By Bruce Buckley

With cancer treatment costs spiraling upward, the Association of Community Cancer Centers (ACCC) issued new guidelines to help counteract the financial distress that can impede patients’ therapeutic progress.

“Patients’ need for financial advocacy services throughout the cancer care continuum is becoming more urgent as both healthcare costs and coverage complexity increase,” wrote Angie Santiago, the manager of oncology financial advocacy at Jefferson Health’s Sidney Kimmel Cancer Center, in Philadelphia, in the introduction to ACCC’s new Financial Advocacy Services Guidelines (bit.ly/3YYFmmY).

Ms. Santiago, who is also the chair of ACCC’s Financial Advocacy Network, cited a 2019 survey from the National Patient Advocate Foundation showing patients’ worries about the financial costs of treatment outweigh their concerns about the short- and long-term side effects of cancer treatments and even the possibility of dying (bit.ly/3QZTEBZ). “Financial hardship is increasingly being considered a toxicity that must be proactively managed,” she stated.

Escalating oncology medication costs are a key factor in patients’ financial distress. In 2022, U.S. spending in the category reached $88 billion, up from $58 billion four years earlier, according to the IQVIA Institute’s 2023 report on global oncology trends (bit.ly/3sBA4Sq).

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Growth has been driven “by new products and the wider use of earlier launched drugs, especially immuno-oncology checkpoint inhibitors,” the report stated.

IQVIA foresees the upward trajectory persisting in this country, with oncology spending “expected to increase to the 12-15% range as more than 100 new drugs are anticipated to launch across novel modalities.”

A Comprehensive Update

ACCC’s new document replaces a set of guidelines from 2018 that had become less relevant due to the increasing costs of cancer treatment. Last year, ACCC undertook a comprehensive effort to develop guidelines more reflective of the new financial reality. It convened a task force of seven experts to oversee the consensus-building process on the suggested guidelines, which emerged out of a comprehensive literature search.

A panel of 46 experts, ranging from financial advocates and oncology providers to patients and patient advocates, was appointed to review and rate the suggested guidelines according to whether they fit as minimum or as enhanced financial advocacy services—or were needed at all.

Based on panel feedback, ACCC decided on 43 guidelines intended to ensure the identification and mitigation of financial distress for patients with cancer, their caregivers and their families, while helping patients gain access to affordable, high-quality cancer care.

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Olalekan Ajayi, PharmD

“These guidelines provide the how-to for mitigating financial toxicity,” Olalekan Ajayi, PharmD, MBA, the chief operating officer of the Highlands Oncology Group, in Fayetteville, Ark., and the current president of ACCC, told Specialty Pharmacy Continuum.

The guidelines cover a series of financial advocacy services that range from the minimum required to reduce patient distress to the most resource-intensive and costly to implement, which are likely achievable only by larger oncology centers and practices.

Of the 43 guidelines detailed in the document, only two achieved consensus, meaning at least 75% of the 46 experts agreed they were either a minimum or an enhanced financial advocacy service:

  • The minimum service: Meeting with patients upon request to answer questions about financing the costs of their cancer care.
  • The enhanced service: Integrating financial advocacy into existing cancer care planning and services and facilitating multidisciplinary cancer care team communications regarding patients’ financial concerns and resulting psychosocial/emotional or medical effects. (The guidelines suggested tumor boards as one appropriate venue for addressing financial advocacy issues.)

A 4-Point Call to Action

In its new Financial Advocacy Services Guidelines, ACCC proposed four actions to advance the identification and mitigation of financial distress across the cancer care continuum.

  1. Use the guidelines to assess financial advocacy services and develop plans to expand and improve where needed. ACCC and its partners plan to develop a site assessment tool to support the effort.
  2. Recognize and promote the need for more research to build agreement and consistency regarding financial distress screening, advocacy interventions and the role of financial advocates.
  3. Commit to action to expand the nation’s overall capacity to deliver financial advocacy services and address systemic barriers to affordable care.
  4. Work to broaden financial advocacy services to include not only cancer patients currently receiving treatment, but also individuals at increased risk, such as those with hereditary syndromes and genetic predisposition to cancer.
Source: ACCC (bit.ly/3YYFmmY).

The Costs of Inaction

Dr. Ajayi said the cost of not implementing the guidelines would be substantial. “If you don’t commit the necessary resources to making sure you have a very good financial infrastructure, you’re looking not only at lost revenue but also at financial toxicity for patients who aren’t able to make those payments.”

This burden falls heavily on Medicare beneficiaries who are on fixed incomes and have limited savings. As the nation’s aging population increases, Dr. Ajayi said, “more and more patients rely on Medicare and Medicare Part D, which can mean expensive copays and coinsurance costs for their treatments. That’s a big source of financial strain for patients.”

High out-of-pocket expenses also impede patients’ medication adherence. One study found that 30% of anticancer drug prescriptions were not filled by Medicare Part D patients who lacked subsidies to alleviate their financial distress (Health Aff 2022;41[4]:487-496).

Pharmacists ‘Crucial’ to Financial Advocacy

Dr. Ajayi said pharmacists as medication experts were “crucial” to financial advocacy. They “understand the cost implications of cancer drugs,” he said, and may be able to suggest more affordable therapeutic alternatives “that a physician isn’t aware of.”

Sarah Hudson-DiSalle, PharmD, the pharmacy manager of the Medication Assistance Program and Reimbursement Services at The Ohio State University’s James Cancer Center, in Columbus, also emphasized the financial advocacy role of pharmacists. “Patients look to their pharmacist, or to the pharmacist on their healthcare team, for assistance in navigating issues related to their medications, which may include financial hardship or toxicity.”

Dr. Hudson-DiSalle, who is also a member of the ACCC advisory committee and who served on the panel, noted that “pharmacists can be highly effective financial advocates by becoming knowledgeable about key aspects of financial navigation and helping to remove barriers that impede the ability to provide high-quality patient care.”

Dr. Ajayi noted that achieving equitable access to affordable cancer care will require community effort. “We’re going to have to reach out and form networks and partnerships to get patients access to the care they need. I don’t think any cancer center can do it in isolation.”

He suggested patient transportation as one bridge-building opportunity. “Getting patients from their homes to the cancer center is a big problem in cancer care today. One way we were able to solve that here was by building a network with a nonprofit organization that focuses on transportation for cancer care patients.”


Dr. Ajayi reported no relevant financial disclosures. Dr. Hudson-DiSalle’s views expressed in this article are her own and do not reflect a direct representation of her employer or ACCC.

This article is from the December 2023 print issue.