Mesothelioma Help Cancer News
Paddling the Hudson River to Raise Awareness and Funds for Mesothelioma
Attorney Joseph W. Belluck of the New York law firm of Belluck & Fox, and his son, William, took to the Hudson River and kayaked in the Kayaking4Meso event, held September 12 in Stillwater, NY. The event, in its fifth year, is held to raise awareness, and funds, in the fight against mesothelioma, an aggressive cancer caused by asbestos exposure. Belluck & Fox, LLP has sponsored the event, planned in conjunction with National Mesothelioma Awareness Day held Sept. 26, every year.
“Belluck & Fox, LLP has been a sponsor of the event since its inception and we are proud to be able to help raise money for mesothelioma research,” said Belluck. “There are several other law firms who sponsor the event but we are the only firm that also shows up to kayak.”
The event grew out of a father’s love of his daughter who was diagnosed with peritoneal mesothelioma as a teenager and was given just twelve months to live. Mark Wells, whose daughter, Linda, was diagnosed with peritoneal mesothelioma at age 16, organizes the annual Kayaking4Meso event to raise awareness and Money for Mesothelioma Research.
“Linda is my inspiration for doing what I do,” said Wells in an email to Mesothelioma Help. “Realizing there was no cure, I figured the next best thing to do was to raise awareness and money for research.”
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Mark Wells, Kayaking4Meso Organizer
“Don’t ever give up hope. Research is going on every day and new trials are available often. I will continue to raise awareness and money for research.”
Peritoneal mesothelioma is a form of cancer that is almost always caused by asbestos exposure and affects the lining of the abdomen. While there are close to 3,000 cases of all forms of mesothelioma diagnosed in the U.S. each year, less than 10% of those are peritoneal. The cancer, which is often associated with former industrial workers who were exposed to asbestos decades ago, is virtually unheard of among young adults.
Linda is the youngest person Wells knows who has been diagnosed with mesothelioma. She has battled the disease for “almost half her life and is now one of the longest survivors I know,” said Wells. Linda has lived with the disease for 13 years.
“She is doing as well as can be expected for what she’s been thru,” Wells added.
Raising Money to Find a Mesothelioma Cure
In 2011, Mark Wells and two friends paddled from Schuylerville to Mechanicville. The trio kayaked about 16 miles through locks 4 and 3. Five years later, over 150 boaters lined up to kayak down the Hudson River from Admiral’s Marina in Stillwater thru Mechanicville, ending at Lighthouse Park in Halfmoon. The eight mile paddle took the group thru Locks 4, 3 and 2 during the 3.5 hour excursion.
“This year was especially rewarding to see over 150 kayakers come out to attend and support our cause, including Joe Belluck himself,” Wells said. “Our biggest event ever and Joe has been a part of it every year. I think his commitment to help us from the beginning inspired me into making this a successful event,” said Wells. “It’s made a huge difference to me and the success of our event.”
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“This is symbolic of what makes our law firm different from the other lawyers that represent people with mesothelioma – whether it’s participating in an event like this or representing one of our clients – we fully commit our time and energy.”
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The money raised during the event goes to the Mesothelioma Applied Research Foundation. The organization is the only non-profit organization dedicated to ending mesothelioma and the suffering caused by it, according to the Meso Foundation’s website.
Wells said the Meso Foundation has helped his and many other families with knowledge and advocacy by directing them to doctors, hospitals, and clinical trials.
Wells said the events have raised more than $40,000 to date to aid in research to find a cure.
“I think the thing that impacts me most is the meso family that we have created with this event, with six meso survivors attending and over 30 family members,” said Wells. “I think it means a lot to all us to get together to support each other.”
Asbestos Along the Hudson River
Belluck, a mesothelioma lawyer who has been advocating for mesothelioma patients and their families for over 15 years, finds the irony in the event organized to raise money to fight an asbestos-caused disease. He fights for compensation for victims of asbestos-related diseases, he says, and the route took the paddlers through three of the Champlain Canal Locks that allowed so many of the companies that the firm’s clients worked at to prosper.
“This stretch of the Hudson north of Albany is beautiful, the leaves have begun to turn and it’s a gorgeous fall day,” Belluck said of last Saturday’s event. “But, we also paddled past some of the factories where our clients worked, and one area of the Hudson where the soil is being dredged and renewed from the toxic substances that not only injured our clients but also poisoned this beautiful river. And perhaps that is a good metaphor for why we do this work.”
Mesothelioma is an asbestos-related cancer that is usually diagnosed in older men – after spending years as trade workers such as insulators, plumbers and pipefitters, electricians and sheet metal workers. With an extended incubation period, it is often not diagnosed for decades after asbestos exposure. Approximately 2,500 to 3,000 people in the United States are diagnosed with mesothelioma each year.
Sources :
- Kayaking4Meso
http://www.kayaking4meso.org - Meso Foundation’s website
http://www.curemeso.org/site/c.duIWJfNQKiL8G/b.8578185/k.6D0E/Meso_Foundation_Symposium.htm
Special Counsel Blasts VA Over Whistleblower Treatment
Many of the recent stories about Department of Veteran Affairs mistreatment of veterans have come to light thanks to whistleblowers who revealed VA practices such as the scandal over dangerous delays in patient care. In response to the scandal, legislation was passed that made it easier to fire underperforming VA administrators. But in a letter (https://archive.azcentral.com/persistent/icimages/politics/0918-letter-to-obama.pdf) to President Obama from the U.S. Office on Special Counsel (OSC), OSC points out instances of the VA punishing whistleblowers while failing to discipline VA leadership.
The September 17th OSC letter begins by describing the treatment of Dr. Katherine Mitchell, a VA doctor in Phoenix who revealed that none of the emergency department (ED) nurses at the Carl T. Hayden VA Medical Center had received nationally-recognized, comprehensive triage training and that only 11 of 31 ED nurses had received any triage training whatsoever. Mitchell tied this lack of training to more than 100 specific instances where improper nurse training led to “dangerous delays in care”—an assertion substantiated by the VA’s Office of the Medical Inspector, which found that lapses in ED triage “constitute a significant risk to public health and safety.”
Mitchell, though, rather than being supported by senior VA staff, was “investigated, transferred, and harassed,” reports AZCentral (https://www.azcentral.com/story/news/arizona/investigations/2015/09/17/va-failure-protect-whistleblowers-draws-strong-rebuke-special-counsel/72362888/), while staff leaders went undisciplined.
“I am concerned by the VA’s decision to take no disciplinary action against responsible officials,” writes the OSC. “The lack of accountability for Haden VAMC leaders sends the wrong message to the veterans served by this facility.”
Such lack of action, asserts the OSC, may discourage whistleblowers from coming forward in the future. It also, says OSC, stands in stark contrast to the treatment of VA whistleblowers who “The VA has attempted to fire or suspend for minor indiscretions,” a trend that, “chills other employees from stepping forward to report concerns.”
OSC goes on to describe in its letter to the President other instances of VA misconduct that resulted in no significant leadership discipline, including:
- Falsification of veteran counseling session records by the manager of a VA clinic in Washington State
- Improper monitoring of an OMI investigation of patient care problems by a manager at a West Virginia VAMC
- Inaccurate recording of patient information by a Montgomery, Alabama VA physician
OSC compares these cases with several instances of whistleblowers being fired for minor infractions that include eating expired sandwiches.
The VA Access, Choice, and Accountability Act of 2014—passed in response to the scandal that broke last summer over the patient wait-time crisis at more than 100 VA hospitals—made it easier for the VA to fire or demote senior VA employees. It was revealed this spring, however, that just one person was had been fired in connection with the scandal.
More recently, the Veterans Accountability Act of 2015, which supporters say gives greater protection to whistleblowers, passed the House and is currently being debated in the senate. The Act includes disciplinary provisions for mangers who retaliate against employees, according to an opinion piece published in The Hill (http://thehill.com/policy/energy-environment/235504-boxer-introduces-her-own-chemical-reform-legislation).
Maintenance Worker Blows Whistle on Asbestos Exposure
An earlier letter issued by OSC to the President details how a maintenance worker at a San Antonio VAMC blew the whistle on unsafe asbestos work that exposed him and others to the carcinogenic mineral fiber.
As the letter details, the San Antonio VAMC management “violated procedures governing the safe handling of asbestos-containing materials and failed to provide medical surveillance for employees exposed to asbestos, endangering their health in safety.” Management, for example, knowingly ordered employees to perform maintenance work on asbestos materials without providing appropriate precautions or safety equipment.
Radiographic examination of the whistleblower has revealed chest abnormalities consistent with exposure to asbestos, which can causemesothelioma and lung cancer.
Belluck & Fox, LLP Helps Veterans
The New York law firm of Belluck & Fox, LLP represents victims of asbestos disease who served in the U.S. Navy. We’ve recovered tens of millions of dollars for veterans and their families. We also assist veterans with VA compensation claims.
Learn more about how Belluck & Fox, LLP helps veterans during a free case review with one of our nationally-recognized attorneys.
I’m Proud to Support the Mesothelioma Applied Research Foundation
Eight months after my Dad’s diagnosis of pleural mesothelioma, my family held its first fundraiser to benefit the Mesothelioma Applied Research Foundation. They helped us so much, we felt it imperative to do what we could to say thank you. Dad was intensely involved with the planning and execution of the basket raffle that we held at our hometown’s yearly event, Dunbar Community Fest. He was sort of the ambassador that day, chatting with everyone who passed by and updating them on his progress and why we were there. He was proud to help.
Even after Dad’s passing in October of 2013, my family continues to support The Meso Foundation however we can. Working with them is an amazing way to give back and to honor the memory of my selfless father who always went above and beyond to help others. Working with others in our fundraising community inspires me. I see so many working together toward a common goal of eradicating this disease and spreading awareness and hope.
I have gotten to know amazing individuals through The Meso Foundation. We are reluctant members of a group of people who have been touched by mesothelioma in some way. Though unfortunate, we choose to rise above it and do everything possible to spare anyone else from the pain we have endured.
I am proud to be a member of The Meso Foundation’s Rising Leaders Council. We are an assembly of young people dedicated to raising funds and awareness, advocating on behalf of those still battling, those who have lost their fight with mesothelioma, and those who love them.
When entering into his clinical trial a little over two years ago, Dad told me that even though it might not help him, it may be able to help someone else. Mesothelioma took my father from me, but it did not take away his legacy of love and compassion for others. When I feel like I’m too busy to help or if it seems like it’s too much to take on, I remember him and all that he was. He pushes me to continue this endeavor.
Please consider joining me and so many others in this fight. For more information, contact the Mesothelioma Applied Research Foundation and visit their website at www.curemeso.org.
Know more about Mesothelioma and how you can deal with it.
Remembering All The Precious “Things” I Shared With My Dad
Every morning before my husband leaves for work, he gives our daughter her first bottle of the day. At night, they spend time together that has been dubbed “Daddy in the Evening.” This is their special time, it’s their “thing.” As I watch them together, I wonder what else they will do together; it makes me think back to the relationship I had with my Dad.
Dad and I had a million “things.” We had nicknames for each other that would change periodically. Every night before I went to bed, he would carry me to his closet and help him pick out his shirt for the next day at work.
Perhaps the biggest one, and the one most famous in our family, was Saturday morning. It was a well-known fact that that was our time. My Mom would work three Saturdays a month, and we loved that (sorry, Mom!). We would get up early, head out to breakfast, and then the day was ours. So many of my favorite memories with Dad are from those lazy mornings spent driving around, talking about anything and everything. Once my husband came along, he was blessed to take part in these times as well. I think Dad loved carrying on our tradition and sharing it with the newest member of our family.
While I would give anything for one more Saturday morning with Dad, I realize how fortunate I am to have had a father willing and happy to spend that time with me. I’m proud to say that my little girl will have the same type of Dad, loving her unconditionally and making the littlest thing into the boldest memory.
Even though I still struggle with the fact that my Dad is gone, I realize that I’ll always have our “things;” the littlest things that made the biggest difference.
Mesothelioma Survivor Lou Williams Steps Up Her Drug Advocacy Efforts
Lou Williams wants to make the drug that has helped her survive mesothelioma affordable for her fellow Australians struggling with the asbestos cancer.
Lou lost her father to mesothelioma in 1985 and she has battled the disease herself for nearly 13 years. With the help of a new drug, Keytruda, Lou’s tumors have begun shrinking and she has a new lease on life.
“Keytruda has given me back my life, as my body was literally shutting down,” Lou told MesotheliomaHelp via email.
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“I am now once again living my life with quality, strength and determination.”
As her strength returns, so does her resolve to fight for other mesothelioma victims. She is now focused on making Keytruda available to Aussies at a reasonable cost.
On Sept. 3 Lou will have her eighth dose of Keytruda, an immunotherapy drug from Merck approved in the U.S. and Australia for melanoma, but not yet approved in either country for mesothelioma. For Australians, that means a mesothelioma patient must pay thousands of dollars per dose, administered every three weeks—a deal breaker for many.
Lou Working With Australia’s Pharmaceutical Benefits Scheme
Keytruda is being touted as one of the biggest breakthroughs in mesothelioma treatment. In the simplest of explanations, Keytruda enhances the body’s immune response to cancer, allowing natural defense mechanisms to kick in and fight mesothelioma tumors. A recent U.S. clinical trial found Keytruda to be effective in controlling mesothelioma tumors in three-fourths of patients, leading researchers to say the results are “encouraging.”
After having exhausted all of her treatment options earlier this year and being at death’s door, Lou has, with regular Keytruda doses, rebounded beyond what she and others thought was possible. She said in an August 20 Examiner article that her palliative care nurse, husband and oncologist all say her recovery has been “miraculous.”
It has also been expensive. Lou acknowledged in a recent blog post that having quality of life back is priceless, but “Our credit card is taking a battering.”
To make Keytruda more accessible for other mesothelioma sufferers, Lou’s goal is to get the drug added to the Pharmaceutical Benefits Scheme (PBS). This would allow Australian oncologists to offer the treatment to mesothelioma patients free of charge or for a negligible amount.
The PBS is a government run service available to all Australian residents who hold a current Medicare card. Through the PBS, the Australian government subsidizes the cost of medicine for most medical conditions.
“We need to have Keytruda in the PBS list alongside melanoma so others diagnosed with mesothelioma can have another treatment option to discuss with their oncologist,” Lou said.
Lou and her husband met with their local Federal Member of Parliament in late July to get the PBS to accept Keytruda on the mesothelioma treatment list. She reported in her August 4 post that her local Member Parliament’s office told her that they have made initial contact with the drug company and are anticipating discussions later this month, a development Lou described as “very promising”.
Lou is passionate about seeing asbestos banned globally. Her work with the Asbestos Diseases Foundation of Australia, Asbestos Disease Awareness Organization of the U.S., and countless other organizations, as well as her non-stop media tour to get the word out about the dangers of asbestos, has impacted people worldwide.
But for Lou, it still is not enough.
“It would mean the world to me knowing that those diagnosed with mesothelioma can have freedom and peace of mind choice without the worry of cost to consider,” said Lou.
Follow Lou’s mesothelioma and advocacy battle on her blog at “Asbestos – Living with Mesothelioma in Australia – Louise (Lou) Williams.”
You can contact Lou at [email protected].
Photo Credit: The Examiner
Sources:
- Pharmaceutical Benefits Scheme
http://www.pbs.gov.au/info/about-the-pbs#What_are_the_current_patient_fees_and_charges
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