To set the stage: it had been a successful 7 months of figuring out my new role as an oncology patient financial advocate. Things were clicking, processes and workflows were making sense, and, most importantly, I was helping patients with cancer.
On one Friday, the clinic at St. Luke’s Cancer Institute was busy. I was anticipating finishing my shift on time because I had weekend plans. Right before logging off, I received a message from our oral chemotherapy department with a request to help a patient cover the co-pay for his multiple myeloma medication fill that was due the following week. After quickly glancing through the patient’s chart and income document, I checked several websites for independent, charitable foundations. The patient met the eligibility requirements for 3 separate foundations that had funds open for patients with multiple myeloma. I then decided that I would wait until Monday to work on the application for the patient, given the fact that few funds were open this late on a Friday afternoon.
It had been a successful 7 months of figuring out my new role as an oncology patient financial advocate. Things were clicking, and, most importantly, I was helping patients with cancer.
Upon returning to work on Monday, I confidently called the patient to inform him of this news and obtain his consent to enroll. After I explained what exactly independent foundation assistance is and how the fund will cover his extremely high out-of-pocket responsibility, the patient went silent. I could hear him taking a few breaths over the phone; he thanked me and continued by telling me that he felt relieved because he spent the entire weekend isolating himself away from his family, feeling stressed and scared to make a decision that would have financial implications for his family.
My heart sank. Following their workflow, the oral chemotherapy pharmacy department also called the patient on Friday afternoon and informed him about the high co-pay, leaving the patient with a mountain of fear and uncertainty to deal with throughout the entire weekend.
After finishing my phone call with the patient, I sat there and reflected on his words; it was the first time in 7 months of working that I truly understood the impact of my role. I was not there to simply submit prior authorizations to payers, submit internal charity applications, or apply for drug assistance on patients’ behalf. This role was so much more than that. This role was about connections and helping patients access their anticancer treatment so that cost is not a barrier (also known as financial advocacy). This role is more than its title, and I was more than a name on my organization’s staffing chart.
Patients with cancer experience many different financial burdens as a result of their disease and throughout all stages of their treatment journey. This is known as financial toxicity—the harmful impact that high costs of treatment have on a person’s quality of life (also referred to as financial burden or financial distress).1 Factors that contribute to financial toxicity include lack of insurance coverage, loss of wages, and high co-pays and deductibles. Supportive care, such as financial advocacy services, are an important element of equitable and comprehensive health care. Financial advocates in oncology assist patients with drug assistance, insurance optimization, disability and Family and Medical Leave Act (FMLA) paperwork, government programs, internal and external independent charity funding, prior authorizations, and much more.
Below are the top 5 domains to consider when implementing and providing financial advocacy services to patients with cancer:
- Benefits verification: It is crucial to verify patients’ benefits before their consult and treatment start. This is an important part of the process, so you can level-set patients’ insurance needs and network status, know if any prior authorizations will be a factor, and inform the need for co-pay assistance with patients’ oral and/or infusion prescriptions.
- Distress screening: This part of the process will help patients get familiar with the available financial advocacy services even if they do not think they need financial assistance from a patient advocate at the time. It is important that all patients are screened again during treatment, especially if there is disease progression or other clinical changes, as this could now present a different challenge for the patient (ie, loss of wages or need for FMLA paperwork).
- Prior authorization: Having insurance is important. However, insurance alone does not prevent patients from experiencing financial toxicity. Before a patient proceeds with their planned treatment, it is vital to verify with their insurance provider if any prior authorization requirements are needed for the recommended treatment plan. If prior authorization is required, keep in mind that it might take a few days for the insurance provider to approve, so be sure to ready the patient for any potential prior authorization delays.
- Insurance education and optimization: In an ideal world, every patient would understand their insurance coverage. However, there are many layers to insurance that can be confusing. It is important that the patients understand what is being discussed regarding their treatment plan and insurance coverage. As needed, connect with patients again during the open enrollment season or when they experience a change in income, employment, treatment plan, or other circumstances. This gives financial advocates the opportunity to check in with patients and determine if they need assistance.
- Patient assistance: Luckily, there are patient assistance options available for those being treated with oral and infusion prescriptions. These patient financial assistance programs are immensely helpful for those who are uninsured because patients can receive compassionate use drugs (otherwise known as free drug). These types of financial assistance can take many forms: patients with government insurance can tap into independent foundation assistance if they meet income requirements; commercially insured patients can access co-pay assistance; and both government and commercially insured patients can be eligible for compassionate use drugs in cases of denial or off-label use if they meet all eligibility requirements of the assistance program.
It is evident that the financial advocates within cancer programs and practices are integral members of the multidisciplinary cancer care team and deserve a seat at the table during patient care discussions. When faced with patient care delays, many times the delay stems from a financial or payer barrier that financial advocates can proactively mitigate to ensure patients begin their treatment on time, remain and comply with treatment, and focus on their physical health rather than the financial implications of cancer care.
Financial Advocacy in Oncology
For this ever-changing and challenging field, the demand to remain up-to-date on proven financial mitigation and intervention strategies is higher now than ever. The field of oncology financial advocacy is deserving of industry standard compensation, career ladder development and implementation, as well as professionalism. It is important that financial advocates are seen by all staff as key members of the care team, ensuring that clinical and nonclinical staff work in tandem with and are knowledgeable of the critical services these individuals provide.
Systemic policy change is also necessary to address financial toxicity in oncology. Financial advocates can play a key role in advocating at the state and federal level on behalf of the patients they serve. Many have heard firsthand from their patients the harsh reality they face after receiving a cancer diagnosis. Therefore, financial advocates can shine a brighter light on the patient experience that is directly impacted by our legislatures, drug manufacturers, and payers. These experiences should then be used to inform policy change for the betterment of patients.
The ACCC Financial Advocacy Network
While there are many changes on the horizon and growing complexity in the financial advocacy field, it is crucial that anyone assisting patients with cancer is up-to-date on proven financial mitigation strategies. The Association of Community Cancer Centers (ACCC) has many resources available for patient advocates, including financial advocates, to help them start their jobs successfully. These resources have been developed by the ACCC Financial Advocacy Network and include a bootcamp training, onboarding, training playbook, toolkit, and a fully digital Patient Assistance & Reimbursement Guide, as well as the newly developed ACCC Financial Advocacy Services Guidelines. All the mentioned resources were created by advocates for advocates, ensuring that knowledge within this field is passed down.
One of the most important resources is the newly released Financial Advocacy Services Guidelines (available as a free download at accc-cancer.org/fan). We saw a need to revamp the 2018 edition to align with the growing changes in the field. These guidelines are a work of love for everyone in financial advocacy who aim to drive standardization across its landscape. We created the guidelines to describe the impact that financial advocacy services can have on people with cancer and the overarching healthcare system. The guidelines are a set of consensus-based statements that have collectively been identified by subject matter experts of diverse perspectives as the necessary pieces of financial advocacy that must be provided to all patients with cancer, regardless of an organization’s size or resource level.
I was not there to simply submit prior authorizations to payers, submit internal charity applications, or apply for drug assistance on patients’ behalf. This role was so much more than that.
The field of financial advocacy has garnered the attention of people with many different variables, such as their diverse education and knowledge level, who provide different types of financial advocacy services in a given cancer program or practice. These guidelines are necessary for all financial advocacy programs, so that financial advocates can ensure all patient guidelines will further support program development by helping staff determine what needs to be evaluated and how to define success for financial advocacy programs.
Financial advocacy in oncology has come a long way, yet it has also become more challenging over the years. In the field of payer policy changes, insurance optimization hurdles, and higher premiums, deductibles, and coinsurances is an army of financial advocates who are ready to turn over every stone to find the means needed to get patients the access to care they deserve.
View the 2023 Guide to Patient Support Services
- Qasim Hussaini SM, Gupta A, Dusetzina SB. Financial toxicity of cancer treatment. JAMA Oncol. 2022;8:788.