion for the National Institutes of Health.  This funding is essential to find a cure for meso!

For more information on the Medical Research Ad-Hoc Group:

https://www.aamc.org/research/adhocgp/

Thanks very much to the members of the Meso Community for responding to our request to sign the online petition asking Congress not to cut funding for research funded by the NIH. As of April 1, the Ad Hoc Group for Medical Research on-line petition has garnered over 16,000 signatures.

The petition notes the nation’s health and economic vitality have benefited from the longstanding, bipartisan commitment to NIH-supported medical research at more than 3,000 medical schools, teaching hospitals, universities, and other research institutions in every state. If you have not done so already, the Meso Foundation encourages you to sign the petition, as well as continue to share the petition with other organizations and individuals concerned about the future of NIH funding. The NIH is the umbrella agency for the National Cancer Institute, where many of our meso patients are treated and important research is carried out.  The petition will remain open until the FY 2011 spending measures are resolved.

The petition is available at: http://www.ipetitions.com/petition/preservenihfunding/

For more information:

http://www.curemeso.org/site/apps/nlnet/content2.aspx?c=kkLUJ7MPKtH&b=3374433&ct=9284669&notoc=1