Mesothelioma, like many other cancers, is a disease that can financially cripple the patient, their caregivers and family.
Those diagnosed with mesothelioma may have to cut back on their hours at work or quit their jobs because of treatments. Caregivers also may miss work to accompany their loved ones to therapy or doctor appointments. Veterans also feel the pinch when long-term disability benefits through the VA, Social Security Disability or from their private insurer are delayed.
Treatments, such as chemotherapy and surgery, are costly and usually more than one is performed, which compounds the expense of those therapies.
The Association of Oncology Social Workers in 2009 conducted a survey of cancer patients, their caregivers and oncology social workers to investigate the extent that financial stressors affect cancer patients and their families.
The results indicated many cancer patients struggle to pay their medical bills, in addition to their household expenses.
- 30 percent of cancer patients delayed getting their prescriptions filled because they lacked the funds.
- 22 percent reported skipping doses of medication to make their prescriptions last longer.
- 40 percent of cancer patients and caregivers admitted they depleted their savings since the cancer diagnosis.
- 66 percent of those experiencing financial strain reported symptoms of depression and anxiety.
Expenses Continue to Increase
While many mesothelioma patients and their families are forced to survive on reduced income, their expenses usually increase as a result of medical costs not covered by insurance, as well as some additional personal expenses.
Many patients are responsible for their copay at each doctor visit, chemo appointment, diagnostic test or surgical procedure.
Other patients must meet a yearly deductible and then must pay a percentage of their medical costs. Traveling to meet with a mesothelioma specialist can add expenses, such as airfare, hotel accommodation and restaurants while away from home. Some patients and caregivers have to hire help to clean the house or to take care of the yard if the patient and caregiver are unable to manage those duties.
Financial assistance for mesothelioma patients is available from a variety of different sources:
- Copays for doctor visits, medications, diagnostic tests
- Transportation to and from treatment
- Babysitting (if the mesothelioma patient has young children)
- Medications (if the patient does not have prescription coverage)
- Household expenses
- Medical supplies (wigs, prosthetics, shower chairs, etc.)
Financial Help from the Government
There are many government and community organizations that offer financial assistance, support and resources to mesothelioma patients.
Social Security Disability is available to mesothelioma patients who have earned enough work credits throughout their lifetime and who meet their criteria of disability.
The Supplemental Security Income (SSI) program pays benefits to disabled adults and children who have limited income and resources.
Veterans may be eligible for additional financial benefits through the U.S. Veterans Administration and should contact the social worker at their VA clinic or hospital for more information.
States vary greatly in the types and amounts of financial assistance they offer their residents. Most state programs offer only temporary assistance, Food Assistance programs, temporary cash assistance and Medicaid health benefits to those who don’t have health coverage or lose it.
State programs usually are based on income or assets. The best way to find programs available in your state is to search your state government website for financial assistance.
County and Municipal Level
There are plenty of options at the local level, too. These programs can include rental or mortgage assistance and help with paying utility or phone bills. Eligibility also is based on income and assets.
Those in need of financial assistance should apply for whatever programs are available to them at the federal, state and local levels.
Other Groups Offering Financial Help
Private and nonprofit cancer support organizations also offer some financial assistance and other valuable resources to cancer patients.
The best place to start looking for these resources is the Cancer Financial Assistance Coalition (CFAC). You can search by geographical location, type of cancer diagnosis and type of assistance required, such as transportation, copays and medical equipment, among others.
Because mesothelioma is a rare diagnosis, don’t limit your search to just mesothelioma resources. Choosing all cancer diagnoses will open up more resource options in your search for assistance.
Some of these organizations offer specific types of support to eligible cancer patients:
- CancerCare: Assists with transportation, medical equipment and child care costs.
- American Cancer Society: Helps with transportation.
- Angel Flight: Pilots volunteer their time and plane to transport patients to treatment centers.
- Joe’s House: Provides housing resources at major cancer treatment centers throughout U.S.
- Copay Relief: Offers assistance with copays for doctor visits and medications.
Your oncology clinic or hospital also may have an oncology social worker who is knowledgeable about the various hospital and community resources available to you.
These potentially valuable resources may not be publicized on the CFAC website. Additionally, some hospitals have their own programs to help their patients with transportation, lodging or other types of financial resources only available to their patients.
Don’t Give Up Searching for Help
When searching for financial assistance, be exhaustive and repetitive in your search.
Some programs receive grants or other sources of funding each calendar or fiscal year, so if a particular cancer support organization doesn’t have the funds today to help you, they may receive new funding in the future.
If a loved one or a friend offers to help, enlist them in searching for financial assistance, especially if you are struggling to find the strength or time to search.
Mesothelioma patients and their caregivers may find the financial burden of dealing with their cancer an added strain when dealing with the disease and its treatment effects. However, there are some financial resources out there that can help ease that burden.
It may take some hard work and determination to find financial help, but these are tasks that easily delegated to our loved ones if it seems too overwhelming.
Questions and Answers from the October Online Support Group
Q: If you are already on Social Security, can you apply for Social Security Disability?
A: No, but you can apply for Supplemental Security Income.
Q: Where can I learn more about how clinical trials work?
A: We made a web page to help you learn more about mesothelioma clinical trials and how they work. You can also view a slideshow about clinical trials in our recap of the January 2014 online support group, which runs through the different phases and how eligibility and participation works.
Q: What is it like to undergo surgery for mesothelioma?
A: This will depend upon the surgery that is performed, the type and stage of mesothelioma a person has, and the overall health of the patient. You can learn more about the different types of surgeries here, and you can reach out to other people with mesothelioma who may have undergone surgery through The Mesothelioma Center’s Facebook page.