Living with Mesothelioma in Canada: Information and Support for Patients and Caregivers

Information and Support After a Mesothelioma Diagnosis

A mesothelioma diagnosis can bring questions about medical care, everyday life, finances, caregiving and compensation. Knowing where to turn can make those questions easier to manage.

This guide brings together practical Canadian information for people living with mesothelioma and the family members, friends and caregivers supporting them.

It covers preparing for medical appointments, finding help with treatment-related expenses, connecting with support services, understanding the caregiving role and learning about potential compensation through U.S. asbestos trust funds.

Where to Start

There is no single correct way to respond to a mesothelioma diagnosis. Some questions require your healthcare team. Others may be better addressed by a social worker, support organization, government program or lawyer.

If you are not sure who to ask

The Canadian Cancer Society’s Cancer Information Helpline is a national service for people with cancer, caregivers, families and friends.

Information specialists can answer general questions about cancer and help you find services related to treatment, clinical trials, emotional support and resources in your community.

For medical concerns, including new or worsening symptoms, contact your healthcare team or follow the instructions they have given you about urgent care.

Preparing for Medical Appointments

Appointments can involve a large amount of information. Writing down your questions beforehand and recording the answers can make it easier to keep track of what you have been told.

If you are comfortable doing so, consider bringing a family member, friend or caregiver who can listen, take notes and help you remember questions.

Questions you may want to ask

• What type of mesothelioma do I have?
• What is the stage or extent of the disease?
• What treatment options are available to me?
• What is the goal of the recommended treatment?
• What side effects should I expect?
• Which symptoms should I report immediately?
• Who should I contact between appointments if I have concerns?
• Should I consider a second opinion?
• Are there clinical trials that may be relevant to me?
• What supportive or palliative care is available to help manage symptoms and quality of life?

Canadian Cancer Society: Questions to Ask When You Have Cancer

Canadian Cancer Society: Supportive Care for Mesothelioma

Help With Travel, Expenses and Everyday Needs

Cancer can create costs that are not limited to medical treatment. Transportation, parking, accommodation, prescriptions, equipment, help at home and time away from work can all affect patients and families.

Ask whether a social worker is available

Hospital and cancer-centre social workers may be able to help you identify financial assistance, transportation, home-care services and other programs that may be relevant to your circumstances.

If prescription costs are a concern, ask whether your centre has a drug access navigator or another professional who helps patients identify medication assistance programs.

Transportation to treatment

The Canadian Cancer Society offers transportation programs and a Travel Treatment Fund. Availability and eligibility vary, so check the program information for your circumstances.

Canadian Cancer Society: Transportation and Travel Assistance

Finding services near you

The Canadian Cancer Society’s Community Services Locator lets you search by city or postal code for support groups, financial help, places to stay and other services for people living with cancer and their families.

Search the Community Services Locator

Emotional and Peer Support

People respond to a cancer diagnosis in different ways. Some want to speak privately with a professional. Others find it helpful to talk with people who are living through a similar experience.

You do not have to share your experience publicly to seek support.

Mesothelioma-specific support

The Canadian Mesothelioma Foundation offers facilitated online support sessions for people living with mesothelioma and their caregivers. Sessions are held over Zoom and provide an opportunity to connect with peers and discuss subjects including navigating the healthcare system, emotional wellbeing and practical support.

Learn about Canadian Mesothelioma Foundation support groups

Information for Caregivers

Caregiving can include arranging appointments, providing transportation, managing medications, preparing meals, helping with personal care, handling paperwork and simply being present.

The responsibilities can change as treatment and health needs change.

Make the role manageable

• Ask the healthcare team what care will be needed at home.
• Ask whether home-care services are available.
• Be clear about tasks you are not comfortable performing without instruction or assistance.
• Share responsibilities with family members or friends where possible.
• Keep a central record of appointments, medications and important contact information.
• Ask for support for yourself when you need it.

Canadian Cancer Society: Caregiving

Taking time away from work

Employment Insurance caregiving benefits may be available to eligible people who need time away from work to care for or support someone who is critically ill, injured or requires end-of-life care.

Eligibility depends on the circumstances and requires medical certification. A mesothelioma diagnosis does not automatically establish eligibility for these benefits.

Government of Canada: EI Caregiving Benefits Eligibility

Understanding Compensation Options

Financial assistance for everyday expenses and legal compensation for an asbestos-related disease are not the same thing.

Depending on a person’s circumstances, different compensation systems may be relevant. These can include provincial workers’ compensation programs, U.S. asbestos bankruptcy trust funds or other potential legal claims.

The remainder of this guide explains the U.S. asbestos trust fund process offered through Sotos LLP, The Schenk Law Firm and Alexeev Attorneys.

U.S. Asbestos Trust Funds for Canadians

What is an asbestos trust fund?

Many companies that faced substantial asbestos liabilities entered U.S. bankruptcy proceedings. As part of the bankruptcy process, asbestos personal injury trusts were established to compensate eligible people harmed by asbestos-containing products, materials or equipment connected to those companies.

More than 60 U.S. asbestos trust funds remain active. Collectively, asbestos trusts were established with approximately US$30 billion in assets.

Canada does not have an equivalent network of asbestos bankruptcy trusts. However, Canadians may qualify to make claims against U.S. trusts even when the asbestos exposure itself occurred in Canada.

Who may qualify?

Canadians diagnosed with mesothelioma, asbestos-related lung cancer or certain other serious asbestos-related diseases may qualify for compensation from one or more trusts.

Eligibility is determined separately under the rules of each trust and may depend on:

• The diagnosis
• Medical and pathology evidence
• Employment and occupational history
• The location and timing of asbestos exposure
• Products, equipment, jobsites or activities involved
• A connection to a company covered by the trust
• The trust’s medical, exposure, latency and filing requirements
• Previous asbestos claims or settlements

What if you do not remember the asbestos product?

You do not need to know the exact product name, manufacturer or jobsite before asking for an assessment.

Mesothelioma can develop decades after asbestos exposure, so incomplete memories and missing records are common. An investigation can begin with information such as:

• Employers and job titles
• Approximate employment dates
• Jobsites and locations
• Work duties and nearby trades
• Industrial equipment used or worked around
• Military service
• Union or pension information
• Former co-workers
• Possible take-home or household exposure

Historical employment, union, pension, tax, military, jobsite, product and witness records may then help establish qualifying exposure.

Can a family pursue a claim after someone has died?

In many circumstances, an asbestos trust claim may be started or continued by a legally authorized estate or personal representative after the affected person has died.

The trust may require documents establishing the representative’s legal authority, in addition to medical and exposure evidence.

How the U.S. Asbestos Trust Claim Process Works

Do you have to go to court?

Most asbestos trust claims are handled through administrative procedures and do not require a lawsuit, trial or court appearance.

The service described here concerns eligible U.S. asbestos trust fund claims. Representation in a lawsuit, workers’ compensation matter or another legal proceeding is not included unless expressly agreed in a separate written retainer.

What does the legal service cost?

Who handles the claim?

Sotos Class Actions works with The Schenk Law Firm in the United States and Alexeev Attorneys in Quebec to provide coordinated Canadian and U.S. support for asbestos trust fund claims.

Sotos represents clients throughout Canada outside Quebec. Alexeev Attorneys handles matters involving Quebec law and provides services in French and English. The Schenk Law Firm brings more than 40 years of experience in U.S. asbestos litigation and asbestos trust fund claims.

Each firm remains responsible for work performed within its jurisdiction while coordinating the investigation and trust claim process.

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