What to Do After a Mesothelioma Diagnosis

Empowering Mesothelioma Patients: Understanding the Patient Bill of Rights

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Navigating mesothelioma can be completely overwhelming, and it’s easy for patients and their loved ones to feel lost in unfamiliar territory. One important way to gain clarity and a sense of empowerment is to understand your rights as a mesothelioma patient.

Mesothelioma patients are protected by something called the Patient Bill of Rights, a set of guidelines agreed upon by the medical community to ensure that all patients—including mesothelioma patients—get the respectful, comprehensive, informed, and consensual care that they deserve.

In this article, we’ll explore the Patient Bill of Rights as they pertain to mesothelioma patients. These guidelines exist to protect and empower patients throughout their mesothelioma journey, ensuring that they have access the information and consideration they need in order to feel confident in their care. It’s important for mesothelioma patients to know their rights so that they can advocate for themselves.

What is the Patient Bill of Rights?

The Patient Bill of Rights are a set of guidelines clearly stating and protecting the ethical treatment to which every patient is entitled. They were first adopted by the American Hospital Association (AHA) in 1973, and revised in 1992. These guidelines are based on the foundational belief that patients have inherent rights, and that medical professionals are expected to uphold and respect those rights. They give both patients and doctors a sense of the standard of care due to patients, highlighting a patient’s right to participate in medical decisions made during their treatment or care.

Individual hospitals, cancer care centers, or practitioners may have their own variations on the Patient Bill of Rights, and may add additional rights beyond these basic standards.

The Mesothelioma Patient Bill of Rights: A Basic Rundown

According to the AHA, mesothelioma patients are entitled to the following from their healthcare providers:

  1. Considerate, respectful care. Mesothelioma patients have the right to be treated with respect, consideration, and personal dignity at all times, including respect for their cultural, spiritual, and personal values, and their related beliefs and preferences. This also includes the right to receive treatment in a safe, clean environment free of abuse or neglect, without any excessive physical restraint, isolation, or over-medication.
  2. Information about your condition and treatment. Mesothelioma patients have the right to receive relevant, understandable information about their mesothelioma diagnosis, treatment, and prognosis. Your healthcare provider should encourage you to seek information, and should not shut you down or discourage you from seeking clarifications or second opinions.
  3. Answers to questions about specific treatments. Mesothelioma patients have the right to discuss and ask questions about specific procedures or treatments, including but not limited to potential risks, recovery, and any medically reasonable or available alternatives (along with comparative risks and benefits).
  4. Knowledge about who is caring for you. Mesothelioma patients have the right to know who is involved in their care, including physicians, nurses, and any other healthcare professionals. This includes knowing if anyone involved in their care are students, residents, or other trainees.
  5. Knowledge about the financial impact of your care. Mesothelioma patients have the right to know the potential immediate and long-term financial significance of treatment choices.
  6. The ability to make decisions about your care, and to change your mind. Mesothelioma patients have the right to make decisions about their plan of care, both before and during the course of treatment.
  7. The ability to refuse a recommended treatment or plan of care: In almost all cases, mesothelioma patients have the right to refuse a proposed treatment or care plan. This includes the right to information about the medical consequences of refusal, and the right to continued care and services (or transfer to another hospital or provider)
  8. The right to full information about advance directives, and the right to have those advance directives followed. Mesothelioma patients have the right to be told about advance directives, legal documents stating their medical wishes in case they become unable to do so themselves. Once presented, advance directives should be followed. If there are any issues that might prevent an advance directive from being followed, the patient must be informed.
  9. The right to privacy. Mesothelioma patients have the right to privacy about their care, and to expect that any related information, communications, or records are considered confidential and protected.
  10.  The right to view their own patient files and to have those files explained to them. Mesothelioma patients have the right to access their own medical records, and to have that information explained or interpreted as necessary.
  11.  The right to reasonable, timely responses to requests for appropriate and medically indicated care and services. If a mesothelioma requests a medically appropriate service or form of care, they have a right to have those requests responded to as soon as possible, within their provider’s capacity and in accordance with the urgency of a case.
  12. The right to transfer to another healthcare provider. Whenever medically possible, mesothelioma patients have the right to transfer to another healthcare facility or provider, once accepted for transfer by the new facility or provider. They also have the right to be informed about any potential risks or benefits that may come from such a transfer.
  13. The right to transparency about business relationships between a healthcare provider and any third party that may influence the patient’s care. If a healthcare provider or facility has business relationships with a third party that may impact a mesothelioma patient’s care in any way, the patient has the right to information about those relationships truthfully and transparently.
  14. The right to full information about research studies, including the right to decline participation: In some cases, healthcare providers may seek to include mesothelioma patients in research studies, data gathering, or clinical trials. Mesothelioma patients have the right to be fully informed about any participation, including the right to refuse. If they do decline, mesothelioma patients have the right to the same level of continued treatment and care.
  15. The right to reasonable continuity of care: Mesothelioma patients have the right to “continuity of care”, which means care by the same providers or facilities whenever possible or appropriate. If a provider or facility is no longer available or appropriate, mesothelioma patients must be informed of realistic, accessible alternative care options available to them.
  16. The right to information about healthcare providers’ policies related to care, treatment, and patients’ rights, including their grievance process: Mesothelioma patients have the right to receive full information about each provider and facility’s policies regarding the patient bill of rights, as well as any additional rights and responsibilities relating to their care and treatment. They also have the right to full information about a provider/facility’s grievance process and conflict resolution protocols (for example, ethics committees), as well as access to any patient representatives, social workers, or advocates available to them throughout these processes.

Are you or a loved one looking for more information about mesothelioma? Call (855) 385-9532 to learn more.

Demolition Contractor Accused of Knowingly Exposing Workers to Asbestos

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The history of asbestos is filled with companies knowingly poisoning people with asbestos so they could make money. Although the dangers of asbestos have been documented for more than a century, and its use largely stopped more than 40 years ago, some companies continue to happily pocket money if that means causing fatal illnesses.

The latest example is accusations against KLF Enterprises, a Chicago-based demolition business, and three other companies that worked on the remains of a closed Waukegan, Illinois, hospital.

Asbestos On-Site, But No Warnings or Protective Equipment

An investigation by the U.S. Department of Labor’s Occupational Safety and Health Administration (OSHA) found 36 violations in the demolition of the former hospital, resulting in “serious dangers” of asbestos, reports the Lake & McHenry County Scanner. The agency seeks $392,002 in penalties.

In November, OSHA employees saw KLF workers not wearing protective equipment while they worked around piles of debris and steel beams during the demolition of the eight-story structure. OSHA found they were disturbing and removing asbestos-containing fireproofing on the beams. The work should’ve been safely done in a contained manner while the building was still intact.

KLF, a subcontractor at the site, didn’t stop work or require employees to take precautions and use accepted control measures to protect themselves and others after the material was found.

OSHA Claims KLF Knew Asbestos Was in the Building But Didn’t Tell Others or Protect Workers

OSHA states that KLF had a 2019 building survey stating extensive use of asbestos fireproofing on structural beams, but it didn’t inform employees of the health hazards of uncontrolled exposure. KLF also didn’t tell the site’s general contractor or owner about the asbestos. The insulation and fireproofing contained up to 15% chrysotile asbestos.

OSHA cited KLF for its failure to comply with its asbestos regulations, including failing to do the following:

  • Notifying employees and other contractors of the presence of asbestos-containing material
  • Require employees to wear protective equipment
  • Train employees to recognize and avoid unsafe conditions
  • Provide medical surveillance of employees for asbestos, silica, and lead exposures
  • Safely handle asbestos, silica, and lead materials and waste

Non-asbestos safety violations are also alleged.

Others Accused of Federal Safety Violations

OSHA claims other companies engaged in dangerous practices involving asbestos-containing material, including:

  • Reed Illinois Construction, the general contractor, for not ensuring KLF met federal safety and health standards for asbestos and for failing to actively inspect the site for safety hazards
  • V Covington LLC for its failure to ensure KLF and another subcontractor, Alliance Environmental Control Inc., complied with federal asbestos rules
  • Alliance Environmental Control Inc. for creating asbestos hazards by not removing asbestos, including the fireproofing insulation

Proposed fines for these companies range from $32,262 to $6,452.

Call Us Today For A Free Consultation

If you have mesothelioma or another asbestos-related illness, you may be entitled to compensation. To discuss your situation and how Satterley & Kelley, PLLC can help, call our Louisville office toll-free at 855-385-9532. You may also complete our contact form for a free initial consultation.

Talc-Based Baby Powder

New Study Finds Connection Between Baby Powder Use and Ovarian Cancer

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Research published in May supports the claims of women suing Johnson & Johnson (J&J), who allege their use of the company’s asbestos-contaminated baby powder leads to the development of cancer. Though the company denies it’s responsible, they have offered billions of dollars to settle these lawsuits.

The analysis was done by National Institutes of Health researchers and published in the Journal of Clinical Oncology. They found the use by women of talc powder on their genitals was associated with the development of ovarian cancer. Researchers state the association was stronger when powder use was more frequent and for longer periods, reports NBC News.

Study Finds Ovarian Cancer More Likely If Talcum Powder Used

Researchers used survey data from the Sister Study, which involved more than 50,000 women from 2003 to 2009. Participants joined when they were from 35 to 74 years old. Each had a sister diagnosed with breast cancer, which could increase their risk for breast or ovarian cancer.

They were asked how often they used talc powder on their genitals when they were 10 to 13 years old and in the year before joining the study. A follow-up survey asked about their lifetime talcum powder use. Researchers estimate that up to 56% of the participants used talc powder on their genitals at some point in their lives.

The analysis doesn’t prove talcum powder causes ovarian cancer, and it doesn’t identify a brand or chemical creating the association. It states that the longer and more frequent the use of baby powder, the likelihood of ovarian cancer increases.

Scientific Tug of War in the Courtroom

The burden is on the plaintiffs to prove that it’s more likely than not that the baby powder caused ovarian cancer. Both sides point to studies claiming there is, and isn’t, a link between the two. Without making the case that there is a link, plaintiffs’ cases will be dismissed. The defense may use research published in 2020 that found no statistically significant association.

Plaintiffs may point out the study wasn’t designed to detect small changes in risk since it didn’t include questions to women about their lifetime powder use or consider those involved in surveys might not correctly remember their past habits. The most recent study covers those issues.

Hanging over J&J is evidence from a 2018 Reuters investigation stating the company was aware some of its baby powder was contaminated with asbestos as early as the 1970s. J&J denies asbestos, which is known to cause several cancers, was ever in its products.

More Than 50,000 Lawsuits Filed Against J&J

Legal claims started in 1999 when a plaintiff alleged her lifetime use of talc contaminated with asbestos caused her mesothelioma. A similar lawsuit started ten years later.

Since then, about 50,000 claims covering ovarian cancer and mesothelioma have been filed against J&J. Most of the lawsuits are pending  in a single federal court  in New Jersey. A trial is scheduled for December.

J&J claims its talc products are safe and denies they ever contained asbestos (its baby powder now contains corn starch instead of talc). The company’s defenses include that studies don’t show a credible link between using its product and ovarian cancer.

Last year, J&J offered $8.9 billion to settle these cases, and that dropped to nearly $6.5 billion this year, but there are strings attached. At least 75% of the plaintiffs have to agree, and cases would need to come under a bankruptcy court’s jurisdiction.  

J&J has failed twice to resolve these lawsuits in a New Jersey federal bankruptcy court. In 2021, the company set up a subsidiary that would assume liability for talc-related lawsuits and fund them. But bankruptcy protection is for businesses in financial distress, and courts have ruled that’s not the case. The subsidiary is a corporate “fall guy” created to shield a profitable company from liability.

Call Us Today For A Free Consultation

If you’re diagnosed with an asbestos-related condition, you may be entitled to compensation. Satterley & Kelley, PLLC attorneys are your boots on the ground if you or a family member in Kentucky has mesothelioma or another asbestos-related disease. Call our Louisville office at 855-385-9532 or use our contact form to schedule a free initial consultation.

Gene Mutation + Asbestos = Mesothelioma

Gene Mutation + Asbestos = Mesothelioma

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Recent research shows that even with minimal asbestos exposure, peritoneal mesothelioma may develop if the person has a specific gene mutation associated with cancer development.

Researchers at Fox Chase Cancer Center in Philadelphia, Pennsylvania, have shown that mice with a BAP1 gene mutation with minimal exposure to chrysotile asbestos are much more susceptible to malignant mesothelioma. Results were presented at the American Association for Cancer Research Annual Meeting in April.

What is a Gene?

Genes are the biological blueprints for the chemical processes that keeps cells, and people, alive. They contain information that leads to the creation of every part of our bodies. If a gene becomes mutated, cells become abnormal, and they may harm instead of help us. Gene mutations, for example, can lead to cancer development.

What’s a BAP1 Gene?

Some of us inherit a genetic mutation, which increases our chances of developing cancer. These changes mostly boost the risk slightly, according to GenoMEL, but there are inherited genetic mutations that increase those chances considerably.

These are called “high risk” genes. They include the BRACA 1 and 2 genes, which increase the risk of breast and ovarian cancers. BAP1is another, and it’s been found to boost the chances of cancers of the skin, eyes, kidneys, and mesothelium (where mesothelioma develops in the tissue in the chest, abdomen, and the outer surface of internal organs).

What Does the Research Show?

Chrysotile is a type of asbestos, and it’s been debated whether it can cause mesothelioma or lung cancer. Chrysotile is about 95% of the asbestos used commercially. Researchers wanted to know if low levels of chrysotile and crocidolite (another, more toxic asbestos type) could cause mesothelioma in normal mice or those with an inherited BAP1 gene mutation.

Over four years, researchers examined whether mice with the BAP1 mutation developed mesothelioma more often than normal mice. They learned that no matter the level of asbestos exposure, mice with a BAP1 mutation develop mesothelioma more frequently than normal mice. The findings indicate that those with the BAP1 mutation are highly susceptible to the cancer-causing effects of asbestos, even when minimal amounts of asbestos are involved.

Researchers also found that inflammation started by asbestos, especially chrysotile, in BAP-1 mutant mice, on a cellular level results in an environment where a normal immune response to destroy a tumor is suppressed, making it easier for tumors to develop. This information may help develop ways to boost the immune system’s response to help kill mesothelioma cells.

Contact Satterley & Kelley, PLLC Today for A Free Attorney Consultation

If you or a loved one has mesothelioma or another asbestos-related illness, our team can fight for your right to compensation and give you the attentive service you deserve. Call us toll-free at 855-385-9532 or complete our contact form to schedule your free consultation.

Practical Tips for Living With Mesothelioma

Mesothelioma Days of Awareness and Remembrance: How to Get Involved

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Mesothelioma patients and their loved ones can find themselves feeling alone, like no one else can understand or truly recognize their struggle. However, this is not the case: in fact, there is a strong, international community of mesothelioma patients, survivors, loved ones, researchers, and advocates who dedicate themselves to outreach about mesothelioma, solidarity-building among those affected, and remembrance of those who have passed. These groups also support mesothelioma research and an asbestos ban, working toward the larger aim of a mesothelioma-free world.

One way to connect with those communities and their efforts is by learning about and participating in mesothelioma days of remembrance, as well as related advocacy and awareness events. Throughout the year, different anti-asbestos and mesothelioma advocacy groups have events spanning days, weeks, and even months, supporting patients and their families and spreading awareness about this deadly—and preventable—disease.

In this article, we’ll explore several different mesothelioma advocacy and remembrance events, honoring the strength and resilience of mesothelioma patients and their loved ones while aiming to eradicate mesothelioma once and for all.

What are some of the main mesothelioma advocacy and remembrance events?

Mesothelioma Awareness Day (MAD)

When is it? September 26th

What is it? Mesothelioma Awareness Day was originally established in 2004, and was recognized by Congress in 2010. Today, it is a major mobilizer for mesothelioma awareness, raising the profile on mesothelioma while raising funds for research. It is also a day for the mesothelioma community to come together and celebrate mesothelioma patients and survivors, and to honor mesothelioma patients who have passed away.

National Asbestos Awareness Week (NAAW)

When is it? The first week in April (April 1-7).

What is it? Also known as Global Asbestos Awareness Week, this event has been held internationally since 2005. The U.S. version, called National Asbestos Awareness Week (NAAW), was recognized by Congress in 2024.

NAAW consists of events throughout the first week in April to raise awareness about the risks of asbestos exposure and to advocate for a total asbestos ban. It also includes a multiday advocacy and education seminar called the International Asbestos Awareness Conference, which centers on advocacy and support for those with asbestos-related diseases (including mesothelioma), as well as anti-asbestos lobbying. The conference includes webinars, so you can participate in remotely if you are unable to attend in person.

Mesothelioma Warrior Candle Lighting

When is it? December 28th (for those who have passed); January 4th (for those currently fighting mesothelioma)

What is it? This two-partevent is a worldwide candle-lighting ceremony for mesothelioma warriors and their loved ones. It allows the mesothelioma community to honor, remember, and pay respect to those who fought or are still fighting mesothelioma.

The first night of candle-lighting, on December 28th, caps off the year with a communal space to honor and remember those who have lost their lives to mesothelioma. The second night, on January 4th, offers a fresh start to the coming year for those who are currently fighting mesothelioma, to show solidarity and support for their continued strength and courage.

The Mesothelioma Warrior Candle Lighting tradition was originally started in 2000 by Jill Vaughn, who herself was a mesothelioma warrior. For over 20 years, this tradition has brought hope and solidarity to the mesothelioma community, honored the memory of those we have lost, and provided support to those who continue fighting.

To participate, light a candle for yourself or for the person in your life affected by mesothelioma. You can also request to be included on the annual list of mesothelioma warriors.

International Symposium on Malignant Mesothelioma:

When is it? October 17th-18th

What is it? Since 2004, this multiday conference on malignant mesothelioma, it has provided a space for patients, families, caregivers, specialists, researchers, and experts to discuss the latest cutting-edge treatment options and new innovations in care for those with malignant mesothelioma.

This symposium is a unique opportunity for patients and their loved ones to ask questions directly to the world’s foremost mesothelioma experts, and to learn about innovations in treatment and care that could drastically improve prognosis and quality of life. It is also a great opportunity to connect with providers and specialists and to seek out clinical trials. Finally, the symposium provides an essential opportunity for mesothelioma patients and their loved ones to gather with other people who have gone through what they are going through, which can make all the difference in battling the loneliness and alienation many mesothelioma patients and their loved ones experience.

The next symposium is scheduled for October 17-18, 2024 in Chicago, IL, but the location and exact date changes each year. The symposium also has remote participation options if you are unable to attend in person.

How Can I Participate in Mesothelioma Awareness and Advocacy?

There are many ways to participate in mesothelioma awareness and advocacy, as mentioned above. These include:

  • Attending events: Both Mesothelioma Awareness Day and Asbestos Awareness Week have many associated events each year, including fundraisers like Miles4Meso, Kayaking for Meso, and the John Slagle Memorial Golf Tournament. Look online to find mesothelioma awareness events closest to you. You can also attend conferences (whether remotely or in person), and participate in Mesothelioma Warrior candle lighting.
  • Organizing and leading your own event: If there are no events nearby, you can organize and lead your own event. Network with others in the mesothelioma community and speak to your local town or city authorities about putting up your own Mesothelioma Awareness Day event.
  • Wearing blue: The official color of Mesothelioma Awareness is blue. Participate by wearing a blue wristband, a blue ribbon, or blue clothing, or by raising a blue flag if you have a flagpole. Take the opportunity to start conversations with people you encounter to bring more awareness to mesothelioma and asbestos exposure.
  • Engaging on social media: If you’re not able to participate in person, you can always engage online and through social media to promote national and global mesothelioma awareness. Put a blue square or related filter on your profile pictures, or use hashtags like #MesotheliomaAwarenessDay to tell people about the dangers of asbestos and the harsh realities of living with mesothelioma. This sort of advocacy can be something you do year-round, not just on specific days.
  • Contacting your representatives. Use your voice and urge your political representatives to support a total asbestos ban, increased resources for mesothelioma patients and their families, or any other mesothelioma-related advocacy. You can call, write, or email, and can even host a letter writing campaign in your community.
  • Donating money or fundraising. While it’s not necessary to spend money in order to advocate for mesothelioma, one way to help is by donating to a mesothelioma research organization, advocacy group, or support fund for patients and their families. You can also rally members of your community to donate to the cause.
  • Telling your story and educating others in your community. Whether or not you have been personally affected by mesothelioma, you can share important facts about asbestos exposure and mesothelioma in your community. If you or a loved one has been personally affected by mesothelioma, tell your story. Your voice is important and adds dimension to the human toll of mesothelioma, making the need for a mesothelioma-free world all the more urgent and real.

Are you looking for more information about mesothelioma and how to advocate for your rights? Call (855) 385-9532 to learn more.