Category: Advocacy

Memorial Day: One-Third of Mesothelioma Victims are Veterans

• Lisa Hyde-Barrett
• Advocacy, Nurse's Corner

The end of May is when we stop as a country to remember our fallen soldiers. As the nation pays tribute to those that have sacrificed their lives for our freedom, this Memorial Day has special meaning.

Memorial Day is a day to remember and honor all military service members that have died while serving our country. Our heroes that gave their lives for our freedom and our way of life will never be forgotten. Their stories need to be told and listened to. We hope that their sacrifice is remembered and honored by  a grateful nation that collectively stops and gives thanks, for their ultimate sacrifice. 

This year, for the mesothelioma community, in which one third of the victims of this deadly cancer are veterans, we reflect on the continued toll that serving our country may take on service members decades later. By exposure to a known carcinogen, asbestos, the leading cause of malignant mesothelioma in the service of our country decades earlier, this group of soldiers and their families also end up  sacrificing their lives.

Asbestos is still not banned in the United States. The knowledge that it causes deadly diseases that can kill people has been known for decades. For decades advocates have been working to get the importing of asbestos for use in products banned in the United States with no success.  This year we are closer than ever to finally realizing this common sense ban. The bill to ban asbestos is progressing slowly through the Congress but only after endless work by tireless advocates. Advocates whose family members paid with the price of their lives, a fight that they continue to fight so that you or your family member might not suffer the same preventable fate.

Why in this great country of ours are we not able to agree that what is proven that asbestos kills as does guns? There is no need for asbestos or for certain guns. Banning both will prevent needless tragedies, a great majority of Americans agree with getting that done. Why is it acceptable that senseless killing of children while at school and continued use of a known carcinogen to slowly kill is accepted?

Pray that our leaders will have the courage to come together to protect public safety by supporting a total and complete ban of asbestos and the regulation of guns. All of us deserve no less.

Memorial Day is the traditional start of summer with families getting together and barbecues.  Sometimes the meaning of this holiday can be lost. Take the time to remember those who have gone before us. Say their names, tell their stories. Hold your loved ones tight.

Mesothelioma on International Rare Disease Day

• Lisa Hyde-Barrett
• Advocacy

Today is Rare Disease Day. This day is set aside as a worldwide event. The first international Rare Disease Day that included the United States was held in 2009. The theme this year is Patients and Researchers Partners for Life.

There are over 7,000 rare diseases recognized internationally, and approximately 90 percent still lack effective treatment. Eighty percent of them have identified genetic origins, and 75 percent of rare diseases affect children. Raising awareness that these conditions exist and that they affect people all over can shine a light on the need for further research.  

In 1983, when Congress passed the Orphan Drug Act of 1983, rare diseases were called orphan diseases because drug companies were not interested in developing treatments for them. This bill created financial incentives to encourage the development of treatment  and a definition of what a rare disease is. The definition of a rare disease in the United States is  a condition that affects fewer than 200,000 people. The definition is different in Europe where a rare disease is a disease that affects 1 in 2,000 people.

Malignant mesothelioma is a rare disease. A rare disease with an active community and supporters. The progress that has been made towards a cure for mesothelioma has been made by research. Research is slow and expensive.

The Mesothelioma Applied Research Foundation has raised millions for research towards a cure. In addition the Foundation supports patients and families throughout their journey with mesothelioma. Awareness and advocacy, continued over time, is important to bring attention to a rare disease like malignant mesothelioma. 

The overall goal of Rare Disease Day is to improve the knowledge of the general public on what is a rare disease. The National Organization of Rare Disease is raising awareness by encouraging people to light up buildings on February 28th. Their motto is “alone we are rare together we are strong.”

On Monday, February 28th, take a minute to learn about what challenges people with rare diseases face on a day to day basis. See the possibilities that a small community can accomplish when we all work together to a common goal.

This Labor Day, Let’s Reflect on Those Exposed to Asbestos on the Job

• Lisa Hyde-Barrett
• Advocacy

Today we reflect on what Labor Day is and has become.

According to the official definition from the Department of Labor website, “Labor Day is an annual holiday to celebrate the economic and social contributions of workers to the strength, prosperity, and well-being of the country.”

In the United States, Labor Day is a federal holiday currently observed on the first Monday of September. The first Labor Day was celebrated on September 5,1882.  Labor Day has its origins in the labor union movement which advised 8 hours for work, 8 hours for recreation and 8 hours for rest. Through their movement they help shine a light on workers conditions and change laws to regulate working conditions.

Labor Day is also the unofficial end to summer often that is what many people associated with this holiday. As we enjoy our families and friends this last unofficial weekend of summer, we should stop and remember the people who are battling illnesses related to their occupations.

Asbestos is the number one cause of work related deaths worldwide. More than 39,000 lives are lost to asbestos related illnesses each year. Although many think asbestos has been banned in the United States 1.3 million workers are at risk of exposure.

Malignant mesothelioma and asbestos related diseases have historically affected the working man and women. From the asbestos mines, to servicemen serving our country the exposure to asbestos through insulation, and the many products made with asbestos  has continued to affect the health of many workers.

People that are diagnosed with Malignant Mesothelioma can often pinpoint their exposures to jobs held many years ago. The incubation period from exposure to asbestos and development of Malignant Mesothelioma can be as long as 50 years.

Enjoy the holiday and hopefully in the not so distant future we can add banning asbestos to one of the movements that contributed to improved workers health and safety.

Asbestos Isn’t Banned in America – Yet

• Lisa Hyde-Barrett
• Advocacy, Asbestos Exposure

It is easy to understand why so many people falsely assume that asbestos is banned in the United States. There are decades of research that prove that toxic fibrous asbestos crystals can cause mesothelioma and lung cancer in even the smallest quantities. While many of asbestos’ applications are now limited, there are unfortunately still loopholes in current legislation.

In 1989, there was a partial ban on manufacturing, importing, processing, and distributing products that contained asbestos, as well as a ban to prevent asbestos from being utilized for new purposes. The asbestos industry fought back, and so gaps in the law prevail.

Consumer products such as baby powder, children’s makeup, and crayons continue to be flagged as having the carcinogen. Manufacturers of these products are not required to warn consumers if asbestos accounts for less than one percent of ingredients, even though it is known that even small amounts can cause cancer. They should be required to do so.

America is the only developed country to have not yet imposed a complete ban on asbestos.

According to the U.S. Geological Survey, while the last American manufacturer of asbestos ceased operations in 2002, the United States imported 681 tons of asbestos in 2018 with Russia as its sole source. Beyond this, the USGS 2020 Mineral Commodity Summary of asbestos noted that some asbestos minerals are also imported as part of manufactured products, “including brake blocks for use in the oil industry, rubber sheets for gaskets used to create a chemical containment seal in the production of titanium dioxide, certain other types of preformed gaskets, and some vehicle friction products.”

Organizations like the Mesothelioma Applied Research Foundation (CureMeso) and the Asbestos Disease Awareness Organization (ADAO) are currently leading the battle to finally ban asbestos in the United States. Linda Reinstein founded the ADAO in 2004 in response to her husband’s diagnosis of mesothelioma, and continues to this day to raise public awareness about the dangers of exposure and to work towards a global asbestos ban. 

The Alan Reinstein Ban Asbestos Now Act of 2019 is currently in committee with both the U.S. Senate and House of Representatives, and is ready for a vote of the full house. The bill, if enacted, “prohibits the manufacturing, processing, and distribution of asbestos or any mixture or article containing asbestos.” ADAO has been lobbying for the bill to come up for a vote in both chambers of congress.

If you would like to support efforts to get the bill passed to ban asbestos in America, you can sign ADAO’s petition on Change.org or make a donation to them or CureMeso today.

Putting Mesothelioma Front and Center on World Cancer Day

• Nancy Meredith
• Advocacy

Today, February 4, is an international day set aside to unite the world’s population in the fight against cancer. With the tagline ‘We can. I can.’,” World Cancer Day 2018 is focused on how everyone – as a collective or as individuals – can do their part to reduce the global burden of cancer. This day is a fitting time to tell your friends, and anyone you meet, about mesothelioma and ways in which they can support the mesothelioma community in the quest to help find a cure.

World Cancer Day’s primary objective is to get as many people as possible around the globe to talk about cancer. Organized by the Union for International Cancer Control, the world’s largest cancer organization headquartered in Switzerland, the day “aims to save millions of preventable deaths each year by raising awareness and education about the disease, pressing governments and individuals across the world to take action.”

The day is a time to reflect on deaths caused by mesothelioma, a preventable cancer, and renew efforts to eliminate recognized cancer causes. With thousands of families across the globe losing loved ones to mesothelioma, it is the time to raise awareness of the slow-developing asbestos-caused cancer.

Mesothelioma is a serious disease diagnosed in close to 3,000 Americans each year. As with other environmental cancers, mesothelioma is an entirely preventable disease. Currently there is no known cure for the disease, but ongoing research is the key to finding the breakthrough that can mean the difference between life and death.

Today, about 125 million people worldwide are exposed to asbestos, primarily in the workplace or by living near factories that handle asbestos. Microscopic asbestos fibers can accumulate in the lung and cause mesothelioma, lung cancer and asbestosis, a chronic scarring of the lung.

There are nearly 500 events planned for World Cancer Day 2018. Check here for an event near you. In addition, donations can be made to a mesothelioma organization where your dollars will go towards mesothelioma research. Consider making a donation to the Mesothelioma Applied Research Foundation in honor of Don Smitley, who lost his life to mesothelioma. His daughter Jennifer Gelsick, who is a “Faces of Mesothelioma” author, and her family established a fund in Smitley’s name to help raise much-needed money for mesothelioma research. Contributions can be made in Don’s memory at www.curemeso.com/fundraising/smitley.

“World Cancer Day is a chance to reflect on what you can do, make a pledge and take action. Whatever you choose to do ‘We can. I can.’ make a difference to the fight against cancer.”

For more information visit WorldCancerDay.org.

Sources :

• Union for International Cancer Control,
  https://www.uicc.org/
• Mesothelioma Applied Research Foundation
  http://www.curemeso.org/
• Union for International Cancer Control
  https://www.uicc.org/