Insurance and Costs of DLBCL Treatments

In the first year, stem cell transplant costs averaged about $301,000. Over two years, costs jumped to about $422,000 with stem cell transplant therapy. Hospital-stay costs made up about $169,000 of these expenses in the first year, according to the patient insurance claims in this survey.

Discussing the specifics of your 2L treatment with your health care team may not be the most enjoyable conversation, but it's an important step toward managing your condition.

What Will Insurance Cover?

Once you and your doctors agree on a 2L treatment plan, your next conversation will most likely be with your insurance provider. Depending on your insurance plan, your deductibles, copayment requirements, and the type of benefits provided, the amount that your insurance will pay for R/R DLBCL therapy can vary greatly.

These three basic steps can help you determine what costs your plan may pay for:

1. Review your plan documents carefully. Look at your "Summary of Benefits and Coverage" to confirm which cancer treatments, prescriptions, and hospital stays are included. Also, become familiar with your copayment requirements, deductibles, and total out-of-pocket limits.

2. Ask about precertification requirements. Many advanced therapies, like stem cell transplant, require prior authorization from your insurer. Make sure your doctor's office submits all needed paperwork.

3. Check your Explanation of Benefits (EOB). These forms list what your insurance paid and what you may still owe. If something looks incorrect, call your insurer for clarification.

If reviewing these details on your own sounds confusing, ask for help. Your oncologist's office will likely have a billing expert who is skilled at filing claims with insurance providers. Insurance policy language can be confusing, so finding a "translator" can help relieve the guesswork when you're trying to figure out what your policy does – or doesn't – cover.

Also, many insurance providers have case managers trained in helping people diagnosed with various types of cancer who can help you understand your insurance benefits and offer advice. Learning what your policy will cover can help you make decisions as you choose your health care providers, treatments, and treatment facilities.

Resolving Issues With Your Insurance Company

With a good basic sense of the costs your insurance provider will and will not cover, you may feel some relief about moving forward with your 2L treatment. But sometimes, a test, procedure, or service that your doctor ordered may be denied by your insurance coverage. This can be frustrating – especially when you're already feeling stressed about your condition. But don't give up. If a treatment is denied, you can file an internal appeal with the insurance company and, if necessary, request an external review by an independent reviewer.

Going through the appeals process may take time and effort. Keep detailed records. Write down dates, names, and reference numbers for every call with your insurer. Keep copies of all letters and emails.

If you're feeling overwhelmed, don't go at it alone. Involve your health care team. Doctors and hospitals often have staff dedicated to helping patients navigate insurance disputes. They can submit letters of medical necessity to strengthen your case. Ask your doctor if they have a knowledgeable advocate on their health care team to help you through the process.

There may be other sources of help as well. For example, if the appeal is for coverage of a specific medication, some drugmakers may be able to help you with your appeal. And other patient advocacy agencies and organizations may be able to help.

Financial Resources for Patients and Families

Along with members of your immediate health care team, you may find oncology social workers and financial counselors within the hospital or health care network where you are being treated. Some hospitals and cancer centers even have financial assistance programs to help with the cost of care.

There are also national community nonprofit organizations that specialize in providing assistance and support for people living with DLBCL and their loved ones. These organizations realize that treatment costs for R/R DLBCL are just one part of the impact you and your family may feel if your cancer returns. For example, you may also need help with the cost of travel to your treatment facility, or to help pay for basic expenses, such as housing and food.

Consider contacting the following organizations to find out what assistance may be available to you:

Blood Cancer United (previously Leukemia & Lymphoma Society). Offers copay assistance and travel grants for eligible patients

Finding Support Along the Way

Although the costs of treatment may increase with progression after frontline treatment, keeping a positive outlook and taking a proactive approach can help empower you to find financial relief. Double-checking your insurance coverage, keeping careful records, asking the right questions, and tapping into resources provided by local and national organizations are all ways you can take action.

Feeling overwhelmed? Put together a team of helpers (family, friends, health care professionals, caseworkers, etc.) who can help you get the resources available to you. You might even ask a trusted family member or friend to head up your L2 team as you navigate the medical, emotional, and financial aspects of your R/R DLBCL care.

Relapsed or refractory DLBCL can bring health challenges as well as significant financial stress, but today, there are more resources available than ever before. With the increase in L2 treatment options, there has also been an increase in support and financial assistance for people living with R/R DLBCL. At every stage of your journey, it's important to keep searching for answers and remember that you are not alone.