Changes in our economy and healthcare system (ie, the Affordable Care Act, accountable care organizations, evolving reimbursement models) have given birth to a new member of the healthcare team: the financial advocate. Although many hospitals and large clinics have some form of patient advocates and nurse navigators, not all of these professionals are trained in the complex financial issues inherent to the care of treating a patient with cancer. Furthermore, many professionals are too thinly spread, and see too many patients to develop an expertise in advising on any single disease type.
Cancer is one of those disease processes that is particularly challenging and requires specialized knowledge of the complex nature of diagnosis, copayment, coinsurance, drug assistance, and financial assistance. Most facilities have only one advocate who serves many purposes, which again creates difficulty in being an expert in financial assistance options for patients with one disease type.
I recently attended a conference about financial advocacy. I was delighted to see so many people from all over the country in attendance. It afforded me the opportunity to speak with as many professionals as possible, and augment my knowledge on the specifics of what they do and how they do it. I had the assumption before attending that financial advocates would be mostly nurses and social workers, but I was mistaken; it was a diverse group. Some of the advocates were laypersons who got involved due to a personal experience and decided to make it a career, while others were nurses and social workers. Some had degrees in education, finance, or communications. Regardless of everyone’s backgrounds, their common goal was to advocate for patients.
During the presentation, the speakers acknowledged that the bulk of financial advocacy work is done by laypersons with little or no college education. The highest level of education of the majority of the people employed in this job is a high school diploma; this was both fascinating and reassuring. The mix of clinical, psychosocial, and nonclinical professionals working together in concert provides the best combination for patients and their families. I had a chance to speak with some of the advocates and was delighted to see how they have embraced the role to become experts in finding resources, reimbursement, and supportive services for patients, providers, and families. These advocates were particularly engaging, possessed a wealth of knowledge, and were extremely passionate about their work.
In my conversations, I discovered some important information about the number of patients they service and how their services are supported. Advocates were not limited to hospitals and clinics, as large physician practices were jumping on board as well. One aspect that I found particularly fascinating was that some facilities have disease-specific and drug assistance advocates. Only a handful had specific advocates for nonmedical-related expenses and issues. Through these conversations, combined with further research I did after the conference, I discovered that regardless of who is performing the job, there are never enough financial advocates to meet the needs of our patients.
Realities of Patients with Cancer
Comprehending a cancer diagnosis is not something anyone wants to deal with, and the cost of care is the last thing that most patients want to wrap their mind around. The cost of having cancer and/or surviving cancer presents many challenges for the patients, caregivers, families, and providers. Skyrocketing healthcare costs, the price of drugs, plus physician fees and other commodities, such as time off from work, healthcare premiums, copay and coinsurance, possible loss of income, meals, transportation, and other services, can be overwhelming to a person newly diagnosed with cancer.
A survey conducted in 2012 by the Association of Community Cancer Centers, “Cancer Care Trends in Community Cancer Centers,” demonstrated that nearly all of respondents reported that they were seeing more patients who needed help with copays and/or coinsurance. Community cancer centers were spending increased time assisting patients with identifying resources to help with costs for medications, missed work hours, transportation, and more.
A survey conducted by the Association of Oncology Social Work (AOSW) revealed that for more than one half of patients with cancer, treatment costs negatively impact their focus on recovery. According to the survey, 66% of patients with major financial challenges suffer with depression or anxiety, 29% delay filling prescriptions due to financial pressures, and 22% skip doses. Sixty-three percent of surveyed oncology social workers said financial issues reduce compliance with treatment, and 55% of patients surveyed said the stress of dealing with costs impaired their ability to focus on their recovery. In addition, 40% of patients surveyed had depleted their savings, nearly 30% reported dealing with bill collectors, 54% of those handling a major financial burden said it had become more difficult in the past year to afford treatment, and 68% of responses reported that patients experience financial hardship from the medical bills.
Only 36% of patients have discussed treatment costs with their oncologist, and only 16% of patients and caregivers report that they believe their oncologists even think about the financial implications of the treatments they prescribe. In fact, only about one half of patients feel comfortable speaking with health professionals about financial issues. Too often the physician does not address cost with the patient until after treatment is under way and the patient receives the first bill. This can be devastating to the patient, and hinder the success of treatment by causing incredible stress, anxiety, and depression.
Findings show that at initial diagnosis, nearly all cancer patients consider treatment effectiveness before all other factors when determining their therapy, ranking the cost of treatment last in their decision-making process. The physicians can supply the knowledge and expertise of care, and financial advisors will help patients navigate through the nonclinical, which is just as significant in the patient’s success in fighting, beating, and surviving this complex disease. Data show that the stress related to finances can impact compliance and potentially present serious consequences. Consider these statistics from the AOSW survey:
- Treatment costs negatively impact the ability to focus on recovery for 87% of patients with catastrophic or major financial burdens due to cancer treatment, and 75% of these patients constantly worry about financial issues due to cancer treatment.
- Almost one half (46%) of patients who have experienced a financial burden from their cancer have cut back on necessary expenses such as food to pay for cancer treatment.
- 24% of respondents indicated they suffered a relationship issue in their efforts to afford treatment for cancer.
- 6% of patients sold a home or relocated due to the financial stress, and 3% experienced a home foreclosure.
- 56% of patients were not at all prepared to handle the financial burden of cancer, while only 7% indicated they were completely prepared for it.
These numbers tell the story as to why this new emerging profession is so important to the success of cancer treatment. Physicians are faced with many challenges regarding diagnosis, treatment, and care for their patients with cancer, but many do not realize the impact that finances play in patients’ decisions and how it can hinder care. Acknowledgment of this other component to oncology care should assist oncology practices in making the decision to create a position for a financial advocate within their office. It is another salary to pay, but the return on investment is a decrease in the burden on current staff. Current staff members do not have adequate time or resources to provide financial assistance services or reimbursement reduction with the recent increase in underinsured patients.
Physician practices are then faced with balancing a good patient experience with financial concerns. The financial advocate knows how to speak with patients and their families about all the difficult topics, and assist the oncology practice in meeting the growing financial concerns of their patients, streamlining the billing, appeals, denial, verification, and drug assistance or replacement programs. Easing financial concerns have been proven to decrease stress, anxiety, and depression, and help the patient focus on recovery. Financial advocates pay for themselves by giving the oncologist, the patient, and their families peace of mind during a difficult and frightening time.