Money, Work, Insurance and Travel

Start With Your Cancer Center

One of the most useful first steps is to ask your cancer center for a financial counselor, oncology social worker, or patient navigator.

These professionals may be able to help you:

• Understand your insurance benefits and expected treatment costs
• Apply for financial assistance programs
• Request prior authorization for treatments and scans
• Appeal insurance denials
• Find help with transportation or lodging
• Explore disability benefits and work leave
• Connect with other local or national resources

Many hospitals also have their own financial assistance or charity care programs.

You can ask for financial help even if you have health insurance. Copays, deductibles, travel expenses, and lost income can still create significant financial strain.

If you’re worried about paying for care, tell your healthcare team before postponing treatment or appointments because of the cost.

Getting Help With Medicines and Treatment Costs

Cancer medicines can be expensive, especially when treatment continues for months or years.

Some nonprofit organizations provide assistance with medication copays, insurance premiums, or other healthcare expenses.

Other organizations help patients find programs or resolve insurance problems.

Financial assistance programs have eligibility requirements.

Some are limited to certain diagnoses, medications, income levels, or types of health insurance.

Because SFT is rare, you may not find a fund specifically named for solitary fibrous tumor.

Ask the organization whether there is an appropriate fund for your diagnosis, prescribed medication, or another relevant category.

Funds can open and close as available money changes.

Being listed here does not mean a program currently has funding available for SFT.

Some pharmaceutical companies offer patient assistance programs or copay support for eligible patients.

These programs may help with medicines prescribed for SFT, depending on the treatment, insurance type, and other eligibility requirements.

Ask your oncology pharmacist, financial counselor, or prescribing doctor’s office whether a manufacturer program is available for your medicine.

Government-insured patients may have different eligibility rules than patients with commercial insurance.

Understanding Your Health Insurance

Insurance can be complicated, particularly when treatment involves rare cancer specialists, expensive medicines, or services at multiple hospitals.

You don’t need to become an insurance expert, but understanding a few common terms can help.

Before scheduling a specialist consultation, surgery, scan, or expensive treatment, ask

• Is this doctor or hospital in my insurance network?
• Does the treatment require prior authorization?
• What is my expected out-of-pocket cost?
• Will the hospital and all involved doctors be covered?
• Are there additional charges for imaging, pathology, anesthesia, or medications?

Your healthcare team’s billing or authorization staff can often help answer these questions.

Marketplace insurance

In the United States, Affordable Care Act Marketplace plans cannot reject you or charge higher premiums because you have cancer or another pre-existing medical condition.

You can learn more about Marketplace plans and eligibility through HealthCare.gov.

Phone: 1-800-318-2596

Medicare and Medicaid

If you have Medicare, review your coverage for specialist visits, outpatient care, prescriptions, and other services. Prescription medications may be covered differently depending on whether they’re provided in a medical facility or taken at home. Medicare also has programs that may help eligible people with prescription costs.

Learn more at Medicare.gov. Phone: 1-800-MEDICARE (1-800-633-4227)

Medicaid benefits and eligibility vary by state. Many state Medicaid programs also provide transportation assistance for eligible medical appointments. Ask your state Medicaid program about available benefits.

What if Insurance Denies Care?

A denial can be frustrating, especially when your doctor has recommended a treatment, scan, or consultation.

A denial does not always mean the final decision has been made.

Depending on your insurance plan and the reason for the denial, you may have the right to appeal.

1. Find out why the request was denied. Ask the insurer for the specific reason and the written denial notice.
2. Talk with your healthcare team. Your doctor’s office may be able to provide additional medical records, a letter explaining why care is needed, or a request for reconsideration.
3. Ask about an internal appeal. This allows the insurance company to review its decision again.
4. Ask about external review if needed. For eligible denials, an independent organization may review the insurer’s decision.
5. Seek help with the process. A patient advocate, financial navigator, or legal and financial navigation organization may help you understand your options.

If a delay could seriously affect your health, ask whether an expedited review is available.

For more information, see HealthCare.gov: Appealing an Insurance Decision.

Because SFT is rare, you may need care from a specialist who is not included in your insurance network.

Ask your insurer whether a network exception, single-case agreement, or other authorization is available.

Your referring physician or sarcoma center may be able to provide documentation explaining why specialized care is medically necessary.

See Part 6: Finding a Sarcoma Center.

Work, Employment, and Medical Leave

SFT and its treatments may affect your ability to work.

Some people continue working throughout treatment. Others need time away for surgery, recovery, medical appointments, or ongoing symptoms.

Depending on your situation, you may be eligible for workplace accommodations, protected leave, or disability benefits.

Workplace accommodations

The Americans with Disabilities Act (ADA) may protect eligible employees with cancer and require covered employers to provide reasonable accommodations unless doing so would create an undue hardship.

Examples may include flexible work schedules, time off for medical appointments, additional rest breaks, changes to certain job duties, and remote work when appropriate for the job.

The Job Accommodation Network (JAN) provides free guidance about workplace accommodations. Phone: 800-526-7234

Family and Medical Leave Act

The federal Family and Medical Leave Act (FMLA) provides eligible employees with up to 12 workweeks of unpaid, job-protected leave during a 12-month period for qualifying medical or family reasons.

Leave may sometimes be taken intermittently, such as for treatment appointments. Eligibility rules depend on your employer, employment history, hours worked, and worksite.

Learn more through the U.S. Department of Labor. Phone: 866-487-9243

Paid family or medical leave

Some states have paid leave programs for eligible workers.

Depending on the state, benefits may be available when you need time away from work for your own serious health condition or to care for an eligible family member.

Ask your employer or state labor department about available programs.

If you feel comfortable discussing your needs, ask your human resources department about medical leave, workplace accommodations, short-term or long-term disability insurance, and continuation of health coverage.

You can also ask your medical team for help completing necessary forms.

Disability Benefits

If SFT or its treatment prevents you from working, you may qualify for disability benefits.

Eligibility depends on your medical condition, employment history, financial circumstances, and the program involved.

The Social Security Administration administers two important programs:

Some serious medical conditions may qualify for faster review through the Social Security Administration’s Compassionate Allowances program.

An SFT diagnosis alone does not automatically qualify someone for disability benefits or expedited approval.

Your medical records and information about how your condition affects your ability to work are important parts of the application.

Learn more at Social Security. Phone: 1-800-772-1213

If you’re unsure whether to apply, ask a social worker or benefits counselor for guidance.

Getting Help With Travel and Lodging

Specialized sarcoma care may require traveling to another city or state.

Even when medical treatment is covered by insurance, expenses such as transportation, lodging, meals, and time away from work can become substantial.

Some organizations offer travel and lodging assistance.

Availability depends on location, eligibility, schedules, and available transportation or lodging. Contact the organization before making travel arrangements.

Many major cancer centers have relationships with nearby hotels, patient lodging programs, transportation services, or charitable organizations.

Ask about

• Discounted lodging
• Gas cards or transportation assistance
• Parking assistance
• Help coordinating appointments
• Telehealth options
• Having scans and laboratory tests performed closer to home

Sometimes your local oncologist and sarcoma specialist can share responsibility for your care.

You may be able to have scans, laboratory tests, or some treatments locally while consulting with the specialized team for major decisions.

Ask whether appointments can be coordinated to reduce the number of trips.

Paying for Clinical Trials

Clinical trials may offer access to new treatments, but participation can create additional costs.

Before enrolling, ask the trial coordinator which expenses will be covered by the study and which may be billed to your insurance.

Some expenses are considered routine medical care, while others are specifically related to research.

You should also ask about travel, lodging, meals, and time away from work.

Some clinical trials offer financial assistance for travel or other participation expenses.

For more information, see Part 9: Joining Research.

Free Help With Insurance and Financial Questions

You do not have to navigate complicated insurance or benefits questions on your own.

Patient Advocate Foundation

Provides free case management services to eligible patients facing healthcare access and insurance challenges. Phone: 800-532-5274

Triage Cancer

Offers legal and financial navigation information for people affected by cancer. Topics include insurance, employment, disability benefits, finances, and related legal rights. Its navigation program provides information and guidance. It does not directly provide financial assistance or legal representation.

CancerCare

Offers free oncology social work services, counseling, and information about cancer-related financial assistance. Phone: 800-813-4673

Your own cancer center’s financial counseling or social work department is another important starting point.

Keeping Track of Costs and Important Documents

When you’re managing multiple appointments, insurance claims, and medical bills, organization can help reduce confusion.

Consider keeping a folder or electronic record with:

• Insurance cards and policy information
• Medical bills and explanations of benefits
• Prior authorization approvals or denials
• Financial assistance applications
• Employment leave or disability paperwork
• Travel receipts and appointment records
• Names, dates, and notes from calls with insurance representatives

If you receive a bill you don’t understand, contact the provider’s billing office and your insurer to review it.

Before paying a large unexpected charge, ask for an itemized bill, confirm that insurance has processed the claim correctly, and inquire about financial assistance or a payment plan.

Your Next Steps

Use this checklist to identify where you may need assistance.

• Ask for a financial counselor or social worker. Find out what help your cancer center offers.
• Review your insurance coverage. Check network participation, authorizations, and expected costs.
• Explore medicine assistance. Ask about charitable funds and manufacturer support programs.
• Understand your workplace options. Review accommodations, leave, and disability benefits if needed.
• Plan for travel expenses. Ask about transportation, lodging, and local treatment options.
• Keep important documents organized. Track bills, insurance decisions, and assistance applications.
• Ask for help with problems early. Don’t wait until expenses or denied claims become difficult to manage.