- Research Article
- 10.1182/blood-2025-2638
Policy and systems solutions to expand timely access to CAR T-cell therapy: Findings from a national survey of oncology professionals
- Nov 03, 2025
- Blood
- Caroline Offit + 7 more +7
Publications from 2021 to 2026
Showing 10 of 32 papers
Policy and systems solutions to expand timely access to CAR T-cell therapy: Findings from a national survey of oncology professionals
Perspectives on barriers to timely biomarker testing in NSCLC: Implications for care.
51 Background: Timely biomarker testing is essential for guiding treatment in non–small cell lung cancer (NSCLC). Reflex biomarker testing, ordered by pathologists, integrates biomarkers into the diagnostic process. However, CMS policies, particularly the 14-Day Rule and lack of clarity on ordering authority, limit the use of reflex testing, disrupting standardized workflows and delaying care. This study explores how these policies affect cancer care delivery. Methods: In early 2025, LUNGevity Foundation, with the Association for Molecular Pathology and the American Society for Clinical Pathology, surveyed 115 healthcare professionals to determine the prevalence of standardized workflows, pathologist-ordered biomarker testing, and application of the 14-Day Rule. Results: Findings indicate strong support for pathologist-ordered biomarker testing for reflex testing and timely diagnosis. Most respondents (94%) agreed CMS should recognize pathologists as ordering physicians, with 49% preferring this recognition be provided through guidelines. The majority (74%) strongly agreed this change would improve patient care. Standardized protocols - especially with in-house testing - were more common when pathologists ordered biomarker testing. Yet at 42% of sites using or considering such protocols, pathologists were not the ordering physician. Among these, 57% wanted implementation guidance, and 46% sought regulatory or compliance clarity for how to implement pathologist-initiated testing. Application of the 14-Day Rule varied: 22% applied it to inpatients, 13% to both inpatients and outpatients, and 23% were unsure. Regardless, 78% of those applying the 14-Day Rule said it caused treatment delays, and 40% reported treatment was selected before results were received. When asked how costs of multi-gene panels for in-patients with advanced-stage cancer are managed, 30% of respondents said the laboratory absorbs the cost, and 39% were unsure. Conclusions: Hospitals face the challenge of navigating regulations that impact care delivery - particularly the 14-Day Rule and unclear policies on pathologists' role in ordering biomarker panels, which influence implementation of reflex biomarker testing in the NSCLC diagnostic process. Respondents strongly supported pathologist-ordered testing as essential for reflex workflows and improved patient care. The 14-Day Rule was cited as a barrier to timely treatment, and a cause of financial strain when hospitals bypass the policy to expedite testing. Many were uncertain how testing costs are managed under current constraints, highlighting the need for clearer institutional policies. Hospital administrators should assess the impact of these regulations on care delivery and consider workflow adjustments in collaboration with pathology and oncology. Further research will gather broader input to guide recommendations to CMS, pathologists, and oncologists.
Read moreAdvancing oncology policy through grassroots collaboration: A state society model for sustainable advocacy and cancer care delivery.
270 Background: Equitable cancer care requires policies that address patient access, affordability, and health system barriers. In response to this need, the Association of Cancer Care Centers (ACCC), in collaboration with 16 oncology-focused state societies, launched a national initiative in 2021 to strengthen state-led advocacy infrastructure and empower multidisciplinary oncology teams to influence policy change. Methods: Between 2021 and 2025, ACCC facilitated structured sessions with participating state oncology societies to support the development and growth of oncology-based policy committees and formalize scalable policy action plans tailored to each committee’s size, knowledge, and resources. To identify and implement effective strategies for engaging diverse provider voices in oncology policy, committees partnered with local lobbyists, national organizations, and advocacy coalitions. ACCC supported these efforts through resource sharing, virtual town halls, and cross-state mentorship. Results: Over the course of the initiative, more than 130 multidisciplinary oncology care team members from 16 state societies engaged in advocacy activities that contributed to measurable policy impact: Outcomes included prior authorization reform (Minnesota), cross-state collaboration to counter legislation limiting Affordable Care Act insurance protections (Missouri–Tennessee), and advancement of biomarker testing legislation through strategic partnerships (Colorado–American Cancer Society Cancer Action Network). Additional efforts included policy education linked to election cycles (Wisconsin post-election analysis), advancement of fertility preservation legislation through coalition building (Minnesota–Hawaii), the release of best practice guidance on capturing patient stories for legislative change (Wisconsin), and a multi-society education campaign empowering fellow-led advocacy. Conclusions: This model highlights the role of structured grassroots collaboration in advancing public policy that supports equitable, patient-centered cancer care. By uniting state-based societies across regions, the initiative demonstrates how policy infrastructure can be leveraged to improve care delivery and access across diverse oncology settings.
Read moreAssessing workforce trends and needs for oncology financial advocacy programs.
25 Background: Financial advocates (also known as navigators/counselors) are an increasingly important role on the multidisciplinary team to improve equitable access to care by assessing and addressing risks of financial distress for people with cancer and their families. The Association of Cancer Care Centers (ACCC) recently published consensus-driven guidelines for delivering financial advocacy (FA) services, but the field still lacks standard definition of roles, responsibilities, metrics, and benchmarks. ACCC’s Financial Advocacy Network Census survey provides an opportunity to monitor FA workforce trends over time. Methods: ACCC worked with an expert multidisciplinary committee to guide development of a Census survey. It was distributed electronically via Qualtrics to a subset of ACCC members (clinical and non-clinical staff involved in delivering FA services) in May-June 2023. Exploratory analysis was performed on 2023 Census data and results were compared to 2019-2020 Census data. Results: 95 respondents representing 70 unique cancer centers participated in the 2023 Census, compared respondents from 153 unique in 2019-20. Sample size varied between the two time points due to length of recruitment time. Most respondents were financial advocates (36% in 2023 vs 53% in 2019-20), followed by administrators (34% 3%), and nurses/nurse navigators (14% vs 21reported that their cancer center did not have any dedicated financial advocates (4% vs 10%). There was a decrease in the percentage of respondents reporting that their current level of FA staffing was sufficient to meet patient demand (13% vs 30%). A smaller proportion of respondents indicated that their cancer center did not track any FA metrics (17% vs 23%). More respondents reported receiving formal FA training (77% vs 30%). Conclusions: Despite variability in sample size across the Census time points, the trends are clear. There is growth in FA staffing since 2019, but patient demand for FA services appears to have outpaced workforce growth. There appears to be increased tracking of the impact of FA services, which can be used to support the business case for additional staff. Cancer centers can use ACCC’s FA Services Guidelines and corresponding assessment tool to measure how their current level of service delivery aligns with expert guidelines and specific standards for program metrics and training. Engagement in formal FA training has increased substantially, but an opportunity remains to reach more staff that support FA services to provide training (eg ACCC’s Financial Advocacy Network Boot Camp).
Read moreLeveraging a geographic information system (GIS) to identify lung cancer care disparities and opportunities in rural Appalachia.
78 Background: The Rural Appalachian Lung Cancer Screening Initiative is led by the Association of Cancer Care Centers (ACCC) and patient advocacy partners. Recognized by the White House Cancer Moonshot, this initiative seeks to improve lung cancer screening rates by partnering with health systems in rural Appalachia to develop and implement interventions. An 11-county region bordering West Virginia, Virginia, and Kentucky has significantly higher mortality and lung cancer incidence rates than the national rates of 35.0 and 54.0 per 100,000 people, respectively (Table 1). This region was identified as the focus area for the initiative with participation from health systems in Pike County, KY, and Buchanan County, VA. Methods: To understand availability of local resources, ACCC developed an interactive GIS tool that identifies screening and referral locations as well as essential services in the region. Lung cancer screening sites, oncology services, mammography locations, critical access hospitals, NCI-designated cancer centers, federally qualified health centers (FQHCs) and look-alikes, rural health clinics, and primary care/general health services were identified from publicly available data and data requested from state departments of health. Facilities were contacted to verify services when unclear. STATA 18 was used to combine and clean data for upload to Google MyMaps, creating an interactive map. Results: Of the 11 counties, all contain at least 1 FQHC or primary care site. However, 5 of the counties do not have lung cancer screening sites and 7 of the counties do not have oncology service sites (Table). The closest NCI-designated cancer centers to the participating sites are over 140 miles away. Conclusions: While there is a notable presence of primary care, access to lung cancer screening and oncology care is limited. Sites can utilize this map to inform development of interventions by considering potential geographical challenges, identifying referral sites, outreach opportunities, and partners to facilitate lung cancer screening and education. Further, these methods are replicable, and can be used to inform current access to care and improve equitable delivery of lung cancer screening in regions across the U.S. Distribution of lung cancer mortality, incidence, and infrastructure within initiative focus region. Region Mortality*(per 100,000) Incidence*(per 100,000) # Lung Cancer Screening Sites # Oncology Services Sites KY (1 county) 70 109.3 2 2 VA (6 counties) 45.0 – 61.4 42.9 – 68.6 4 3 WV (4 counties) 57.6 – 74.8 100.4 – 111.5 1 0 *Lung & Bronchus, 2016-2020 age-adjusted death rates (KY, VA, WV) and incidence rates (KY, WV). Lung & Bronchus, 2015-2019 age-adjusted incidence rate (VA). Source: statecancerprofiles.cancer.gov.
Read moreDeveloping consensus-based oncology financial advocacy services guidelines.
38 Background: Financial advocacy interventions help patients, and their families address financial hardship experienced through the cancer journey. However, how financial services are offered to patients varies greatly. Across the field of financial advocacy there is a lack of standardization of services, which is needed to accurately evaluate the impact of oncology financial advocacy. The Association of Community Cancer Centers (ACCC) Financial Advocacy Network (FAN) set out to revamp the Financial Advocacy Services Guidelines originally published in 2018, with the goal of providing cancer programs direction in implementing and improving financial advocacy services offered to patients with cancer. Methods: ACCC convened a task force of 7 multidisciplinary financial advocacy experts to guide the process of creating consensus-based financial advocacy services guidelines. The task force assembled a panel of 49 diverse oncology financial advocacy experts. A literature review and input from panelists was used to draft a list of guideline statements. Panelists went through 2 rounds of anonymous voting to inform revisions to the guideline statements. Consensus for the guideline statements was set at 75% agreement. The statements were rated as should not be a guideline, minimum guideline, or enhanced guideline. Cancer program staff completed a questionnaire upon downloading the guidelines. Results: After completion of the 2 rounds, the panel reached consensus that 43 statements should be guidelines. The guidelines are split into three main domains: financial advocacy services & functions; program management functions; and partner engagement functions. The updated Guidelines, which provide cancer organizations with the foundation to implement services to help reduce financial burdens of care, were published in March 2023 and are publicly available. From March 2023 until June 2023, it was downloaded by 93 cancer program staff members, of which 74% stated they will use it to assist in the development, implementation, and/or enhancement of a formal advocacy program at their organization and 58% responded that they have a financial advocacy program already implemented or have a financial advocate on staff. Conclusions: As financial advocacy grows more complex, interventions for patients with cancer are vital. The Guidelines provide expert-developed and consensus-based methods to assist cancer organizations with implementing financial intervention services. Importantly, the newly published guidelines will aid in closing existing gaps in delivery of oncology financial services as 48% of respondents stated they do not have a financial advocacy program or staff member. Further it will promote broader collaboration among partners to aid with assessment tools, creating valid measures and rigorous evaluation of the guidelines to improve cancer patients’ experience and reduce financial barriers to care.
Read moreDifferences in perception and use of remote patient monitoring among community and academic/NCI designated cancer programs.
563 Background: The benefits of remote patient monitoring (RPM) in oncology for reporting of adverse effects to improve patient outcomes are well-documented. To assess real-world use and perceptions of RPM, including its role with patient reported outcomes (PROs), the Association of Community Cancer Centers (ACCC) surveyed U.S. cancer program staff. Methods: Developed by expert advisors and patient advocacy partners, a survey of cancer program staff was distributed between December 2022 and January 2023. The survey included 25 closed and open-ended questions. Analysis was performed and responses compared using two-tailed Fisher’s exact test. Results: Of 128 staff respondents (52% MDs, 23% admin/managers, 22% other clinicians, 3% other cancer program staff), 40% worked in community, 38% academic/NCI-designated, and 20% private/physician practice settings. 34 U.S. states were represented. There was a high level of endorsement of RPM in the entire cohort; 86% of community and academic program staff agreed that RPM supplemented provider visits and informed clinical decision-making and patient/caregiver conversations. Among respondents using RPM (45%), 68% of community programs reported incorporating patient input into RPM program planning (vs 100% academic). (p=0.02). Compared to community programs, more academic programs reported planning/implementing RPM (57% vs 32%; p=0.02) and trended to have greater familiarity with RPM (80% vs 94%, p=0.07 NS). More community respondents (vs. academic) indicated concerns regarding patient comfort with RPM (80% vs 59%, p=0.05), access to a smartphone/computer (69% vs 45%, p=0.03), as well as barriers to RPM including securing funding (82% vs 57%, p=0.01) and EHR integration (61% vs 37%, p=0.02). In qualitative responses, 18% of community and 4% of academic staff described needs for provider education. Conclusions: Oncology staff across community and academic settings endorse the value of RPM to improve patient communication and clinical decision-making. There were more concerns and barriers to RPM planning and implementation reported by community programs. Nearly a third of community program staff indicated no incorporation of patient input to inform RPM planning. Further research into implementation barriers is needed, including funding/reimbursement strategies and tailoring patient/provider education to more equitably incorporate RPM across diverse cancer program settings.
Read moreSurvey of patients and physicians on shared decision-making in treatment selection in relapsed/refractory multiple myeloma.
Shared decision-making (SDM) is a key component of patient-centered healthcare. SDM is particularly pertinent in the relapsed and/or refractory multiple myeloma (RRMM) setting, in which numerous treatment options can present challenges for identifying optimal care. However, few studies have assessed the extent and relevance of SDM and patient-centered communication (PCC) in RRMM. To describe treatment decision-making patterns between physicians and patients in the RRMM setting, we conducted online surveys of patients and physicians in the USA to compare their perspectives on the process of treatment decision-making. We analyzed the surveys descriptively. Two hundred hematologists/oncologists and 200 patients with RRMM receiving second-line (n = 89), third-line (n = 65), and fourth-line (n = 46) therapy participated. Top treatment goals for physicians and patients included extending overall survival (among 76% and 83% of physicians and patients, respectively) and progression-free survival (among 54% and 77% of physicians and patients, respectively), regardless of the number of prior relapses. Thirty percent of physicians believed patients preferred a shared approach to treatment decision-making, while 40% of patients reported most often preferring a shared role in treatment decision-making. One-fourth of patients most often preferred physicians to make the final treatment decision after seriously considering their opinion. Thirty-two percent of physicians and 16% of patients recalled ≥3 treatment options presented at first relapse. Efficacy was a primary treatment goal for patients and physicians. Discrepancies in their perceptions during RRMM treatment decision-making exist, indicating that communication tools are needed to facilitate SDM and PCC.
Read moreAbstract A014: An analysis comparing the geographic distribution of community cancer center providers to CRC prevalence rates among Medicare beneficiaries
Abstract Colorectal cancer (CRC) has the fourth highest death rate among patients diagnosed with cancer in the United States. More than half of incidence occurs in the Medicare-eligible population; Data shows higher rates of incidence of CRC among the Black population compared to other races/ethnicities. More than 80% of cancer care is delivered in community outpatient settings. The Association of Community Cancer Centers (ACCC), a member community of more than 28,000 multidisciplinary practitioners and 2,100 cancer programs and practices nationwide, estimates that its members treat about 65% of the nation's cancer patients. Data have shown that a lack of access to cancer treatment may contribute to inferior clinical outcomes among certain demographic populations. Understanding proximity to community cancer care is critical to improve outcomes and reduce disparities. Research question: What is the geographic relationship between ACCC members relative to Medicare Fee-for-Service (MCR-FFS) beneficiaries living with CRC? Methods The authors examined CRC claims in MCR-FFS relative to ACCC member locations, using claims data from the 2019 Medicare Beneficiary Summary (MBSF) file for CRC. Records included were for beneficiaries with “at least 1 inpatient/SNF claim or 2 HOP/carrier claims with DX codes” for any diagnosis of CRC, irrespective of stage (“qualified CRC claims”). Only zip codes showing 11 or greater beneficiaries with qualified CRC claims (“eligible zip codes”) were included due to data suppression. The ACCC member database was queried to obtain geocoded member locations. The Colorectal Cancer Index™ was used to map the data from both sources. Prevalence estimates are considered point prevalence: a numerator shows a count of beneficiaries with qualified CRC claims over a denominator of all beneficiaries in the selected geography, expressed as a percentage. CMS standard demographic definitions are used for race/ethnicity: Asian, Black, Hispanic, North American Native, White, and Other. Preliminary Findings A total of 382,295 MCR-FFS beneficiaries with CRC were identified, residing in 10,280 zip codes; 56,062 people of color (POC) reside in 1,247 eligible zip codes.A total of 663 ACCC member providers were identified. The CRC prevalence (mean average) across the 10,280 eligible zip codes was 0.98%; Prevalence in 5,826 zip codes exceeded 0.98%. The CRC prevalence (mean average) across the 1,247 POC-eligible zip codes was 0.76%; Prevalence in 941 eligible zip codes exceeded 0.76%. ACCC members are located in 663 of all 10,280 eligible zip codes (6.4%) 251 ACCC members serve the 5,826 high prevalence eligible zip codes (4.3%). 72 ACCC members are located in the 941 eligible zip codes of high prevalence among CRC patients of color (7.5%) Conclusions Regions of high CRC prevalence appear to be potentially underserved by cancer programs in terms of direct geographic proximity. Additional analysis is ongoing to understand the significance of these findings as they relate to navigating MCR-FFS beneficiaries to timely diagnosis and care. Citation Format: Michael DeSalvo Solarte, Beatriz De Lucas Sacristan, Leigh Boehmer, Lola Fashoyin-Aje, Kristin Hobbs. An analysis comparing the geographic distribution of community cancer center providers to CRC prevalence rates among Medicare beneficiaries [abstract]. In: Proceedings of the 15th AACR Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; 2022 Sep 16-19; Philadelphia, PA. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2022;31(1 Suppl):Abstract nr A014.
Read morePreliminary findings from a consensus building process to update financial advocacy services guidelines.
171 Background: In 2018, the Association of Community Cancer Centers (ACCC) developed the Financial Advocacy Services Guidelines to support cancer programs and practices with proactively addressing patients’ financial concerns along the cancer care continuum. Since then, research on financial hardship has expanded and the field of financial advocacy has continued to grow and evolve, necessitating new guidelines. Methods: To assess the current landscape of cancer financial advocacy interventions, ACCC conducted a literature scan of articles published between 2016 and 2021 using key words including financial advocacy, navigation, toxicity, oncology, and cancer. In May 2022, ACCC convened a multidisciplinary group of 49 national experts to begin developing new guidelines through a consensus-based Delphi process. To identify changes and additions to the 2018 guidelines, the panel completed a brief qualitative survey that asked which services are most important to include as a part of financial advocacy programs and necessary resources for effective delivery. Responses were compiled in a document and grouped by similarity using a rapid qualitative analysis approach. Results: The literature scan yielded a total of 55 articles. Several key recommendations emerged including the need to further integrate financial advocacy into care planning services, more training across team members to address financial toxicity, and ensuring services are accessible and equitable. Additional areas for research were ways to leverage technology to enhance services, when and how to screen for financial distress, and the development of care models. From the survey, responses clustered in the following domains and sub-domains: Financial Advocacy Services and Functions (Benefits Verification, Pre-Authorization, & Insurance Optimization; Financial Distress Screening; Patient Communication & Education; Financial Assistance); Program Management Functions (Staffing/Roles & Responsibilities, Staff Training, Infrastructure & Information Exchange, Monitoring & Evaluation); and Stakeholder Management Functions. Conclusions: Early input from the panel illuminated numerous areas for defining new guidelines to increase comprehensiveness, incorporate an explicit focus on health equity, and begin to tease out minimal and optimal services and program components and structure. The information from the literature scan and survey are being used by ACCC and a guidelines task force of field experts to draft new financial advocacy services guidelines, which will then go through at least two rounds of rating by the Delphi panel in order to find areas of consensus. ACCC will also hold a series of roundtables with patient advocacy, commercial, and pharmaceutical stakeholders to allow an opportunity to comment on the guidelines as well. The finalized guidelines are expected to be released before June 2023.
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