Category: Featured News
18th Annual Mesothelioma Awareness Day
Today is the 18th Annual Mesothelioma Awareness Day. This day is set aside to raise awareness of malignant mesothelioma and the need for research.
Malignant mesothelioma is a rare disease that affects around 3,000 people a year in the United States. A disease is considered rare if it affects less than 200,000 Americans a year.
The leading cause of malignant mesothelioma is exposure to asbestos. The exposure can happen as far as 50 years in the past. A lot of Americans assume that this is a disease that does not happen anymore because they think asbestos is banned. Neither of these premises are true.
Through awareness and research progress has been made. Research has given patients options that were not in play in the past. We have seen the direct role that research has played in moving the survivability of patients with mesothelioma from months to living with mesothelioma as a chronic disease.
The mesothelioma community is an active community. Organizing a group to successfully spread awareness is a challenge.
The main group behind the Mesothelioma Awareness Day is the Mesothelioma Applied Research Foundation. They raise awareness and fund research that hopefully will lead to a cure. The Foundation was instrumental in starting and growing this annual day.
Some of the ways that we can all spread the word about malignant mesothelioma is to wear blue on Sunday, support local efforts like walks, and support social media efforts to share the message. Individually we can talk with people about the disease and the devastation that it inflicts on families and help spread facts of this disease.
With the pandemic we have seen what awareness and sense of urgency can do. Making scientific research a focus and a national priority can help further the search for a cure. Research and support of research is the key to curing mesothelioma.
On Sunday, September 26, 2021 spend some time spreading the word!
Like America, Transitions in Care are Critical for Mesothelioma Patients
As the United States awaits the peaceful transfer of power from one administration to another, transitions are at the forefront of the news. We are all being reminded of what an important role that transitions play in life. Whether the transitions be personal or public, transitions are times of change. Transitions involve communication and education, they can be physical or emotional.
The importance of transitions in dealing with the medical system cannot be understated. Transitions of care have been studied extensively in the health care system and identified as an area that needs improvement.
Different factors that can influence a successful transition of care are communication breakdown, patient education breakdown, and an accountability breakdown.
Being diagnosed with a serious illness or cancer like malignant mesothelioma can change the person’s life immediately.
A pleural mesothelioma patient that we recently visited was describing her journey with the disease. Her first symptom was a dry cough. The cough did not go away. Her family members urged her to go to her PCP and get the cough investigated. She did and was diagnosed with malignant mesothelioma within a few months. She was eligible for and had surgery.
Her journey has been full of transitions. As she spoke of her journey and what she had been through, one of the most challenging things for her was thinking of herself as being a patient with a serious cancer. She is an active person, had been on no medications, and the last thing she thought that her dry cough was from was a serious cancer.
As our patient continues on her journey with mesothelioma, her ability to deal with the disease and the change in the flow of her life are ongoing. As she adjusts to living with cancer and looks forward, one thing is certain: her life and her family’s lives have been changed.
We hope as she transitions to her “new normal” – as we hope for our country – and continues to be supported in her physical and emotional journey.
November is National Family Caregivers Month
October was Health Literacy Month and November is National Family Caregivers Month. Both of these special months highlight the importance of education, support, and understanding when dealing with or caring for a loved one. When faced with a diagnosis of malignant mesothelioma, understanding of the disease and what to look for helps both the patient and the caregiver.
The definition of health literacy from the Affordable Care Act of 2010 is “the degree to which an individual has the capacity to obtain, communicate, process, and understand basic health information and services to make health decisions.”
There is nothing simple about understanding the disease of malignant mesothelioma. From diagnosis through treatment the terminology and descriptions of the disease are difficult to understand and to even pronounce. The process of being diagnosed is usually after weeks or months of tests and scans, and after other common illnesses are ruled out. Health literacy can become an issue immediately.
A “family caregiver” is considered anyone who does not get paid but helps another person do what they can no longer do without assistance. Family caregivers provide extensive assistance which can include medications, shopping, preparing meals, cleaning, advocating, coordinating, educating – the list is very long, and the contributions vital.
For a rare serious disease like malignant mesothelioma, it is important for patients and families to understand what they are dealing with. The options for treatment can be confusing and the plan can change with further testing. The importance of being able to understand and trust your team is vital. Family caregivers are the link between the patient and their medical team. Having someone with you during this journey can be life saving. In order to give the patient the best possible chance for recovery and quality time, the family caregiver’s contribution and understanding of the disease and the patient is very important and often both overlooked and under appreciated.
Looking around, the number of people who in addition to maintaining their jobs and lives also provide care for someone else is staggering. The term “invisible army” has been given to these caregivers who often are not recognized.
We honor and thank all the family caregivers for their huge contribution to ongoing care for another person, family or not!
Residents of the Town of Asbestos in Canada Consider New Name
With the internet, social media, and many other modern forms of communication, everyone’s “brand” and naming has taken on increased importance. It is not unusual for a company to rebrand itself with a different feature that they want people to associate with their business. In this case, there is a town’s name associated with disease and death.
The news from Asbestos, Canada a year ago was that the town leaders wanted to change the name because of the negative connotations that the word asbestos holds. Asbestos, Canada is the home to the Jeffrey Mine and is a small town 80 miles east of Montreal. The approximate population is around 7,000 people.
For many years the Jeffrey Mine, which was named after W.H. Jeffrey, who bankrolled the town’s asbestos mine, was the leading producer of asbestos in the world. The mine made Canada one of the world’s leaders in asbestos exportation. It was last owned by the Johns Manville Corporation.
A vote was scheduled to be taken by the townspeople in October on what to change the name to. The four choices that were to be voted on were:
- Apalone – an indigenous species of turtles.
- Jeffrey – W.H. Jeffrey bankrolled the town’s Jeffrey Asbestos Mine.
- Phoenix – the mythological bird of rebirth.
- Trois-Lacs – a local lake and the name of a municipality that merged with Asbestos in 1999.
This week the leaders of Asbestos, Canada decided to “pause” the re-naming as there is a lot of dissension among the town people on the changing of the name.
Asbestos causes cancer. This was declared by the World Health Organization over 30 years ago. It is a fact no amount of rebranding can hide. Asbestos continues to kill people.
Approximately 100,000 people die globally each year from asbestos related diseases. Asbestos can cause lung cancer, malignant mesothelioma, and asbestosis. It is estimated that at least 80-85 percent of cases of malignant mesothelioma can be traced to exposure to asbestos. Changing the name of the town will not change the history of what asbestos has and continues to do to the health of the world.
Asbestos, Canada will always be associated with the Jeffrey Mine and asbestos manufacturing. The legacy of the damage that asbestos has done to peoples’ lives and contributed to their premature deaths cannot be rebranded.
We wish the people of Asbestos the best as they search for a new name and a healthy future that does not highlight their history in asbestos production.
What Are Clinical Trials and How Can They Advance Treatment?
COVID-19 has impacted our daily lives throughout the U.S. This previously unknown virus that has caused the pandemic we are currently in has scientists all over the world researching for a cure.
The virus is educating a lot of people about the clinical trial process. As scientists race to find a cure for this deadly virus, the process that is in place for approval for new medications, treatments, and vaccinations is being questioned. Why does it take so long? Why is participation so low?
Patients, family members, and experts who are dealing with malignant mesothelioma know that the process to improve therapy leading to a cure is slow. There are requirements as the process is rigorous with defined stages, criteria, and approvals.
One of the challenges of conducting a clinical trial is to get participation in the trial. All participation is voluntary and can be withdrawn at any time. It is estimated that less than 5 percent of all adult patients diagnosed with cancer participate in clinical trials. Some of the reasons people give for not participating are:
- Lack of awareness, patients didn’t know about it.
- They don’t think they qualify.
- Fear and safety involved.
- The inconvenience of location or added responsibilities.
- Confusion over whether it is covered by insurance.
It is reported that 25 percent of cancer trials failed to enroll a sufficient number of patients, and 18 percent of trials closed with less than half the targeted enrollment.
Research from 2019 gives another perspective. The article published in the Journal of the National Cancer Institute in March of 2019 written by Unger JM, Validya R, Hershman DL, et al did a systematic review and analysis of the structural, clinical, and physician and patient barriers to cancer clinical trial participation. Their findings in a study funded by the National Cancer Institute included that:
- 55.6 percent of patients did not participate in a trial because no trial was available for their type or stage of cancer at their treatment center.
- 21.5 percent of patients were ineligible due to criteria that did not include them such as co-morbidities.
- 22.9 percent of patients had physician and patient related barriers, such as not being asked to participate or refusing by the patient.
As we continue to live through this pandemic and people are becoming more aware of the clinical trial process, there are reports of up to 16,000 people – mostly young – that have offered to participate in the development of a vaccine. They are volunteering to be given the vaccine and then exposed to the coronavirus as part of a study to evaluate a vaccine that is still in the experimental phase.
COVID-19 has changed our lives. Hopefully a new awareness of the opportunity to participate in clinical trials for all diseases will be one of the positive results that comes from the pandemic.
Free Mesothelioma Patient & Treatment Guide
We’d like to offer you our in-depth guide, “A Patient’s Guide to Mesothelioma,” absolutely free of charge.
It contains a wealth of information and resources to help you better understand the condition, choose (and afford) appropriate treatment, and exercise your legal right to compensation.
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