Since 2005, American Cancer Society has sponsored the Health Insurance Assistance Service, a unique initiative to help cancer patients navigate the private coverage system and to educate policy makers about how coverage works for patients with this serious and chronic condition.
The American Cancer Society (ACS) has worked tirelessly to ensure that the voices of cancer patients, survivors, and caregivers are heard and that every cancer patient can access timely, high-quality cancer care. Since 2005, ACS has sponsored the Health Insurance Assistance Service (HIAS), a unique initiative to help cancer patients navigate the private coverage system and to educate policy makers about how coverage works for patients with this serious and chronic condition.
The HIAS program has helped monitor the progress of healthcare implementation as it evolves through the cancer lens, in a manner that is readily understandable to a broad public audience, the media, and policy makers. Additionally, the program offers patients and their caregivers much needed resources to help them bridge the all too frequent financial barriers they experience relative to their care.
GROWING BURDEN ON THE PATIENT’S WALLET
The costs of cancer care have been increasing and are projected to continue to rise over the next decade. Increasing out-of-pocket (OOP) expenses can affect cancer patient’s care, often resulting in a lack of treatment adherence due to inadequate or unaffordable health insurance.1 ACS’ HIAS, initiated in 2005, was designed to help patients learn more about available health insurance options. HIAS offers cancer patients under age 65 a free resource that connects them with health insurance specialists who work to address their needs. HIAS specialists gather detailed information from the patient such as cancer type, treatment protocol, insurance status, and work to help them navigate through their insurance issues. Currently, HIAS provides health insurance information and resources to more than 3300 patients per year.
Prior to the implementation of the Affordable Care Act, HIAS primarily addressed issues faced by uninsured patients. Today, HIAS is approached by a growing number of individuals who are underinsured. Cost sharing has become a significant issue and cancer patients are often confronted with high deductibles, co-pays, additional costs for out-of-network care, and coinsurance. These are serious financial challenges for a cancer patient, and can place them at significant risk of not being able to afford their much needed healthcare. Many patients are financially vulnerable and their cancer diagnosis and treatment can impede their ability to work, while some cancer patients lose their jobs altogether.1
Between 2004 and 2014, OOP costs for covered workers grew 77%.2 Cancer patients generally have high OOP expenses, and patients may pay $4000 to $5000 out of pocket per year for their cancer care.3 Of those expenses, typically one-third are attributed to prescription drug costs, one-third for physician fees, outpatient procedures and other ambulatory care costs, and lastly, one-third to inpatient care and related costs.3 HIAS works to identify programs and services to help patients and their caregivers find resources to help them pay for their care and complete the treatment in a timely fashion. Yet many patients continue to fall through the cracks, as many of the programs and resources are inadequate in addressing the patient’s financial needs.
HIAS: PROVIDING OPTIONS
In 2015, 3378 patients benefitted from the services of the staff at HIAS, 2747 of whom had multiple issues that they discussed with HIAS staff. These issues ranged from an inability to access specialized cancer care or being unable to afford coverage. In , we illustrate common patient issues and the percentage of patients broken down by race, that illustrates some of the challenges faced by patients in accessing timely cancer care.
The 2 leading issues—the inability to access specialized cancer care, and the inability to pay for coverage—are significant barriers to care for these patients. A patient who cannot access a specific cancer treatment will often apply for charity care from the healthcare system. Often, patients have to forego care if they are uninsured, but if they are underinsured, they normally have to go through an appeals process.
The ability to resolve these issues is somewhat limited by the resources available to cancer patients and their caregivers. HIAS specialists work with the patient and their caregiver to identify resources to help them access the care that they need. Those who contact HIAS are asked a series of questions about their insurance needs, employment status, income level, current/former insurance status, and diagnosis. Subsequently, a health insurance specialist will research and provide information about the insurance options that are most appropriate for the patient.
The health insurance specialists receive state-of-the-art training to enable them to provide guidance for general and state-specific insurance needs. Specialists provide information regarding a variety of health insurance issues, federal laws, and state-specific laws and programs. However, in many cases, although coverage options were identified for the patient, they did not completely address patient needs. For others, no insurance option was available to solve the patients’ issue. As a result, HIAS staff work with patients to guide them to noninsurance resources (such as hospital charity care programs) to assist with getting medical care. In , we have highlighted some of the noninsurance resources that HIAS utilizes to help patients access the care they need following their cancer diagnosis.
COLLABORATION WITH THE PATIENT ADVOCATE FOUNDATION
Patients often find the insurance system difficult to navigate and a burden they cannot bear, particularly given the impact of cancer on their lives. In addition, many patients face issues with insurance adequacy, availability, and affordability that leave them without appropriate treatment, or burden them with insurmountable healthcare-related debt. Access to information on insurance resources can ensure these patients are exploring all options available to them. Yet for far too many, there are either inadequate or unaffordable insurance resources that present access to care issues.
Data consistently show that cancer patients, around the country, face substantial barriers to care including the major barriers described earlier in this article (IOM, 2008). Even those individuals who can find a way to pay for care often have to choose between financial stability and receiving the entire course of therapy.
As illustrated in , a majority of patients that contact HIAS are referred to the Patient Advocate Foundation (PAF) for further assistance with their financial needs. ACS and PAF established a strategic collaboration in 2009, giving millions of patients and their families, quick access to timely cancer information and specialized resources. Furthermore, this collaboration significantly extends our ability to provide case management services to patients and their families experiencing financial or legal issues. This provides desperately needed assistance to cancer patients who are in danger of losing their jobs or their healthcare coverage, or who have other situations that might impact access to care. PAF offers assistance to patients with specific issues that they may encounter with their insurer, employer and/or creditor regarding insurance, job retention, and debt-crisis matters relative to their diagnosis of life-threatening or debilitating diseases. Professional case managers and attorneys, specializing in mediation, negotiation, and education, advocate on behalf of patients experiencing issues with access to care, job retention, and debt crisis.
The collaboration with PAF has resulted in millions of dollars of debt relief for patients and their caregivers through charitable contributions, write-offs, correcting coding and billing errors, and overturning insurance denials. However, there are opportunities to reduce the number of individuals who have to manage issues with high cost sharing, including information regarding insurance options and coverage, as well as policy efforts that seek ways to control healthcare costs.
PUBLIC POLICY INITIATIVES TO RAISE AWARENESS
As noted in a workshop conducted by the Institute of Medicine (now called the Health and Medicine Division), on the costs of cancer care, many patients enroll in a silver plan, which results in an estimated $10,000 in OOP costs for a family of 4 with an income of $47,000.1 It is imperative that patients be at the center of decision making about their treatment including the costs of care and the coverage their insurance provides. In order to accomplish this, patients must be equipped with clear, accurate, and up-to-date information about their cancer diagnosis, treatment options, and insurance options and coverage. When faced with making decisions about insurance coverage, individuals often select plans that seem affordable upfront, and this often results in coverage that emerges as being expensive due to high deductibles and other cost-sharing issues. Better education and information regarding insurance coverage is critical to ensure adequate understanding of coverage policies.
Public policy can play a significant role in the fight against cancer. Lawmakers and policy makers, across the country, consider legislative proposals and policies that could help people with cancer. As the Society’s nonpartisan advocacy affiliate, the American Cancer Society’s Cancer Action Network (ACS CAN) encourages elected officials, candidates, and policy makers to make cancer a top national priority. ACS CAN works to improve access to quality, affordable healthcare so no one is forced to choose between their life and their lifesavings to get the care they need.
As part of those efforts, ACS CAN continues to monitor innovative models of cancer care to better understand their impact on cancer patients and their families. The ACA has supported the development of 3 key payment and delivery reforms that can play an important role in enhancing the quality of care delivered to cancer patients—accountable care organizations, patient-centered medical homes, and bundled payments—that share common elements directed at fostering coordinated, patient-centered care for patients with complex, chronic illnesses such as cancer. For the typical cancer patient who frequently experiences a variety of challenges navigating the US healthcare system, these new delivery models demonstrate the potential to improve the quality of cancer care. Given an aging population and the high proportion of our economic resources already devoted to healthcare,4 it is critical that we continue efforts to improve cancer care for all. EBOKatherine Sharpe, MTS, is senior vice president, Patient and Caregiver Support, American Cancer Society.
Melissa Fellers is senior consultant, American Cancer Society.
Mandi BattagliaSeiler is team supervisor, Health Insurance Assistance Service, American Cancer Society.
Address for correspondence
Katherine Sharpe, MTS
American Cancer Society
250 Williams Street
Atlanta, GA 30303