Clara Lambert is the director of financial navigation at TailorMed, a leading healthcare technology company dedicated to removing financial barriers to care. Driven by its best-in-class platform, TailorMed is building the largest network of patients, providers, pharmacies, and life science companies focused on ensuring all patients can afford treatment. Prior to joining TailorMed, Clara served as a financial navigator at the Bhorade Cancer Center at Advocate Good Samaritan Hospital in Illinois and the Cowell Family Cancer Center in Michigan, where she helped pioneer a nationally recognized financial navigation program.
A frequent speaker at healthcare conferences nationwide, Clara is a recipient of the Academy of Oncology Nurse & Patient Navigators Leadership Council Award: Putting Evidence into Practice. She is a past chair of the Association of Community Cancer Centers Financial Advocacy Network Advisory Committee. Clara holds a BA in integrated professional studies (business, healthcare administration, and information technology) from Davenport University and a graduate certificate of public health from Loyola University. Having personally experienced the financial burden of a family member’s cancer diagnosis, Clara is passionate about helping patients and caregivers secure the resources they need.
Five years ago, when I was working as a financial navigator at a community cancer center in Michigan, a breast cancer patient entered my office with an all-too-familiar dilemma. She had recently started treatment and was struggling with the physical effects of chemotherapy. She was also dealing with the emotional toll of her diagnosis, which was not only weighing on her but also on her partner and their 3 young children. But her most urgent concern was how she and her family could afford the astronomical costs of her care. Her chemotherapy drugs alone cost more than $50,000 per dose. Between medication, travel to and from our facility, and other expenses—as well as lost income due to her inability to work—the financial burden had become unmanageable. She faced a decision no one should have to make: Should she pay for necessary living expenses, including her family’s mortgage, food, and childcare, or pay for lifesaving treatment?
Sadly, her story is not uncommon. Far too often, patients must overcome steep financial obstacles to get the care they need. In the United States, skyrocketing healthcare costs across all conditions have led to $140 billion in medical debt.1 Last year, nearly 20% of Americans—more than 46 million people—said that they did not seek treatment for a health problem in the last year due to costs.2
For patients facing an acute, rare, or chronic disease such as breast cancer, the financial impact can be even more devastating. The National Cancer Institute reported that in 2019, the patient cost of cancer care in the United States was more than $21 billion.3
Fortunately, cost-saving resources are available to help breast cancer patients manage the burden and avoid what is known as “financial toxicity.”4 The challenge is that many patients are unaware of these resources or unable to access them.5 Here are 4 ways to ensure you have the benefits and funding you need to afford care:
1. Make Sure Your Insurance Is Optimized
Whenever I meet with a new patient, the first step is to review their healthcare coverage and make sure they are enrolled in a plan that helps them lower their out-of-pocket costs.
If you have employer-based insurance, take advantage of your company’s open enrollment period to reevaluate your existing coverage and change your plan as needed. Open enrollment typically occurs once per year, but employees who have life-changing events—such as moving out of their plan area, loss of employment, or shifting from full- to part-time work—may be eligible for special enrollment. Speak to your human resources representative and find out if you qualify.
If you have Medicare, the open enrollment period takes place between October 15 and December 7 each year.6 Medicare beneficiaries with low incomes7 can qualify for the Social Security Administration’s Low-Income Subsidy program, also known as Extra Help. This federal program provides support for prescription drug premiums, deductibles, and cost-sharing for eligible patients with annual incomes at 150% of the federal poverty level. Ask your provider to connect you with a financial navigator who can determine whether you qualify and help you complete the enrollment process.
In addition, open enrollment for 2023 Affordable Care Act (ACA)-compliant individual and family health plans begins on November 1, 2022.8 Until the end of 2022, patients can expect to find more aid and lower premiums compared with years past, thanks to the American Rescue Plan Act. To enroll in the most cost-effective plan, be sure to report any income changes to ACA administrators as soon as possible. Doing so may reduce expenses, either in the form of lower premiums or greater cost-sharing assistance. Visit Healthcare.gov and click “Find local help” to get ACA-certified enrollment support in your area.
2. Explore Patient Assistance Programs and Funds
There are a number of programs and funds created to alleviate the financial stress people with cancer face. These resources help cover the costs of medical care, cancer treatments, and prescription drugs.
Many drug manufacturers offer copay assistance programs, also known as copay cards or copay savings programs. These programs may cover all or part of your out-of-pocket costs for the treatment you need, including chemotherapy infusions. Most patients with private health insurance, no matter their income, are eligible for these programs. Once you’re enrolled in a copay assistance program, your insurance will pay their portion of the drug cost, and the drug manufacturer will pay some or all of your portion. Speak to your doctor or pharmacist or contact the pharmaceutical company directly to learn more.
If you have government health insurance, such as Medicare and TRICARE, a number of charitable foundations offer disease-specific grants. Eligibility criteria vary from program to program, but most require information about your household income and family size. Many also require information from your healthcare provider about your diagnosis and treatments before approving your application. The Patient Advocate Foundation and the Patient Access Network Foundation, for example, provide copay grants on a first-come, first-served basis to breast cancer patients who meet specific medical and financial criteria.
Some funds may have a wait-list, but do not be discouraged. It is best to apply and get on the wait-list, as some funds provide retroactive reimbursement once you are approved into the program. CancerCare’s Assistance Fund, for example, considers retroactive reimbursement for applicants who are actively receiving breast cancer treatment or have received treatment within 60 days of the applicant’s approval.
If you are uninsured and have an immediate need for financial assistance and cannot otherwise afford your prescriptions, many pharmaceutical companies offer patient assistance programs (PAPs). PAPs provide free or low-cost medications to cancer patients who are experiencing financial hardship and/or have no third-party insurance coverage.9
In addition, local, regional, and community- based assistance programs, as well as hospitals’ internal funds, can help cover treatment-related costs. Talk to your healthcare provider about the options that may be available to you.
3. Beyond Treatment: Get Help with Living Expenses
Many breast cancer patients, like the woman I worked with in Michigan, struggle to cover their general living expenses after paying for medication and treatment. For these patients, there are organizations that provide funding to cover costs such as transportation, childcare, mortgage and rent, utilities, and groceries.
The Pink Fund, for example, provides 90 days of nonmedical expenses to breast cancer patients in active treatment. The Susan G. Komen Foundation’s Komen Treatment Assistance Program provides funding for daily living expenses to breast cancer patients who meet the program’s eligibility criteria. The Provision Project offers financial relief to patients in active treatment for breast cancer, so no family is ever put in the impossible predicament of choosing between lifesaving cancer care and day-to-day expenses.
4. Lean on the Family Medical Leave Act and Other Government Protections
If you need to take time off work for cancer treatment and recovery, you may qualify for financial assistance through your employer’s disability coverage plans or government programs. The Family and Medical Leave Act is a federal law that allows eligible employees to take up to 12 weeks of unpaid leave for medical or specific family reasons.10 You do not need to take 12 weeks off all at once; leave can be intermittent, so you can take time off as needed.
If you are unable to work after you have used your paid time off (eg, vacation and sick days), your employer may offer short- and long-term disability plans that provide a continuation of income and benefits for employees who are medically disabled.
Short-term disability benefits—known as paid medical leave—supplement a portion of your income (usually 50%-80% of your salary) for up to 26 weeks.11 To qualify for short-term disability, you must be unable to work due to your diagnosis, treatment, or treatment side effects. Most short-term disability plans are managed by insurance companies, and eligibility requirements vary. Generally, you must show proof that you are unable to perform your job or carry out your work activities due to your cancer diagnosis and treatments.
Once short-term disability payments end, you may qualify for long-term disability (LTD) benefits under your employer-sponsored plan. Similar to short-term disability, LTD benefits pay a portion of your income—usually 60%—until you have recovered. Speak with your employer’s human resources department to learn more about your workplace short- and long-term disability coverage.
Social Security Disability Insurance (SSDI) is a federally run benefit program for those who have worked and paid Social Security taxes on their earnings in the past 10 years.12 To qualify for SSDI, you must have a diagnosis that meets the Social Security Administration’s standard for disability (eg, metastatic breast cancer).13 Approval may take 3 to 5 months, but some patients with advanced breast cancer may qualify for a Compassionate Allowance, which expedites the approvals process.14
For those who lose their employer-sponsored health benefits due to job loss or reduced work hours, the Consolidated Omnibus Budget Reconciliation Act (COBRA) gives workers the right to continue receiving benefits from your employer’s health plan for a limited period. If you opt for COBRA, you will be required to pay the entire premium for coverage up to 102% of the cost of the plan.15 If this presents financial hardship, disease-specific funds may help cover the cost of your health insurance premiums. The HealthWell Foundation, for example, offers funding for insurance premiums to assist breast cancer patients who meet certain financial criteria.
Take Advantage of Available Resources—and Do Not Go It Alone
For many breast cancer patients, the costs associated with medical care and treatment can quickly become overwhelming. By optimizing your insurance, exploring funding options to finance your medical and living expenses, and leaning on government protections, you can ease the financial burden.
You may have concerns about your family’s financial health but not know where or how to look for help. The good news is, you do not have to go through this alone. Oncology financial navigators are on staff at many healthcare facilities. They can help with insurance optimization and discuss payment options for any out-of-pocket expenses you incur related to cancer care and treatment. In recent years, new technologies have been developed that enable these professionals to quickly and efficiently connect patients with resources to reduce financial barriers.
Research shows that patients who work with financial navigators have an increased quality of life and higher survival rates.16 Essentially, navigators are there to help relieve any finance-related stress so that you can focus on what matters most: your treatment and recovery.
- Kluender R, Mahoney N, Wong F, Yin W. Medical debt in the US, 2009-2020. JAMA. 2021;326:250-256.
- Gallup. West Health-Gallup. 2021 Healthcare in America Report. www.gallup.com/analytics/357932/healthcare-in-america-2021.aspx. Accessed June 28, 2022.
- National Cancer Institute. Annual Report to the Nation 2021: Special Topic: Patient Economic Burden of Cancer Care. https://seer.cancer.gov/report_to_nation/special.html. Accessed June 28, 2022.
- Qasim Hussaini SM, Gupta A, Dusetzina SB. Financial toxicity of cancer treatment. JAMA Oncol. 2022;8:788.
- Smith SK, Nicolla J, Yousuf Zafaret S. Bridging the gap between financial distress and available resources for patients with cancer: a qualitative study. J Oncol Pract. 2014;10:e368-e372.
- Centers for Medicare & Medicaid Services. Medicare Open Enrollment. www.cms.gov/Outreach-and-Education/Reach-Out/Find-tools-to-help-you-help-others/Medicare-Open-Enrollment. Accessed June 28, 2022.
- Medicare Interactive. Extra Help basics. www.medicareinteractive.org/get-answers/cost-saving-programs-for-people-with-medicare/the-extra-help-low-income-subsidy-lis-program/extra-help-basics. Accessed July 5, 2022.
- HealthMarkets. When Is Open Enrollment for 2023? www.healthmarkets.com/resources/health-insurance/open-enrollment. Accessed June 28, 2022.
- Centers for Medicare & Medicaid Services. Pharmaceutical Manufacturer Patient Assistance Program Information. www.cms.gov/Medicare/Prescription-Drug-Coverage/PrescriptionDrugCovGenIn/PAPData. Accessed July 6, 2022.
- US Department of Labor. Fact sheet #28: The Family and Medical Leave Act. www.dol.gov/sites/dolgov/files/WHD/legacy/files/whdfs28.pdf. Accessed July 5, 2022.
- Congressional Research Service. Access to Short-Term Disability Plans: In Brief. https://sgp.fas.org/crs/misc/R46948.pdf. Accessed July 5, 2022
- Social Security Administration. Disability Benefits. www.ssa.gov/benefits/disability/. Accessed July 5, 2022.
- Social Security Administration. Disability Evaluation Under Social Security. www.ssa.gov/disability/professionals/bluebook/13.00-NeoplasticDiseases-Malignant-Adult.htm#13_10. Accessed July 5, 2022.
- Social Security Administration. Compassionate Allowances. www.ssa.gov/compassionateallowances/. Accessed July 5, 2022.
- US Department of Labor. Continuation of Health Coverage (COBRA). www.dol.gov/general/topic/health-plans/cobra#:~:text=The%20Consolidated%20Omnibus%20Budget%20Reconciliation,voluntary%20or%20involuntary%20job%20loss%2C. July 5, 2022.
- Knight TG, Aguiar M, Robinson M, et al. Financial toxicity intervention improves outcomes in patients with hematologic malignancy. JCO Oncol Pract. June 16, 2022:OP2200056.
For healthcare coverage:
For charitable funds:
The HealthWell Foundation: healthwellfoundation.org
The Patient Advocate Foundation: patientadvocate.org
The Patient Access Network Foundation: panfoundation.org
The Pink Fund: pinkfund.org
The Provision Project: provisionproject.org
The Susan G. Komen Foundation’s Komen Treatment Assistance Program: komen.org/treatment-assistance-program