Managing Finances with ROS1+ Treatments in the U.S.
Figuring out how to pay for your cancer care and your cancer treatments can be as stressful as the cancer itself. Unfortunately, The ROS1ders have no financial assistance to offer fellow patients. However, we want to share some information that has been developed by Triage Cancer and others to guide you through the struggle. Please note that all of these materials were written for American patients.
You weren’t expecting cancer. Your budget wasn’t expecting it either. ROS1+ cancer drugs and treatment can be expensive. ROS1+ drugs are in different stages of development, so you may be facing the financial struggles and benefits of being part of a drug trial, or you may be figuring out how to fund a fully approved treatment plan. Moreover, results are uncertain and you care as much about the quality of your life right now as you do your bank balance. How do you decide where to spend your money?
You have a lot to sort out, but being informed is the first step to taking charge of your finances in this stressful time. We hope the resources below can be a starting point as you sort through financial management decisions. Each resource also provides links to additional resources that may be helpful. Note that these resources were not developed especially with ROS1+ patients in mind.
A Quick Guide to Managing Medical Bills – This guide, developed by Triage Cancer, covers the language and processes providers typically use as they communicate about medical bills. There are also some tips and tools about organizing medical bills and records and paying your medical bills.
Your Financial Guidebook for Adult Cancer – This guide, offered by Family Reach and The LiFT Network, is designed to help adult cancer patients manage the financial side of their diagnosis. This comprehensive guide uses checklists, tips, and a five step process to help you think things through. It is unique in that it appreciates the wide range of life circumstances, discusses personal rights and responsibilities, and uses a “workbook” structure to help you personalize the information provided.
About Employer-sponsored and Individual Health Care Plans
Cancer, and the cost of ROS1+ cancer treatments, will likely prompt you to look at your health care plans in a whole new way.
This Quick Guide to Health Insurance, prepared by Triage Cancer, helps you understand insurance plans in easy-to-understand language. There are links to state laws and assistance programs that may apply, and other resources as well.
Employers also often provide access to Medicare supplement plans. These are typically better than those available on the market. (See About Medicare.)
American ROS1+ patients can turn to Medicare for coverage for one of two reasons. You can either qualify for Medicare Benefits as part of your SSDI (Social Security Disability Insurance) Benefits, or you may be turning 65 years old. Either way, making the switch from private insurance to Medicare can be overwhelming. This Quick Guide to Medicare 2022 breaks down the most essential information about Medicare.
Additionally, below are some animated videos shared by Triage Cancer.
Important ROS1+ patient considerations:
Traditional Medicare co-payments for ROS1+ TKI medications are currently set at 5 percent of the cost. This can be prohibitive, as described in this story about a fellow ROS1der.
Medicare Advantage plans may seem less expensive, but the copay of your ROS1+ TKI may be higher, and they might not cover consultation with a ROS1+ expert clinician. Be sure to consider both Medicare Advantage plans and traditional Medicare with a Medicare supplement when assessing cost.
Employers often provide Medicare supplement options for employees and their spouses. Some ROS1+ patients have found that employer-provided plans provide better coverage for ROS1+ TKI drugs than marketplace Medicare supplements.
Direct Financial Assistance
Even with private insurance or Medicare, patients may need assistance to manage distress, financial hardship, insurance, non-medical expenses, employment rights, mental health, and financial management. This Cost of Care Resources guide provides a number of links you can explore.
If you are taking crizotinib (Xalkori) or lorlatinib (Lobrena), you may be eligible for assistance from Pfizer Oncology Together. As you apply for assistance, note that it is Pfizer’s desire to overcome financial obstacles for patients to receive critical treatment. However, you will need to apply for assistance, and you may need to “appeal” the decision. The appeal is a way to help Pfizer understand how your personal expenses make paying for treatment difficult even if you technically do not meet income requirements. In short, you may need to be persistent. For more information, visit pfizeroncologytogether.com.
In some cases, drug companies assist patients with travel planning and expenses for clinical trials. For more information, see The ROS1ders guide to trials.
Financial assistance for Rozlytrek (entrectinib) is available through the Genentech Patient Foundation
The Pfizer Pledge Warranty Program for XALKORI was extended at least through 2022. This program refunds out-of-pocket costs for XALKORI if the patient discontinues XALKORI for a clinical reason before the fourth 30-day supply is dispensed. Pfizer Pledge is available to cash, commercial (those with employer-sponsored or private insurance), and Medicare Part D patients. Click for eligibility requirements and program terms & conditions.
Nancy’s list provides a long list of financial support available to cancer patients.