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Association of Community Cancer Centers Issue Financial Advocacy Guidelines

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Patients and their families facing financial burdens "don't have to try to carry the load all alone," as one ACCC Guidelines Task Force member tells CURE®.

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Schneider understands the impact that finances can have on patients during a cancer journey.

The Association of Community Cancer Centers (ACCC) has released Oncology Financial Advocacy Services Guidelines to support cancer programs and practices offering services to help patients “prevent, detect and mitigate financial hardship during cancer care,” with those guidelines serving as “the only standardized framework exclusively for oncology financial navigators,” according to an announcement from ACCC.

“I'm hoping patients and their families or caregivers are able to experience the support and the feeling that they don't have to try to carry the load all alone, that we have experts within all of our cancer centers that can help them get that insurance information, get that financial information and help take a little bit of that burden off of them, (and) also help them to reduce some of that out-of-pocket costs by us finding the resources needed to help them in that area as well,” said Lori Schneider, oncology operations manager at Green Bay Oncology in Green Bay, Wisconsin and a member of the ACCC’s Guidelines Task Force which developed the Financial Advocacy Services Guidelines.

Schneider, an ACCC board member and former chairperson of the ACCC Financial Advocacy Network, has worked in healthcare for more than 20 years, and she understands the impact that finances can have on patients during a cancer journey.

“Financial burden is very significant,” she said. “We've had patients say they don't want to continue treatment, they will try to reduce their dosages sometimes if it's an oral medication, giving them sub-optimal outcomes with their diagnosis. They really try to take matters into their own hands sometimes to find alternatives, which probably are not the best. This (set of guidelines) really allows them to stay on track, and with the best medications, the best treatments possible to help them get them to the best outcome possible.”

ACCC and partners Triage Cancer, CancerCare, the National Patient Advocate Foundation and the Academy for Oncology Nurse and Patient Navigators gathered a panel of financial advocacy experts and patient advocates from 39 organizations to develop consensus-based guidelines which, according to an ACCC news release, “offer an evidence-based framework for cancer programs and practices of any size or resource-level to implement financial advocacy programs for the patients they serve, highlighting key services, program management and partner engagement functions.”

The 43 guidelines were grouped into three domains: financial advocacy services and functions, program management functions and partner engagement functions.

“Our goal and focus of the Financial Advocacy Guidelines is to help give cancer centers some platform to start with,” said Schneider. “We know that there are cancer centers across the United States that have just small startup programs … and then we have some that are very well-developed, so it's (about) how do we all come together to support those smaller programs, or even to help a developed program grow even more, to become more patient-centric, more involved in what a patient may need and what patient financial navigation may look like? So, we're able to finally show how we want to all get to an enhanced level of providing the best care possible, and this will actually give you step-by-step directions on how to get there.”

Much has changed since initial financial services advocacy guidelines were developed by ACCC in 2018, as Angie Santiago, chair of the ACCC Financial Advocacy Network and manager of oncology financial advocacy at Sidney Kimmel Cancer Center at the Thomas Jefferson University Health System in Philadelphia, wrote in the introduction to the recently released, revised guidelines.

“Today, the term ‘financial advocate’ can encompass many members of the cancer care team, such as financial counselors and navigators, oncology pharmacy staff, social workers, and more,” Santiago wrote. “Yet patients’ need for financial advocacy services throughout the cancer care continuum is becoming more urgent as both health care costs and coverage complexity increase.

“Results from a 2019 Patient Advocate Foundation survey shows that 63% of patients facing a serious illness rank financial distress as a fate worse than death.The financial cost of treatment is a top concern among patients in limited resource and underserved populations, and their families’ financial viability is an important goal of care. As cancer care teams prioritize symptom and side effect management to improve outcomes for their patients, including treatment effectiveness and quality of life, financial hardship is increasingly being considered a toxicity that must be proactively managed.”

For patients concerned about facing a financial burden, Schneider said that while there are several organizations with resources available — Triage Cancer, the Association of Oncology Nurse Navigators, the National Patient Advocacy Foundation and the Patient Advocate Foundation among them — patients should first check to see what resources are available through their cancer center.

“Start at your cancer center to see if there's somebody who can help navigate it, because this is overwhelming,” she said. “You know, a patient is already having to deal with a new diagnosis and a lot of times not having control over what's happening in their life, and this can cause more confusion. My recommendation is try to find an expert.

“ACCC has amazing resources, we have free resources that anybody can get to, that we can help with. Honestly, I've helped people that have put messages on LinkedIn that say, ‘Hey, I'm struggling, I don't know what to do. I'm a patient with breast cancer, just lost insurance. Who's in my area that can help?’ and the community helps. The patient advocate community is so huge and helping anybody who just raises a red flag. So, it's just a matter of finding that person hopefully locally or nationally.”

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