Whether you have been touched by mesothelioma or not, you can always get involved in a variety of ways. Charitable and health organizations are constantly looking for more effective treatment and diagnostic methods for mesothelioma. They also readily accept donations. It’s also always important to raise mesothelioma awareness in one way or another.
Whether you talk about it with a friend or organize a mesothelioma or asbestos awareness event, you can always play a role in bringing greater consciousness of the disease to your social circle.
Many people want to help, but don’t know how to get involved with mesothelioma or asbestos awareness. Some may not even know why awareness of the disease is important. Of course, there are numerous reasons why this disease needs widespread recognition.
Why is Mesothelioma Awareness Important?
If you have been diagnosed with mesothelioma or know someone who has, then you likely already understand why mesothelioma awareness is so important. But, for those who are unfamiliar with the disease, it can often become a punchline because of the frequent television commercials that discuss it.
There are actually countless reasons why raising awareness of mesothelioma is vital, including:
- Early detection makes the disease more treatable
- Mesothelioma is caused by exposure to asbestos, which is still legal in the United States
- Funding for research is an important step in finding a cure
- Legislation against asbestos has been woefully insufficient
Importance of Early Detection
One reason why mesothelioma is so deadly is that it often doesn’t get diagnosed until it is in the later stages. Mesothelioma is only diagnosed in about 3,000 Americans per year, which is a small number compared to other types of cancer. Many early symptoms of mesothelioma are minor and non-specific to the disease. Some mesothelioma sufferers do not even seek a doctor’s counsel until it’s too late. Even when they do, the disease is often overlooked as an option because doctors may think the symptoms are the result of a more common disease.
If mesothelioma awareness were more widespread, it may improve diagnoses and help prevent the illness from taking the lives of so many unsuspecting victims. In fact, people diagnosed with stage 1 mesothelioma have a much better survival rate than an individual diagnosed with stage 4 mesothelioma.
Asbestos is Still Prevalent
Awareness is also important because of mesothelioma’s primary cause: asbestos. There is no other known source for the development of mesothelioma. Asbestos was used in great abundance in the United States and throughout the world from the late 19th century until the 1970s. As a fireproofing material, asbestos worked wonders. But, its toxic nature left millions of people vulnerable to mesothelioma and other asbestos-related diseases.
In the United States, asbestos is still technically legal, although its production and use in new products are virtually non-existent. Still, you can find asbestos in hundreds of thousands of buildings built prior to the 1980s, meaning that exposure is still possible. For workers in certain industries like construction, the risk of asbestos exposure and ultimately mesothelioma is even higher.
Another issue in regard to mesothelioma is its latency period. This term describes the amount of time it takes for mesothelioma or any other disease to develop after exposure to a cancer-causing agent (in this case, asbestos). The latency period for mesothelioma can range anywhere from 10 to 50 years. So, someone who was exposed to asbestos on the job in the 1970s or 80s may be at risk of developing mesothelioma now.
Some professions that were at high risk, include:
- Construction workers
- Power plant workers
- Oil refinery workers
- Shipyard workers
- Industrial plant workers
- Factory workers
With greater awareness, some former and current workers who were exposed to asbestos may be more inclined to seek out health screenings.
Funding for Mesothelioma Research
In order for researchers, medical professionals, and scientists to discover more effective treatments for mesothelioma, they need money. Better awareness for the disease ensures that mesothelioma donations continue to roll in.
There are numerous foundations and organizations who have devoted a great deal of their energy toward mesothelioma research, including:
- The Meso Foundation
- Mavis Nye Foundation
- International Mesothelioma Program
In addition to research, these organizations also provide resources to mesothelioma patients, caregivers, and family members. Without proper awareness, any mesothelioma charity or foundation will not be able to last.
Lack of an Asbestos Ban
Another benefit of increased awareness is, perhaps, better legislation in regard to an asbestos ban in the United States. The Environmental Protection Agency (EPA) tried to enact a ban in 1989, but the courts shot it down only two years later. Since then, Congress has produced a handful of failed attempts at banning the substance.
Greater awareness of the substance’s pernicious effects (which extend beyond mesothelioma) may help spur better legislation that protects citizens from asbestos’ dangers.
How to Get Involved with Mesothelioma Awareness
If you want to get involved with mesothelioma and asbestos in any way, there are many avenues for doing just that. There are many different organizations and fundraisers that you can donate to. You can also participate in or even organize an event.
On a base level, simply communicating with your friends and family about the dangers of asbestos and the realities of mesothelioma can go a long way. Below, we’ll discuss a few organizations and events that are looking for either donations or participation (or both).
The Meso Foundation
Formerly the Mesothelioma Applied Research Foundation (MARF), the Meso Foundation is one of the largest national organizations dedicated to educating people about mesothelioma. Of course, its main goal is to bring about the end of the disease entirely, which often means spreading awareness, fighting for an asbestos ban, and funding research into treatments and diagnostic procedures.
The organization also helps mesothelioma patients and their families find resources, support groups, and other information about the disease. It is one of the few foundations in the United States that lobbies for mesothelioma funding from the government.
Some statistics about the group include:
- It has funded $10 million in mesothelioma research
- It assists over 600 people monthly
- For every dollar it receives in donations, 83 cents goes toward mesothelioma-related programs
- It has received over $15 million in research grants from the government
The Meso Foundation also created the National Mesothelioma Awareness Day in 2004 which is a federally recognized awareness day and occurs every year on September 26. On that day, fundraisers and events are often held across the country. You can find one close to you or even organize an event on your own.
Some mesothelioma-related events that occur on that day include:
- Fun runs
- Picnics in the park
- Golf tournaments
- Standard fundraisers
It’s also a great day to simply spread the word about mesothelioma and its major cause, asbestos. Talk to your friends, family members, neighbors, co-workers, and anyone else you know and ensures that they understand the unfortunate effects of mesothelioma. The official color of National Mesothelioma Awareness Day is blue, so wear it and encourage others to do so, as well.
In addition to all of that, the Meso Foundation also holds a semiannual conference called the International Symposium on Malignant Mesothelioma.
The conference discusses a variety of mesothelioma-related topics including:
- Medical and scientific advances
- New treatment breakthroughs
- Clinical trials
- Support for patients and families
Discussions and lectures are usually given by experts in the field of mesothelioma research, meaning that you are getting the most up-to-date information about the disease. Attendees are often current patients, family members, caregivers, medical professionals, and individuals who have lost someone to mesothelioma.
Asbestos Disease Awareness Organization (ADAO)
The Asbestos Disease Awareness Organization (ADAO) is a non-profit organization that does exactly what its name says: it raises awareness for asbestos diseases. Mesothelioma isn’t the only disease that asbestos can cause.
In fact, it can be responsible for or contribute to any of the following:
- Lung cancer
- Laryngeal cancer
- Ovarian cancer
The toxin is clearly an extreme danger for anyone who comes into contact with it. The ADAO, of course, has advocated for a global ban on the substance and has remained a major voice for anyone affected by asbestos. Since its founding in 2004, the ADAO has become a leader in providing quality education and creating community initiatives that look to combat asbestos.
The ADAO also created the Global Asbestos Awareness Week (GAAW) which occurs every year between April 1 and 7. The week has helped produce 13 resolutions and has also gotten 5 United States Surgeon General warnings about asbestos enacted. During or around GAAW, the ADAO also holds the International Asbestos Awareness and Prevention Conference.
The conference typically calls for:
- The permanent global ban on mining, production, and sale of asbestos and asbestos products
- Asbestos exposure prevention
- Further compliance with asbestos laws and regulations already on the books
Clearly, the ADAO is a great asbestos and mesothelioma charity organization that deserves support.
International Mesothelioma Program (IMP)
The International Mesothelioma Program (IMP) is the world’s largest program focused on mesothelioma treatment and research. It was founded as a joint venture between the Brigham and Women’s Hospital, the Harvard University School of Medicine, and the Dana Farber Cancer Institute. Its goal is to provide the highest quality and most up-to-date treatments to mesothelioma patients from around the world. It is also on the cutting edge of research dedicated to finding a cure for mesothelioma.
Care is provided to patients in state-of-the-art facilities. The IMP takes a broad approach toward treating the disease, and its medical staff includes:
- Medical and radiation oncologists
- Social workers
Research attained by the program is also used to identify areas in the world where mesothelioma incidence rates are high. It has set up satellite programs in areas where mesothelioma prevalence is high. Their research is also cross-referenced with historical data so that they can fully understand the disease and how it progresses. All of this works together in an effort to improve mesothelioma screenings, diagnostic procedures, and treatments. The IMP occasionally holds fundraisers to accrue funds for research. It is also always open for donations.
International Mesothelioma Interest Group (IMIG)
The International Mesothelioma Interest Group (IMIG) was first founded in 1991 at a conference for medical specialists. Up to that point, most mesothelioma foundations or groups focused largely on mesothelioma’s relationship to asbestos.
The IMIG was formed to look at the “clinical, biological, and epidemiological aspects of malignant mesothelioma” instead of its main causes. Of course, this has led them to breakthroughs in research that have inched the mesothelioma community closer to a cure. Each year, the IMIG holds a conference composed of medical researchers, mesothelioma specialists, scientists, patients, and others to deliver news about updates in mesothelioma research.
Canadian Mesothelioma Foundation (CMF)
The Canadian Mesothelioma Foundation (CMF) is a registered mesothelioma charity that looks to raise awareness and provide support to patients with mesothelioma in Canada. It was founded in 2008 by a group of people who had been adversely affected by the disease either through the loss of a loved one or by experiencing it themselves. It helps connect patients with cancer centers and other institutions that hold expertise in treating mesothelioma. Its network also includes hospitals in the United States.
The CMF frequently looks to raise funds for awareness of the disease (and its cause), the advancement of treatment options, and for individual medical practitioners looking to become experts in the disease.
Mavis Nye Foundation
The Mavis Nye Foundation is a United Kingdom-based mesothelioma charity that is actually run by a mesothelioma survivor herself. Mavis Nye was diagnosed with pleural mesothelioma in 2009 and was given only 3 months to live. After extensive treatments including a clinical trial in which she received the immunotherapy drug, pembrolizumab (Keytruda), Nye managed to go into full remission.
In 2017, she set up the Mavis Nye Foundation to help spread awareness and be an advocate for people diagnosed with mesothelioma and other asbestos-related diseases. The charity also seeks to pay for mesothelioma patients who cannot afford their medical bills, fund clinical research, and provide education and training to those who seek it out.
These foundations and charities only offer a few ways to get involved with mesothelioma. There are many other options out there, including contacting your local cancer center or organizing your own fundraiser or event.