Treatment for desmoid tumor can be expensive, even with health insurance. Members of MyDesmoidTumorTeam often share their experiences and challenges with each other.

One member wrote, “My desmoid tumor is in the pec [pectoralis] muscle near my shoulder. Cryotherapy is the best option, but it’s not covered by Medicare or private health insurance, and it’s expensive.”

Another shared, “My daughter is on a chemo pill for a desmoid tumor in her abdomen. After insurance, her part is $2,000 a month.”

If this sounds familiar, you’re not alone. Fortunately, there are resources you can explore. From insurance coverage and financial assistance programs to guidance from your healthcare team, these nine strategies may help make desmoid tumor medications more affordable.

1. Private Health Insurance

The health insurance provider and plan you choose can impact the cost of your desmoid tumor treatment. Make a list of your medications, preferred physicians, and treatment centers, and then try to choose a plan that meets your healthcare needs. Coverage varies widely between plans and providers, so review each policy carefully to ensure you understand what is and isn’t covered. Your choices may be limited depending on your employer or your state health insurance exchange.

Also, once you choose a plan, make sure you use all your benefits. If you have questions about coverage for desmoid tumor medications, call your insurance provider directly. They can explain your plan in detail and help you avoid unexpected costs. When it’s time to enroll in a new plan, review your options to ensure the plan you have is still the best one for what you need.

Health insurance can be complicated, and it’s OK to ask for help. Human resources representatives, volunteer patient advocates, insurance agents, and others familiar with the ins and outs of insurance coverage can guide you through the process and help you make the most of your coverage.

2. Public Health Insurance

Public health insurance may be available through government programs. In the United States, these programs include Medicaid, Medicare, and Social Security benefits, such as Supplemental Security Income (SSI) and Social Security Disability Insurance (SSDI).

While a desmoid tumor diagnosis doesn’t automatically qualify you for disability benefits, you may still be eligible, so consider applying. If symptoms, treatment side effects, or long-term complications limit your ability to work for 12 months or longer, you might qualify for assistance.

3. Financial Assistance Programs

Some nonprofit organizations and charitable groups offer financial assistance, educational resources, travel resources, and other support for people living with desmoid tumor.

The Desmoid Tumor Research Foundation maintains a list of organizations that may be able to help. Examples include Accessia Health, the HealthWell Foundation, and the National Organization for Rare Disorders (NORD). The list also includes programs that provide financial assistance for specific medications.

Because each program has its own eligibility requirements, review the guidelines carefully, keep track of deadlines, and submit any required paperwork on time.

4. HSA or FSA

Health savings accounts (HSAs) and flexible spending accounts (FSAs) are tax-advantaged accounts that can be used to pay for eligible medical expenses, including prescription medications and doctor visits.

HSAs are typically available to people with a high-deductible health plan and allow unused funds to roll over from year to year. FSAs are usually offered through an employer, and most require you to use the money within a certain time frame.

Using tax-advantaged accounts may help reduce your out-of-pocket costs for desmoid tumor medications. If you’re unsure whether an HSA or FSA is an option for you, your employer, benefits administrator, or a financial professional can help answer your questions.

5. Discount Drug Cards

Discount drug cards can help lower the cost of certain prescription medications. These programs work by negotiating prices with pharmacies. Because of their size, these programs often have more leverage to secure lower prices. Popular discount card brands include America’s Pharmacy, GoodRx, NeedyMeds, SingleCare, and WellRx.

Use caution when signing up for discount cards, as they are not closely regulated. Read the terms carefully and make sure the card covers the specific medication you need, offers a lower price than your insurance or Medicare coverage, is free to use, and doesn’t require you to share your personal information.

6. Clinical Trials

Clinical trials may offer a way to access new desmoid tumor treatments before they’re widely available, usually at no cost to you. By enrolling, you may be able to try a new targeted therapy or other oncology treatments designed to stop or slow the growth of desmoid tumors. Some clinical trials may help cover costs such as travel and other trial-related expenses. Participation is voluntary, and you can leave a trial at any time.

Clinical trials play an important role in evaluating the safety and effectiveness of new drugs. Trials are carefully regulated by the U.S. Food and Drug Administration (FDA) and help potential new treatments earn FDA approval. If you’re interested in learning more about clinical trials, talk to your healthcare team. They can answer your questions and help you find trials that may be appropriate for you.

7. Social Workers and Patient Navigators

Many cancer centers have social workers or patient navigators who can help manage the financial side of desmoid tumor treatment. These professionals are familiar with insurance issues, financial assistance programs, and other resources for patients and caregivers.

You can usually ask your doctor, nurse, or the hospital’s patient services or front desk to connect you with a social worker or patient navigator. Speaking with someone who understands the ins and outs of paying for medication can help you learn about available resources.

8. Support Groups

Joining a desmoid tumor support group can also help point you in the right direction. People who have been through similar experiences often share practical tips and information about financial resources that may not be widely advertised.

You can search for online or local support groups using the Desmoid Tumor Research Foundation search tool. The Desmoid Project also runs free support groups and organizes a retreat for people living with desmoid tumor. When you’re living with a rare disease, sharing information and connecting with others can help you feel more empowered, less alone, and confident in your healthcare decisions.

9. Your Healthcare Team

Talk to your healthcare provider about any financial concerns you’re facing. If you’re struggling to afford treatment, you’re not alone. Your care team is likely familiar with the financial challenges of desmoid tumor treatment and may be able to suggest additional resources, alternative treatment options, or financial assistance programs to help reduce costs.

If figuring out how to pay for medications feels overwhelming, don’t give up. Getting the treatment you need is important for your health and quality of life.

Join the Conversation

On MyDesmoidTumorTeam, people share their experiences with desmoid tumor, get advice, and find support from others who understand.

How do you afford desmoid tumor medication? Let others know in the comments below.