Goal 2: Facilitate Equitable Access to Cancer Screening

Inadequate access to healthcare services due to geographic, financial, or logistical challenges is a commonly cited barrier to cancer screening. (1,2,3,4) Fear of judgment, apprehension about potential diagnoses, cultural factors, lack of trust in healthcare systems, and structural racism also can deter people from seeking or receiving recommended care. (2,3,5) These barriers contribute to the lower rates of cancer screening initiation and recommended follow-up observed among many populations in the United States; people without a usual source of care or health insurance, individuals with low income or low educational achievement, recent immigrants, individuals living in rural or remote areas, and members of some racial/ethnic minority groups are among those who experience disparities in cancer screening and follow-up care. (6,7,8)

Factors that undermine equity and access must be addressed to optimize cancer screening in every community in the United States. The prevalence and impact of these barriers vary among communities, and solutions should be tailored to each situation. Supportive local, state, and federal policies are needed to ensure that effective strategies can be implemented.

Ensuring Cost is Not a Barrier to Screening

Access to cancer screening, follow-up testing, and treatment should not depend on a patient’s ability to pay. Lower rates of cancer screening and recommended follow-up care have been linked to lack of health insurance and underinsurance. The Panel believes that all people in the United States should have access to high-quality health insurance, and safety net programs must be created to ensure that out-of-pocket costs do not deter people from receiving recommended care, regardless of insurance status. Provisions of the Affordable Care Act—including the expansion of Medicaid in many states and elimination of cost-sharing for preventive services for private insurance plans, Medicare, and many people covered by Medicaid—have increased access to health insurance and reduced financial barriers to cancer screening. There is evidence that these changes are helping to narrow cancer-related disparities experienced by some sociodemographic subpopulations.

Despite widespread coverage without cost-sharing for cancer screening tests, cost may continue to pose a barrier for some patients. In some states, individuals with traditional Medicaid coverage may have a copay for preventive services such as cancer screening. In addition, patients often must pay out of pocket for follow-up testing, including diagnostic services and additional surveillance. This can be particularly problematic for colorectal cancer screening. Patients initially screened for colorectal cancer using a stool-based test must undergo colonoscopy if they receive an abnormal result. While the cost of the stool-based test would be fully covered, patients often must pay a deductible or copay for the subsequent colonoscopy, despite the fact that the colonoscopy is needed to complete the screening process. Out-of-pocket costs or perceived costs also have been cited as barriers to receipt of recommended follow-up for other cancer types. The Panel supports efforts—including legislation—to ensure that cost-sharing for cancer screening or additional surveillance and recommended diagnostic services after an abnormal cancer screening test does not deter patients from receiving these services. In this regard, the Panel applauds Congress for passing the Removing Barriers to Colorectal Cancer Screening Act in December 2020, eliminating cost-sharing for Medicare patients if polyps are identified and removed during a screening colonoscopy.

Programs such as the Centers for Disease Control and Prevention (CDC) National Breast and Cervical Cancer Early Detection Program and Colorectal Cancer Control Program have helped make cancer screening and follow-up care more accessible for low-income people. The National Breast and Cervical Cancer Early Detection Program serves more than 300,000 women a year through direct provision of Pap tests, human papillomavirus (HPV) tests, mammograms, magnetic resonance imaging, clinical breast exams, and diagnostic services. The Colorectal Cancer Control Program partners with healthcare systems that serve high-need populations to help implement evidence-based interventions to increase colorectal cancer screening; the program currently works with state health departments, universities, tribal organizations, and other organizations in 20 states. CDC should continue to evaluate these programs and consider the potential need for similar programs to address other cancers, such as lung cancer. Resources should be provided to ensure that these programs meet the needs of their target populations.

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Policy makers, healthcare systems, health plans, and communities must work together to identify and address other barriers to make it as easy as possible for people to receive recommended cancer screenings and follow-up care after an abnormal screening test result. Some solutions may be relatively straightforward. For example, extended and flexible appointment hours may help reach people whose jobs or caregiving responsibilities make it difficult to attend appointments during traditional hours. More screening locations (including mobile units), transportation assistance, and telehealth (see Telehealth) may help those who live long distances from or have difficulty traveling to health centers. The Panel has determined that community-oriented outreach and engagement and increased use of self-sampling also will improve access to screening and follow-up care, particularly for populations less likely to be up to date for cancer screening.

Telehealth

The challenging circumstances of the COVID-19 pandemic have demonstrated the feasibility and benefits of telehealth for a variety of health services. Telehealth can be used to support some aspects of cancer screening, such as consultation before colonoscopy, shared decision-making for lung cancer screening, facilitation of self-sampling for colorectal or cervical cancer screening, risk assessment, genetic counseling, and discussion of results and next steps. The Panel supports the calls by the National Academies of Sciences, Engineering, and Medicine and numerous medical societies and professional organizations to extend coverage for telehealth services, including audio-only services, which make telehealth more accessible to those without broadband access.

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Recommendation 2.1: Provide and sustainably fund community-oriented outreach and support services to promote appropriate screening and follow-up care.

Accessing and navigating healthcare systems can be daunting, particularly for populations that are medically underserved. Community health workers (CHWs)—sometimes called community health navigators, promotoras de salud, or other names—serve as liaisons between communities and healthcare systems or services with the underlying goals of improving access and promoting equity. CHWs do not provide clinical care and generally do not hold another professional license. The defining feature of CHWs is their invaluable expertise on the culture and life experiences of the populations they serve. Although they perform some overlapping roles, CHWs are distinct from nurse navigators, social workers, medical assistants, or patient navigators that hold a professional degree. (9) Unlike CHWs, many nurse or patient navigators work primarily within healthcare systems and focus on coordination of care for patients with complex needs (e.g., active cancer treatment, organ transplantation).

Figure 4: CHW Roles and Activities

Their connection to their communities makes CHWs uniquely poised to understand and help address the diverse barriers facing populations with low cancer screening rates. The Community Preventive Services Task Force found strong evidence that interventions engaging CHWs are effective and cost-effective for increasing screening for breast, cervical, and colorectal cancers (programs for colonoscopy were actually found to be cost saving). (10,11) A body of evidence also is emerging for lung cancer screening. (12) CHWs can work both within communities and within healthcare systems. They can perform a range of activities to promote cancer screening and receipt of appropriate follow-up care (Figure 4) including: (9)

• Cultivate relationships between healthcare systems and community organizations.
• Interact with people in trusted community settings.
• Encourage people to establish relationships with healthcare providers.
• Provide culturally appropriate information to increase awareness and understanding of cancer risk and screening.
• Promote appropriate cancer screening.
• Identify and reach out to established patients who are due or overdue for cancer screening.
• Identify individual barriers to cancer screening and follow-up care (may include basic needs such as food and housing).
• Facilitate access to services and resources (e.g., financial, transportation, dependent care) needed to overcome barriers to care.
• Provide informal counseling and social support.
• Assist with care coordination.
• Advocate within healthcare systems for individual and community needs.

Healthcare systems and health plans should establish CHW programs to reach the people in the communities they serve (see CHWs: Connecting People to Care) and ensure that those eligible receive appropriate and timely cancer screening and follow-up care. Regardless of whether they are working in the community or the clinic, CHWs must be trusted members of the community and have a strong understanding of the social, economic, and cultural issues that affect people’s desire and ability to obtain healthcare. CHWs should be treated as respected members of healthcare teams and compensated in a timely and fair manner. Healthcare systems should solicit input from CHWs on ways to better reach and serve their target populations. CHWs should have multiple modes of communication available (e.g., in-person, telephone/telehealth, text message) to facilitate frequent and convenient interactions with community members.

To date, most CHW programs have been funded through short-term grants or contracts, which creates instability that undermines cultivation of meaningful relationships with communities, community members, and healthcare systems. Healthcare systems and health plans should establish sustainable funding for CHW programs to ensure they meet their full potential. No single funding strategy will be effective in every situation, and a single program may use multiple funding sources. Programs must be tailored to community needs and resources, as well as to state and local policies and regulations. CHW programs may be particularly useful in settings that serve low-resource populations, including Federally Qualified Health Centers. 13,14) In all settings, CHW services should be made available regardless of a person’s insurance status. Options for consideration include: (15,16,17)

• Healthcare system operational funds—Healthcare systems or providers can use operational funds to finance CHWs in the absence of direct reimbursement or provide supplemental funding based on the expectation that CHW programs will pay for themselves. For example, CHWs can help increase utilization of preventive and primary care services and reduce the volume of uncompensated care through better disease detection and management as well as linking patients with health insurance and other financial resources.
• Health plan funds—Some states have incorporated CHWs into their Medicaid Managed Care Organization contracts for specific services. Health plans also may fund CHWs through administrative or quality improvement funds.
• Public health organizations—Many local health departments use CHWs to engage their communities. In general, these CHWs have been funded through disease-specific grants or initiatives, which undermines stability. State health departments could establish long-term funding to allow local health departments to build and maintain relationships with community organizations and CHWs.
• Reimbursement for CHW services—Fee-for-service is the dominant reimbursement model in the United States, although an increasing number of providers are participating in alternative payment models that tie reimbursement to quality and value. Within the fee-for-service realm, a 2014 Centers for Medicare & Medicaid Services (CMS) rule change opened the door to Medicaid reimbursement for preventive services provided by CHWs as long as those services are recommended by a physician or other licensed practitioner. (18) Multiple states are pursuing one or more mechanisms to utilize this funding route; however, the challenges and limitations of CHW reimbursement within the fee-for-service model—including the need to clearly define eligible patients and services and substantial administrative burden—make it unlikely that this model will provide sufficient coverage for CHW programs. The role of CHWs as community liaisons capable of addressing medical and sociocultural barriers is more suited to emerging value-based payment models that incentivize team-based care.

Healthcare systems and health plans should provide training directly or through partnerships with other organizations to ensure that CHWs have the knowledge and skills needed to do their jobs. CHW training should impart a working knowledge of cancer screening—including different test options and eligibility criteria—as well information about institutional systems and both institutional and community resources available to help overcome common barriers. Training also should enhance communication, teaching, counseling, advocacy, and organizational skills. Programs should check the requirements for CHW training and certification in their states; many states have or are pursuing legislation related to CHWs. (19) Importantly, training should be affordable and accessible for potential CHWs.

CHWs: Connecting People to Care

People without a usual source of medical care are among the least likely to be up to date on recommended cancer screenings. The Panel supports the recent recommendation made by the National Academies of Sciences, Engineering, and Medicine that payors assign a primary care provider for enrollees who do not declare a usual source of primary care and use this assignment for payment and accountability measures. CHWs could help health plans and healthcare systems cultivate relationships with populations who historically have been difficult to reach and retain.

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Recommendation 2.2: Increase access to self-sampling for cancer screening.

There are tools for two cancers that allow screening to be done using self-collected samples (see Stool-Based Tests for Colorectal Cancer Screening and HPV Self-Sampling for Cervical Cancer Screening). Currently, stool-based tests are integrated into U.S. colorectal cancer screening guidelines. Human papillomavirus (HPV) self-sampling is utilized in other countries and has potential to expand the reach of cervical cancer screening in the United States; however, it has not yet been approved by the U.S. Food and Drug Administration (FDA). The Panel supports expansion of both self-sampling approaches.

Self-sampling can increase access to cancer screening for people who:

• Live long distances from medical facilities that provide in-office screening
• Have difficulty attending appointments due to transportation challenges or work/caregiving responsibilities
• Are uncomfortable in medical settings or with healthcare providers
• Prefer to avoid the colon-cleansing prep and invasive nature of colonoscopy (for colorectal cancer)
• Prefer to avoid pelvic exams (for cervical cancer—e.g., due to history of sexual trauma or cultural/religious preference).

Stool-based tests for colorectal cancer and HPV self-sampling both can be done in the clinic setting or at home. Use of these sample collection tools in the clinic allows cancer screening to be done in the offices of providers who do not perform colonoscopies or pelvic exams. This may help improve access to screening for people living in rural or remote areas with limited access to specialists who often perform these services. At-home sample collection also provides an option for those who cannot or prefer not to be screened in person. The value of stool-based tests has been reinforced during the COVID-19 pandemic. Self-sampling provided a way to continue colorectal cancer screening when people were unable or unwilling to visit clinics in-person. Stool-based tests also could be used to triage higher-risk patients to colonoscopy, allowing optimal use of in-demand resources and limiting in-person visits to those patients most likely to benefit. (20,21) For both stool-based tests and HPV self-sampling, patients who receive an abnormal result need to receive follow-up care at a healthcare facility (e.g., colonoscopy after abnormal stool-based test result). Screening, including screening with self-collected samples, is effective only if those screened receive appropriate and timely follow-up care.

There is evidence that self-sampling can increase rates of screening. Several studies—including in Federally Qualified Health Centers, which often have lower-than-average colorectal cancer screening rates—have linked active distribution of stool-based tests to increased completion of colorectal cancer screening. (22,23,24,25) A meta-analysis from studies conducted in several countries found that offering the option of HPV self-sampling can increase cervical cancer screening uptake by about twofold. (26,27)

Stool-based testing is underused in the United States. Stool-based tests—including fecal immunochemical test (FIT) and FIT-DNA—are available for use in the United States and included in all major colorectal cancer screening guidelines. (28,29,30) Although stool-based tests are effective, cost-effective, and associated with higher screening uptake, (25) they account for only a small proportion of colorectal cancer screening in the United States. (31) This is likely in part due to the fact that many providers consider colonoscopy to be superior to stool-based tests despite no evidence to support this. (31,32) Healthcare providers should promote stool-based tests as an option for colorectal cancer screening, particularly for people who are hesitant or unable to undergo colonoscopy. In addition to offering colonoscopy, healthcare systems and health plans should distribute stool-based tests to individuals due for colorectal cancer screening as part of a systematic, organized effort to increase appropriate screening.

Research supports HPV self-sampling in the United States. HPV self-sampling has been adopted as part of cervical cancer screening programs in other countries (33,34) and has shown promise for reaching individuals who do not participate in regular screening. (35) Research has found that U.S. women—including women underscreened for cervical cancer—consider self-sampling to be an acceptable, or even preferable, option for cervical cancer screening. (36) Given that more than half of new cervical cancer cases in the United States are among women who have never been screened or are infrequently screened, there is a critical need for new strategies to reach this population. Lack of regulatory approval of HPV self-sampling in the United States is a critical barrier to its implementation in cervical cancer screening that needs to be addressed. The National Cancer Institute’s “Last Mile” Initiative—a public-private partnership that is conducting a clinical trial to validate HPV testing with self-collected samples for cervical cancer screening in the United States—will be coordinated with the regulatory process and help drive progress in this area. (37) The Panel encourages HPV test manufacturers to participate in validation efforts and pursue regulatory approval for HPV self-sampling strategies. The FDA should prioritize review of the evidence supporting HPV self-sampling to ensure that it is available to women in the United States as soon as possible. If HPV self-sampling is approved by the FDA, U.S. cervical cancer screening programs, including state and federal programs, should use HPV self-sampling to extend the reach of cervical cancer screening.

Self-sampling has potential to extend the benefits of cancer screening, particularly to those who cannot or do not want to participate in traditional screening. While self-sampling empowers patients, it should not be viewed as a replacement for regular provider visits. It is essential that individuals performing self-sampling for both stool-based and HPV tests are connected with a healthcare provider or system that will answer questions, provide results, and be accountable for facilitating next steps in the case of an abnormal result (e.g., diagnostic studies, treatment, surveillance, increased screening frequency). As culturally competent community liaisons, CHWs should be involved in this process, particularly for individuals who do not have an established relationship with a healthcare provider. CHWs can help develop culturally and linguistically appropriate instructions, provide support for patients with questions or concerns, and facilitate access to follow-up care in the case of abnormal results.

Stool-Based Tests for Colorectal Cancer Screening

Stool-based tests provide a noninvasive way to screen for colorectal cancer or precancerous polyps. The fecal immunochemical test (FIT) and guaiac fecal occult blood test (gFOBT) detect traces of blood in the feces. The FIT-DNA test (or multitargeted stool DNA test) checks both for blood and DNA mutations linked to abnormal cells. All major U.S. colorectal cancer screening guidelines include stool-based tests as an effective screening option, although stool-based tests must be done more frequently than colonoscopy. If a stool-based test yields an abnormal result, a follow-up colonoscopy must be done in a timely manner to complete the screening process and reduce colorectal cancer incidence and mortality.

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HPV Self-Sampling for Cervical Cancer Screening

HPV testing is more accurate and reliable than cytology-based testing (Pap smears) for cervical cancer screening, leading many guideline makers to recommend primary HPV testing alone or HPV testing in combination with cytology. In the United States, samples for HPV testing currently are collected by a clinician during a pelvic exam. Research has shown that the accuracy of HPV tests done with self-collected samples is similar in most cases to those done with samples collected by a clinician; however, self-sampling for HPV testing has not yet been approved for use in the United States.

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Sources

Ensuring Cost Is Not a Barrier to Screening Sources: Durham DD, et al. Cancer Epidemiol Biomarkers Prev. 2016;25(11):1474-82. [PubMed Abstract]. Sabatino SA, et al. MMWR Morb Mortal Wkly Rep. 2021;70(2):29-35. [PubMed Abstract]. Zhao J, et al. CA Cancer J Clin. 2020;70(3):165-81. [PubMed Abstract]. Rosso R. U.S. health care coverage and spending. Washington (DC): Congressional Research Service; 2021 Jan 25. [Available Online]. Gan T, et al. J Am Coll Surg. 2019;228(4):342-53 e1. [PubMed Abstract]. Lyu W, et al. Med Care. 2019;57(3):202-7. [PubMed Abstract]. Biddell CB, et al. J Womens Health. 2021;30(9):1243-52. [PubMed Abstract]. Tejeda S, et al. J Womens Health. 2013;22(6):507-17. [PubMed Abstract]. 116th Congress (2019-2020). Removing Barriers to Colorectal Cancer Screening Act of 2020, H.R.1570. (2020 Dec 10). [Available Online]. Centers for Disease Control and Prevention. National Breast and Cervical Cancer Early Detection Program (NBCCEDP) screening program summaries: national aggregate, five-year summary: July 2015 to June 2020 [Internet]. Atlanta (GA): CDC; [updated 2021 Sep 21; cited 2021 Sep 30]. [Available Online]. Centers for Disease Control and Prevention. Colorectal Cancer Control Program (CRCCP) [Internet]. Atlanta (GA): CDC; [updated 2021 Feb 3; cited 2021 Oct 1]. [Available Online]

Telehealth Sources: National Academies of Sciences, Engineering, and Medicine. Implementing high-quality primary care: rebuilding the foundation of health care. McCauley L, Phillips RL Jr, Meisnere M, Robinson SK, editors. Washington (DC): The National Academies Press; 2021. [Available Online]. American Society of Clinical Oncology. ASCO interim policy statement: telemedicine in cancer care. Alexandria (VA): ASCO; 2020 Jul 23. [Available Online]. Adirondacks ACO, et al. Letter to: The Honorable Mitch McConnell (Majority Leader, United States Senate), The Honorable Nancy Pelosi (Speaker, United States House of Representatives), The Honorable Charles Schumer (Minority Leader, United States Senate), The Honorable Kevin McCarthy (Minority Leader, United States House of Representatives). 2020 Jun 29. [Available Online]

CHWs: Connecting People to Care Sources: National Academies of Sciences, Engineering, and Medicine. Implementing high-quality primary care: rebuilding the foundation of health care. McCauley L, Phillips RL Jr, Meisnere M, Robinson SK, editors. Washington (DC): The National Academies Press; 2021. [Available Online]

Stool-Based Tests for Colorectal Cancer Screening Sources: San Miguel Y, et al. Gastroenterology. 2021;160(6):1997-2005 e3. [PubMed Abstract]

HPV Self-Sampling for Cervical Cancer Screening Sources: Gupta S, et al. Front Public Health. 2018;6:77. [PubMed Abstract]. Arbyn M, et al. BMJ. 2018;363:k4823. [PubMed Abstract]