The ACCC Financial Advocacy Network is the leader in providing professional development training, tools, and resources that will empower providers to proactively integrate financial health into the cancer care continuum and help patients gain access to high-quality care for a better quality of life.
Karen Carter is a financial advocate at Carol’s Wish—a community-based financial navigation program of the nonprofit Colorado Ovarian Cancer Alliance located in Denver, Colo. The program began in 2018 in honor of Carol Dauer, who fought a three-year battle with ovarian cancer before passing away. Prior to the start of Carol’s Wish, Carter faced her own battle with cancer after being diagnosed in 2009 with intraperitoneal cancer. She became acquainted with the nonprofit during her treatment and has since become a dedicated volunteer, helping the Colorado Ovarian Cancer Alliance with its annual health fair, fundraiser, and gala. With a background in patient advocacy for AmeriCorps, Carter became one of the first financial advocates of Carol’s Wish. “I was very happy and excited to join Carol’s Wish,” Carter says. “I wanted to jump on board to see what I might be able to do for individuals facing the same journey that I did over a decade ago. It's not a job for me, it's a calling.”
Carol’s Wish offers financial advocacy services to patients at two cancer clinics located in the Denver metropolitan area. The financial navigation program began with a mission of providing financial advocacy services to patients with ovarian cancer, but due to increases in patient need, Carol’s Wish financial advocates help referred patients with any type of gynecologic cancer. Carol’s Wish receives about 50 patient referrals every month, including those with non-malignant diagnoses, and its team of two financial advocates offer their services at the cancer clinic, in patients’ homes, or over the phone.
Information about Carol’s Wish is included in both cancer clinics’ new patient packets, and patients are usually referred to a financial advocate by their care team. Once referred, Carter gathers all necessary information on the patient: their diagnosis, their treatment plan, insurance status, and any financial concerns. She is equipped to help patients optimize their insurance, apply to Medicaid, apply to available financial assistance options, and provide support in other areas patients may be concerned about. For example, Carter always asks patients what upcoming bills they have and what they are concerned about. She asks this so patients can feel comfortable sharing anything else that may be unrelated to their medical care. When a patient told Carter that her state property taxes would be due soon and was concerned about the costs, Carter quickly found a program the patient qualified for that would cut the tax bill in half. The team at Carol’s Wish takes pride in their ability to address an array of patients’ needs. “Karen possesses the perfect blend of dogged persistence, creative thinking and compassion for her patients, which is why she has literally saved lives in this role,” says Rachel Dauer, a financial advocate at Carol’s Wish.
A widow in her early 60s presented to a partner cancer clinic with abdominal pain and a mass in her abdomen. She was immediately scheduled for surgery and referred to Carol’s Wish. After taking a second look at the patient’s insurance status, Carter learned that the patient was underinsured. Her insurance would only cover a small portion of the hospital bill per day (about $750 a day) and would not cover any of the surgeon’s costs. The hospital then told the patient that the cost of her surgery and care would be $30,000 in total and that $7,500 needed to be paid out of pocket on the day of her surgery to begin surgery. With news of the cost, the patient declined treatment, stating: “Oh, the pain is not that bad. I will wait seven months to get another insurance policy during open enrollment.”
Carter knew she couldn’t let the patient wait seven months before receiving treatment. In an effort to help, she first began researching to see if the patient qualified for Medicaid. Because the patient was self-employed and made well over Colorado’s Medicaid income limit, Carter suggested the patient gather all her business-related receipts to see if any business deductions could be made to bring her income amount down. Through dedication and great patient engagement, Carter helped prove the patient’s income was low enough to qualify for Medicaid and got the patient signed up later that afternoon. “As a result, the patient had her surgery completed in 22 days rather than six months later, and she had zero out of pocket costs,” Carter says. “She was so grateful following the surgery after admitting what a stressor this all really was on her.”
Wendy Morris is an oncology financial resource specialist for radiation oncology patients at Northside Hospital Forsyth in Cumming, Ga. She began her career in financial advocacy in 2007, when she was first hired to the billing department of a radiation oncology private practice. Over the following decade, Morris’ role adapted to meet patients’ needs, as she started reviewing estimates with patients to help them understand their treatment costs. Northside Hospital then purchased the private practice, and Morris was immediately introduced to the health system’s financial resource team. She is now one of four financial resource specialists within the health system and provides radiation oncology financial navigation services at two locations, seeing about 25 to 60 patients a week.
Morris helps radiation oncology patients by reviewing their estimates, collecting deposits in advance, and, most importantly, helping them navigate insurance and financial assistance options if needed. “It's a very personal service that we provide,” Morris says. “You get attached to patients. You follow them through their successes, their treatment, and their recovery. It is very rewarding.” A key part of Morris’ job is completing a benefits review sheet for patients to help them better understand their insurance coverage and out-of-pocket costs. She then ensures patients understand the billing process at Northside Hospital, including the difference between the physician’s bill and the hospital’s technical charges. “Patients will also bring bills that are unrelated to their radiation treatment just because they know I can provide them with as much information as possible,” Morris says. “I know radiation, and I know billing. I am a good resource for patients.” Before patients leave their consultations with Morris, she addresses their financial needs, including assistance with Northside Hospital’s financial assistance program, to help patients afford their care. She will then make referrals to a cancer care liaison if patients mention other needs, like transportation and psychosocial.
Accessing financial assistance for radiation oncology treatments is a challenge many financial advocates may face. This is because financial assistance options for radiation oncology are not as abundant as those that are available for medical oncology (e.g., chemotherapy and supportive care medicines). Fortunately, Morris can offer Northside Hospital’s financial assistance program to patients who need help with paying their bills and/or deposits. At patients’ consults, insurance benefits are reviewed, and they are prescreened for the hospital’s financial assistance program if financial distress is expressed. If patients qualify for the program, Morris will provide the application and review with them the required documentation needed for enrollment.
Morris recently helped a patient who was diagnosed with endometrial cancer and uninsured due to job loss. During the patient’s consult, Morris noticed that the patient was reluctant to schedule her next appointment but was able to review her financial circumstances. The patient then received the Northside Hospital financial assistance program application but did not return it. Following the consult, Morris noticed the patient kept canceling her appointments. After getting the patient on the phone and learning that she was afraid of being denied enrollment into the program, Morris reassured the patient that all she needed to do was come back into the office, complete the application, and she would qualify for help with all deposits and bills. The patient then returned to the hospital for treatment the following week. “So many patients are too proud or afraid to ask for assistance,” Morris says. “Getting them to apply can be a challenge.”
Gretchen Van Dyck is a financial counselor at Green Bay Oncology in Green Bay, Wisc. She also serves on the Wisconsin Association of Hematology and Oncology (WAHO) Policy Engagement Committee. Prior to a career in financial advocacy in oncology, Van Dyck joined Green Bay Oncology in 2011 as a receptionist. In this position she built strong connections with the patients she would regularly see. Her passion for helping patients and grow within her organization led Van Dyck to transition to a financial counselor in 2012. Van Dyck quickly taught herself the basics of financial advocacy when emergency coverage was needed on the financial counseling team. “I honestly think it was the best thing that could have happened because I learned so much from it,” she says. She quickly got up to speed on how to help patients in medical oncology alleviate the financial burden of cancer care, including all options available to them and how to apply for assistance.
After working with patients in medical oncology for four years, Van Dyck refocused her financial counseling efforts on patients in radiation oncology and patients with gynecologic cancers as her team expanded to encompass more of the hospital’s oncology patients. “I take care of the patients surgical and radiation authorizations, review the patients benefits with them, and assist with any financial concerns they have with their treatment,” Van Dyck says. “I love what I do.” She explains that the hardest part of working with patients in radiation oncology is the lack of available options to help them pay for their treatment. Unlike the abundance of manufacturer and independent foundation assistance commonly available to patients on intravenous or oral chemotherapy, Van Dyck can offer radiation patients the community care program funded by her hospital, payment plans, and minimal foundational assistance from their community. As Van Dyck began to see this need grow, she joined her state’s hematology and oncology association to advocate on behalf of her patients for policy change at the state level.
Van Dyck also participated in the Association of Community Cancer Centers Virtual Hill Day on May 12, 2021 and joined her fellow WAHO members in calls with their Wisconsin state representative and senator as they shared the issues most pertinent to their patients. The focus of the meeting, Van Dyck shares, was to speak on the impact co-pay accumulators have on patients struggling to afford their cancer treatment costs, showing a need for policy intervention. For others looking to advocate for patients in oncology at the state or federal level, Van Dyck shares that “we have to look at it from the patient perspective. Put yourself in their shoes and just fight for them.”
Van Dyck shared with her state representative and senator about a patient with a GI stromal tumor, who’s treatment is long term. The patient is unable to take the generic version of her prescribed medication due to adverse reactions to the drug. Therefore, the patient must receive and take the costly name brand version of her prescription. She also recently received a letter from her insurance company stating that she could not use the prescribed medication’s manufacturer co-pay card against her out of pocket due to its policy. This means that even with the $30,000 a year assistance the co-pay card would provide, the patient is responsible for her out of pocket costs and must also pay the difference between the costs of the brand name medication and the generic medication.
The team at Green Bay Oncology is currently fighting for the patient to help change the insurance company’s policy. “The amount of money and the stress that would be alleviated from these patients if the insurance companies would just let them use the assistance that is available to them is immeasurable,” Van Dyck says. “If they’re not able to pay these bills off, they just accumulate year after year.”
Joelle Ferguson is a financial counselor at the Arthur G. James Cancer Hospital and Richard J. Solove Research Institute at The Ohio State University (the James) in Columbus, Ohio. She began her career in healthcare in the billing department for another hospital’s surgical physicians and surgical groups. Ferguson was then hired by The Ohio State University, Wexner Medical Center in 2010 as a pre-certification representative where she completed prior authorizations and checked patients’ insurance. “I enjoyed the job, but I wanted something different,” she explained. "I wanted to be more hands on and feel like I was making a difference by helping patients with insurance or any other issues.” She has been a financial counselor for the James for six years now.
With her insurance and pre-certification background, Ferguson quickly became a key member of her team. At the James, financial counselors specialize in specific areas of financial advocacy. For example, Ferguson specializes in helping patients with out-of-network insurance coverage and veterans access financial assistance or optimize their insurance to ensure they can receive optimal care at the James without financial stress. She emphasizes that one of the most important roles she plays in patients’ care is providing them with all information needed regarding their insurance coverage and helps direct patients to solutions that best meets patients’ needs. Ferguson helps patients understand their diagnosis and treatment costs and finds solutions for their treatment costs, including waiving deposits. “We never want our patients to walk through the doors and end up bankrupt when they are all done with their care,” she says.
Ferguson was also one of the first on her team tasked with understanding chimeric antigen receptor (CAR) T-cell therapy and helping patients find financial assistance for this costly treatment. She dedicated her own time to educate herself on the novel therapy and will now train others on how to best help these patients. Helping active and retired veterans also comes with its own set of nuances. The James is one of a few cancer centers in the state who sees veterans. In many cases, Ferguson checks patients’ billings prior to meeting with them to ensure it is done correctly and that any prior authorizations are identified and sent to billing management. Sometimes she must take the extra step to get in contact with the local Veterans Affairs hospital to ensure patients’ prior authorizations are correct. “I love this job,” she says. “If you need help, I'm going to help you. And all that matters is that the patient gets the best care and the best answers they need from us.”
Ohio is home to many Amish and Mennonite communities and treating these patients requires understanding and support from the entire cancer care team, including those in financial counseling. Ferguson helps many Amish patients, who do not have healthcare insurance or access to technology and mail. When these patients do not have enough money to pay for their cancer care, they rely on people like Ferguson and those in their community for help.
Recently, an Amish patient was diagnosed with an orthopedic cancer and had to travel over 2 hours to receive treatment. The patient was billed for over $200,000 as self-pay and could not afford the amount out of pocket. In response, Ferguson quickly called the Amish Church Fund to see if the patient was a member of the organization's community. As a member, Ferguson was able to get the patient’s bill paid by the church community within the week. “These families bond together. If they don't have a church fund to turn over their bills to, their community joins together to pay them," says Ferguson. “And that is just simply overwhelming to me. It's all about providing the patient everything we can and sometimes it takes our whole community to be able to provide patients what they need.”
Amy Elgin is an oncology patient resource coordinator at AnMed Health Cancer Center in Anderson, SC. She is a self-taught financial advocate who provides services to two oncology programs in her hospital: the Anmed Health Cancer Center and a private practice. She started her oncology career in 2015. She was weary of her position at first because she knew what patients’ experiences were like after losing her mom to cancer at 13-years-old, but this experience has since drove her passion to advocate for oncology patients. Upon being hired, Elgin immediately revamped he oncology patient resource program to better meet patients' financial needs and to help her program and health system save money. "I just took things into my own hands,” she says.
After her program lost their pharmacy assistance staff member during her second year on the job, she started to notice more patients that needed help. So, she started Googling "patient assistance" and "pharmacy assistance" to find any help available. Elgin’s services are in high demand because she is the only financial advocate providing support to four oncologists, one gynecologic oncologist, two radiation oncologists, four nurse practitioners, and one physician assistant. She has since received training from NaVectis and was part of Vivor’s pilot program (a third-party financial assistance platform at a cost). But she considers the ACCC Patient Assistance & Reimbursement Guide and Google to be her best friends. “The ACCC Patient Assistance and Reimbursement Guide is one of my go-tos,” she says. “I have tabbed each company name, so when I hear a drug, I can quickly turn to the page.” As an oncology patient resource coordinator, Elgin helps patients find and access all aspects of financial assistance. She is trained to understand and know how to apply for Medicaid on patients’ behalf and on how to optimize patients’ insurance, and she is self-trained on how to access assistance for patients with disability, track financial assistance received by free drug programs, and even on how to get patients access to free mobile phones and cell phone service (You can read her Oncology Issues article "Helping Patients Access Free Mobile Phones and Cell Service" for more information on helping patients with this need.) Elgin does it all.
Because of her passion and know how, Elgin provides patients security in their financial health so that they can focus on their physical health. “I tell people when they come in here to let me take care of the financial stress, so they can deal with their medical stress,” she says. “Financial stress can impact patient's health just as much as any other stresses. It's a huge part of their treatment plan in my opinion. And I've finally gotten the oncologists on board to understand that." Elgin’s efforts to improve her program’s financial advocacy services has greatly impacted the view all oncology staff have on her support to patients. After doing the necessary research, she hopes to transition her title to oncology financial navigator.
Elgin helped a patient a few years ago who was in his twenties and diagnosed with glioblastoma multiforme. At the time of diagnosis, the patient was uninsured, unemployed, and was accompanied by his mother in all appointments. At news of this diagnosis and insurance status, Elgin quickly helped the patient enroll in Medicaid and supplemental security income, which helped pay for all of his medical bills. Unfortunately, the patient recently passed, and his mom reached out to Elgin to share their sadness and thank her for all the help she provided. “We get those patients that just grab a hold of our hearts and when they pass you just cry,” Elgin says. “But you also know they're in a better place."
Mia Nutter, MBA, is a financial navigator at Winship Cancer Institute of Emory University in Atlanta, Ga. She is also a ACCC Financial Advocacy Network Advisory Committee member. She has worked in healthcare for 20 years and has been a patient advocate for the majority of that time. She began her career as a financial counselor in a level 5 trauma center in her organization’s Emergency Room, where she worked with patients to help them access financial assistance.
She then transitioned into the role of senior financial counselor, supporting the entire hospital system and assisting all patients with accessing financial assistance whose bills would soon be sent to collections and forgotten. Through this experience, Nutter saw many patients who could not afford their payments and who would file for bankruptcy once their accounts were sent to collections. Others would deplete their life savings to continue paying for their treatment. “Listening to patients and hearing story after story about how the cost of healthcare is too expensive and that they are often faced with paying for medications or paying for food, I knew I had to be an advocate and resource for these patients,” says Nutter.
Her passion and drive quickly led her to gain leadership opportunities and ultimately joined the revenue management team where she stayed for over 12 years. “I always felt my real passion was the connection I had with my patients and assisting them during their most challenging times—financially and emotionally—so I decided to focus on being a financial advocate,” says Nutter. “I became a financial navigator to be the voice of the patient because many patients will discuss their struggles and anxiety with financial debt with me more often than they would with their provider or family. By gaining their trust and proving that I am an advocate for them and that I will find a solution to their financial strain through various financial assistance programs, patients can focus on their treatment and healing.” Nutter has found that many patients will cancel their appointments or choose to not receive their oncology treatment because of their felt inability to afford treatment. But through education on the various community and manufacturer resources available that provide financial assistance, Nutter ensures patients’ treatment costs are 100 percent covered.
A patient was scheduled to receive infusion treatment for lymphoma on a Friday, but her healthcare plan was terminated the prior Monday without the patient’s knowledge. Due to a mix up in the patients’ insurance, a change in her premium cost, and decrease in work, Nutter’s patient was facing a serious question: “Do I continue treatment?”
While Nutter and the patient investigated into why the insurance was terminated and getting it reactivated, Nutter knew the patient couldn’t wait the month it would take get the insurance cleared. She immediately took the patient’s case to her cancer program’s financial assistance program and had the patient apply. She met with the Charity Department’s representatives and pleaded her case. Her patient needed chemotherapy treatment which could not be delayed, so she asked them to process the patient’s application immediately. Nutter gained the department’s approval within 24 hours to cover the costs of the patient’s clinic and chemotherapy treatments (costs up to $16,000). She also gained coverage for the patient if oncology surgery and/or inpatient stay was needed. Nutter also helped the patient re-enroll in the Marketplace to obtain insurance for other services not related to her cancer diagnosis. “She was so relieved that she can receive her treatment without any delay in care that she broke down in tears for me working with her and not giving up,” says Nutter.
Aimee Hoch, LSW, is an oncology financial navigator at Grand View Health in Sellersville, Pa. She is also an ACCC Financial Advocacy Network Advisory Committee member and Voice Task Force member. Before becoming a financial navigator, Hoch was a social worker for 14 years at Grand View Health, a small community hospital about 45-minutes outside Philadelphia. While in this role, she noticed an increase in patients seeking help with accessing and affording their cancer treatment.
Hoch discovered through her own research that establishing a financial navigation program at her cancer program would be key in meeting patients’ long-term needs. But she also knew that advocating for this expansion to her leadership would require diligent work. Hoch shared with her cancer program and leadership patient stories, her day-to-day experiences, and metrics to prove that a dedicated financial navigation program could meet this patient need. In just a year and a half of advocating, Hoch established the financial navigation program at Grand View Health and became its first financial navigator—a part-time role that grew into a full-time position. She is no longer placing a band-aid on patients’ financial needs to ensure treatment for one day. Instead, she helps patients become financially healthy, so they can receive treatment for their entire cancer journey. “Patients are able to participate in their healing and recovery more. And they don’t have to worry about their finances,” she says.
One of Hoch’s recent patients was receiving treatment for lung cancer when she suddenly lost her job and insurance coverage due to the pandemic. This patient was the sole provider of the family and was facing multiple other stressors in her life. She was concerned that she wouldn’t be able to continue her treatment. Once made aware of the patient’s situation, Hoch acted. She secured a foundation fund to cover the costs of the patient’s premium for COBRA coverage and applied for the manufacturer's free medication program on behalf of the patient. The patient qualified for both programs and could receive treatment without worry of cost. As 2021 approached, the patient’s COBRA premiums would nearly double, and Hoch knew she would have to identify a more sustainable and affordable solution. Hoch helped the patient pick and secured an affordable Marketplace plan. Hoch also noticed the foundation fund previously used was available for 2021 and applied on behalf of the patient. On top of insurance premium assistance, the patient also qualified for the manufacturer’s co-pay card program. For the rest of 2021, the patient will no longer have to worry about her insurance premium or co-pay costs associated with her cancer treatment.