AN EXAMINATION OF THE BARRIERS TO BREAST CANCER CARE IN CALIFORNIA.
In 2017, an estimated 27,980 women will be diagnosed with breast cancer in California, and approximately 4,400 will die from the disease. (1) Research has documented disparities in breast cancer care and outcomes by socioeconomic status and race/ethnicity. (2) Although the factors underlying disparities are complex and multi-focal, unequal access to high-quality breast cancer treatment is likely a key cause of disparities in breast cancer outcomes. (3,4) Despite established clinical treatment guidelines for breast cancer, there remains variation in care by insurance status and where care is received. (12-15) For instance, patients at high-volume hospitals are more likely to receive a cancer diagnosis before their first surgery, have negative surgical margins, and receive appropriate loco-regional treatment compared to women who present to low- and medium-volume hospitals. (15) There are also differences in treatment by type of health insurance, as shown in a study that found the proportion of patients receiving breast conserving surgery varied significantly for private, uninsured and Medicaid enrollees (52%, 48%, and 45%, respectively). (14)
The Affordable Care Act (ACA) has successfully expanded access to health insurance and breast cancer care. However, despite the ACA, numerous population subgroups remain uninsured, and many others may lack adequate coverage for treatment and management of their breast cancer. (10,11) Improving insurance status appears to improve cancer specific mortality, however the degree of benefit may vary by race, whereby black cancer patients do not achieve the same degree of benefit of health insurance as do their white counterparts, (16) and health insurance may not be able to completely eliminate the differences in cancer care and outcomes that are due to social determinants of health as seen in disadvantaged communities. (17) Challenges to cancer care remain even for the insured. Among those insured by their employers, there may be significant barriers to cancer care as health insurance premiums are increasing; for example, in California, health plan premiums have increased by 189% between 2002 and 2014, and 28% of large California firms reduced health benefits or increased cost sharing in 2014. (10)
Prior research examining barriers to care have identified barriers that are structural, including limited access to services due to geographic location and/or availability of providers who accept public insurance, transportation needs, insufficient or undertrained workforce, receipt of care in low volume or low quality hospitals and centers, sociocultural (e.g., misconceptions, stigma, language barriers, discrimination, religious beliefs), personal (e.g., fear of a cancer diagnosis, low health literacy, competing family and work obligations) and financial (e.g., lack of insurance, large out-of-pocket payment, indirect costs of transportation, childcare, and lost wages). (2,5-9) The aim of this study was to provide a synthesized assessment of the significant barriers and challenges to accessing breast cancer care in the diverse state of California following the health insurance coverage expansion under the ACA.
We conducted a comprehensive assessment through the completion of key tasks: (1) a synthesis of the peer reviewed literature, news and social media, reports and policy briefs, (2) a series of key informant/stakeholder interviews, and an analysis of legislative policies addressing cancer care barriers. Although many barriers are shared across insurance types, where possible, we provided insight on barriers unique to the insurance status of women, specifically for the uninsured, those covered by Medi-Cal, and those covered by commercial insurance. We anticipate that these project results can be used to guide efforts of policy-makers to improve timely access to breast cancer care among all women in California.
A conceptual framework was developed to illustrate and organize the different types of barriers that might limit access to breast cancer diagnostic and treatment services. Figure 1 illustrates this conceptual framework, juxtaposing the breast cancer care continuum from prevention/screening to treatment initiation and post-treatment care with the barriers and delays that might limit access to breast cancer diagnostic and treatment services at the individual, provider, and system levels. While barriers may occur anywhere along this continuum of breast cancer care that spans from prevention to rehabilitation, our review focuses on the care that occurs from diagnosis of the cancer to treatment. We thus exclude preventive services, early-detection/screening and post-treatment and rehabilitation in this report.
Patient level characteristics, such as race/ethnicity, age, and comorbidities influence not only what we call patient-level barriers, such as language, financial status, access to transportation, family support, but likely also impact the provider/practice and health system barriers. For example, patient's ethnicity is associated with provider communication style (18) and an individual's residential neighborhood is associated with quality of care. (19) Barriers may contribute to delays between each step along the breast cancer care continuum, complete lack of access to a service, or a premature end to treatment. While some patient level characteristics are unchangeable (e.g., demographics), policies and programs can be used to overcome many barriers. Thus, our discussions below focus less on research documenting disparities, and more on research and observations identifying modifiable barriers that can be used to inform the development of policies and programs to improve access to breast cancer care in California.
Aim 1: A Narrative Synthesis of the Barriers to Breast Cancer Care
We conducted a narrative synthesis review of the recent evidence (January 2013--December 2015) on the barriers to breast cancer care in the U.S. and California, with a special attention on how the recent implementation of the ACA may have affected these barriers. As part of our review, we included both the peer-reviewed literature as well as non-peer reviewed sources. Utilizing the methodology used to generate reviews of medical effectiveness by the California Health Benefits Review Program (http://chbrp.ucop.edu), a literature search was performed to retrieve publications that described any aspect of barriers to breast cancer care. The conceptual framework (Figure 1) helped identify search terms (see Appendix A for list of terms). The literature search was limited to articles published in English from 2013-2015. The following databases that index peer-reviewed journals were searched: PubMed (MEDLINE), the Cochrane Library, and Web of Science. The list below includes all search terms used for the review--we used search strategies that included MeSH terms, which generate specific and very targeted responses, along with keyword searches that cast a wider net and can capture the most recent papers which MeSH searches may miss. All results were filtered to include only papers in English with human subjects. Because there were only a handful of California-based studies, U.S. based studies were also included in the literature pull. We also reviewed the non-peer reviewed material for our specified time frame retrieved from LexisNexis Academic database, Google News Archives, and Google (reports and news sources).
The titles/abstracts of each citation retrieved by the literature searches were screened to determine applicability for inclusion in the review. A total of 710 papers were retrieved in this search; 99 of these were studies/papers based on California data. We then reviewed and sorted the list to exclude papers on prevention, early-detection, and screening. With examination of the titles and abstracts, the list of papers was then further narrowed down to only papers that made reference to barriers to care. A total of 35 papers (of which 15 California-based) were identified and full text articles were retrieved. Over 100 articles were retrieved in the non-peer reviewed search with mention of health care barriers post-ACA. However, the vast majority of these articles were duplicate reports of findings that had been published in peer reviewed journals. The most relevant non-peer reviewed sources on potential health care barriers in California are reports from the California Health Care Foundation, which have been used throughout this report to provide context and insight regarding the current landscape of healthcare in California and its potential influence on breast cancer care.
We also examined public access datasets relevant to California to see if any information on barriers to care could be gathered from these sources: Behavioral Risk Factor Surveillance System (BRFSS), the Health Information National Trends Survey, Medical Expenditures Panel Survey (MEPS) Cancer Survivorship module, California Cancer Registry, SEER Registry, California Health Interview Survey (CHIS). None of these datasets included publically accessible data on barriers to care specific to breast cancer and/or California.
Aim 2: Key Informant Interviews to Understand Patient Barriers to Care
An important aspect of this project is to gain an understanding of barriers to breast cancer care in California from the perspective of the patient. In an effort to represent a maximum amount of voices, the research team identified organizations that interface directly with breast cancer patients and would be in a position to hear feedback from patients on their perceptions of the continuum of care. These groups included breast health educators, on-site clinic workers, patient navigators, and individuals involved with support groups. In order to recruit participants for key informant interviews, we invited organizations that have previously partnered with the UCLA Center for Health Policy Research, the UCLA Center for Cancer Prevention and Control Research, and the California Pan Ethnic Health Network, resulting in the completion of 12 key informant interviews. Semi-structured interviews were conducted by phone from January 3-March 18, 2016. The final protocol for stakeholder interviews can be found in Appendix B.
The semi-structured interviews were designed to assess barriers to breast cancer care across the continuum of care. Respondents were also asked to describe how the experience of obtaining care may differ based on insurance status--uninsured, underinsured, and publicly or privately insured. Interview transcripts were initially coded in two rounds, by two separate researchers, who then consolidated codes and came to agreement on analysis (see Appendix B for list of codes).
Aim 3: Examination of Social Media to Capture Discussions on Barriers to Breast Cancer Care
Social media--for example, Twitter and Facebook--are a major repository of information to examine campaigns by organizations and to capture the conversations/discussions among members of the public that occur in these platforms. A Pew Research Report on the demographics of social networking platforms found that about 23% of adults online used Twitter in 2014 (up from 18% in 2013) and approximately 71% of adults online use Facebook, and the usage among older adults is increasing. (20)
In order to conduct a social media analysis, identifying particular hashtags or keywords are crucial as they are the means to identify data that speak to a particular problem. For this purpose, we harvested hashtags and names of breast cancer patient organizations with a presence on social media from our key informant interviews and the gray-literature review. Very few participants were aware of websites, chat rooms or public posting boards available for breast cancer patients to seek web-based support from other breast cancer patients and survivors.
We focused our efforts on examining discussions using the hashtags #breastcancer and #barriers on Twitter (other search terms are detailed in Appendix C). Other web platforms were also examined to pull any discussions regarding breast cancer barriers to care; these include, Tumblr, Wordpress, Blogger, reddit, and message boards and patient forums and blogs, patient stories on breast cancer websites (Susan G. Komen, American Cancer Society, Pink Ribbon and Breast Cancer Action) for discussion and stories related to breast cancer barriers and for shared perspectives on the patient experience.
Our examination of social media was challenged to find high-volume discussions on breast cancer barriers on Twitter and Facebook (publicly available posts). This is not to say that discussions are not occurring, as it is possible that these conversations are occurring privately in Facebook groups or other non-publicly accessible platforms and chat sites. While searching via the hashtags #breastcancer and #barriers via Twitter, a public platform, generated very few relevant results, we identified a number of Twitter chats hosted by an organization called Living Beyond Breast Cancer (LBBC; Twitter @Living-BeyondBC), which aims to connect people with breast cancer information and community support. Throughout 2014 and 2015, @LivingBeyondBC has hosted a number of chats for patients that deal with issues related to breast cancer treatment decision making, coping with high costs, financial impacts of breast cancer, and follow-up care. In general, there is a large volume of posts on Twitter (namely tweeting and re-tweeting posts related to news articles in major sources, such as the New York Times) on larger health system and health trend topics--not specifically related to breast cancer, rather to health care in general--such as those related to the high cost of drugs, high co-pays, high deductible plans, narrow networks, and the Affordable Care Act.
In the review below, we summarize our findings from Aims 1 and 3 together due to the relatively low volume of material from the social media scan and because there was a good deal of alignment between the gray literature and social media, namely because much of the discussion occurring on platforms such as Twitter and Facebook are related to gray literature news articles. Using the findings from the three Aims described above, the appearance of keywords related to the barrier addressed were documented and then tallied. The predominant keywords that emerged in the narrative synthesis, key informant interviews, and the scan of social media were then compared to identify major themes.
As intended, each Aim generated findings on differing yet interlinked sources of barriers to breast cancer care and disparities in treatment (Table 1). The peer-reviewed literature was largely focused on variations in receiving timely and high quality care; there was also a body of literature that focused on the role of patient navigation in addressing patient level barriers to care. Non-peer reviewed sources, however, were largely focused on the system-level barriers affecting access to treatment, such as high cost of treatment and narrow provider networks. Our scan of the social media suggests many of the discussions online are around system-level barriers as well. Key informant interviews highlighted patient-level barriers and the ways in which system-level barriers compounded patient-level challenges. The findings across the aims with regard to barriers in receipt of timely, high quality breast cancer care in California supported the following high-level conclusions:
* The system of providers, insurance, and support services for women with breast cancer are in silos, often with little helpful interaction between these areas. One respondent expressed frustration in the lack of coordination: "In Los Angeles County, perhaps even in the state, we just had a spider web of different programs, and that spider web left plenty of room for people to fall through the cracks." The lack of coordination has also been cited as a barrier to effective breast cancer care by providers in California (21) and is considered one of the key challenges in cancer care. (22)
* Barriers cross insurance lines. No single insurance status--uninsured, underinsured, and publicly or privately insured--exempts women with breast cancer from the possibility of facing barriers identified by this study. Among women with breast cancer who are insured, barriers are often patient-centered. Among women without insurance, system-level barriers are particularly salient. In this context, the following Themes were identified as the most significant for women with breast cancer in California: (1) Health System Barriers and Navigation, (2) Insurance, (3) Cost, (4) Individual and Cultural Characteristics, and (5) Language.
Health System/ Navigation
The Fragmented Health System
Data collected across all Aims emphasized the fragmentation of the health system as a major barrier to the receipt of timely, high quality care. The lack of connections between providers, facilities, and payment systems add to the challenges of receiving cancer care that is already complex, involving treatment and support from multiple providers and services. For example, one respondent noted a challenge at her facility dealt with prescribing radiation. Because the facility had to refer them elsewhere for treatment some patients experienced delays in care. Services that are integrated and co-located can lead to improved timeliness and completion of care.
Sources from all Aims highlighted the importance of patient navigation as a key intervention to counter the challenges of system fragmentation. Navigation helps patients overcome barriers to cancer care through coordination and support. Patient navigation emerged as a significant theme in this study, both as something that was desperately needed when absent, and extremely helpful when present (which was less often the case). A seminal article on patient navigation by Wells et al. (2008) provides an ideal frame for considering our results; in their paper the following five characteristics are used to describe patient navigation for cancer: 1) it focuses on overcoming individual patient level barriers to accessing care; 2) it reduces delays in obtaining care; 3) is provided to patients for a defined episode of cancer care; 4) focuses on a defined set of health services relevant to that episode of care; and 5) has a definitive endpoint when provided services are complete. (23) Patient navigation is most commonly offered by health services providers (hospitals or physician practices), and less often by community organizations and health insurance plans.
Patient Navigation Facilitates Access to Care
A large body of scientific research has documented the benefits of patient navigation for patient satisfaction and clinical outcomes. (8,24-31) Navigation also emerged as a dominant theme in key informant interviews. One respondent explained: "I do believe that navigation is a huge asset to the medical field, because not only are we assisting them to getting to the right path, there are some patients who, for instance, don't understand their diagnosis... what the next step is... .So there are times that the patient feels lost, scared, and they might not get treatment and not come back for it... ."
Many interview respondents had direct experiences demonstrating the need for navigators. More than one acknowledged that their organization was not explicitly tasked with navigation services, but often ended up playing the role. Screening and community outreach programs in particular--because they are a known entity--become de facto resource centers and, in some cases, provide navigation because women don't know where else to go. But their services are limited by their indirect link to any one health care system. Some programs have expanded, or are considering expanding, into navigation because they see the need and get the requests. "Okay, we can educate women all we want. We can give them the brochure with the number. We can call for them and we can make an appointment for them, but if they can't physically get there because of transportation, we've failed them in that way."
An important role for navigators is to connect women with non-medical support services. Even though many services for breast cancer patients currently exist, these services are likewise fragmented and can be challenging to locate and connect with. One respondent mentioned that she often hears from cancer patients and survivors the desire to start their own support service organizations, because they had not been able to find the services they needed for themselves. "I said (to the patient) you mean to tell me you have founded an organization that provides hats and wigs for women? And she was like, yeah. And I said 'why don't you join (with) this other organization... this is what (they do).'"
Access to Navigation Depends Upon Providers and Insurance
Findings from the key informant interviews indicated divergent perspectives on the availability of existing navigation programs, and which providers/programs best supported patient navigation. Some respondents suggested that healthcare safety net providers, such as public health systems and Federally Qualified Health Centers, were most helpful with navigation. One respondent suggested that women with private insurance are assumed to have a support system, and thus those receiving care from private providers were less likely to be offered patient navigation services.
Other respondents noted that insurance plans can also play a role in access to navigation. One noted that HMOs help with navigation better than other plans. Another described an example of a patient who was provided access to a navigator under her first insurance plan. After the patient changed insurers, the new company did not offer such services to its enrollees. So, although the patient was privately ensured, navigation services were not an automatic benefit.
Although informants differed in their opinion of specific health care settings, most agreed that a well-run navigation program was invaluable for helping women succeed in moving through the complex process of receiving high quality breast cancer care.
Navigation Programs Vary in Service Offerings and Quality
Respondents indicated that navigation programs varied in the range of services offered and quality. There was consensus that navigation cannot stop at the hospital doors, and must extend to support services. Respondents felt strongly that navigators should:
* Communicate with the doctors to help ensure timely delivery of services.
* Follow-up on mail sent to patients, ensure timely follow through. Lack of follow-through could force changes in insurance, impacting care.
* Help interpret technical medical terms into common language to explain the diagnosis and treatment options, enabling the patient to make more informed decisions about care.
* Be available to all women, regardless of insurance status; some women who have insurance still do not know how to navigate the health system.
* Have a repository of resources for support services for referrals. Often providers and their staff are unaware of outside programs.
Another shared this perspective that highlights the variety of needs that are met by navigators: "We end up taking on that role of individuals calling us later on, because they knew that we were really helpful in getting them to get a mammogram and now they're facing... an abnormal result... We deal with requests for information [and] provide the technical assistance behind any patient who calls us to ask for help."
Respondents also noted challenges in implementation of quality navigation services. First, HIPPA regulations can cause issues with programs that are not officially tied to a hospital or provider, as doctors cannot discuss private patient information with a third party. These barriers are amplified when the navigator is assisting someone with limited English proficiency, and is needed to help translate clinical discussions with providers, schedule appointments. Second, there may be a lack of coordination between providers and navigators, particularly if providers are unfamiliar with community-based navigation programs. Third, navigators who are not knowledgeable about support services may not be as helpful as those with experience both in healthcare and community resources.
Patient Navigators Can Also Benefit Health Systems
The role of a navigator does not need to be limited to serving the patient. Due to their intimate knowledge of challenges, barriers, and possibly successful solutions, they can feed back valuable information to providers and health systems. One respondent relayed a specific example of a Thai health navigator, who was well known to local health systems. Area hospitals provided her parking access and a badge, and designated certain days for screenings of Thai women. The navigator participates on the health system's tumor board, where she helps the provider understand the patient perspective in treatment decisions. She offers the point of view of a patient and women, commenting on what was being recommended and what could be a barrier to care. This is an example of a successfully collaborative relationship between providers and navigators. (24,26,32-36)
Language as a barrier is discussed more in-depth later in this report, but this is another area in which non-navigators find themselves in the position of acting as a navigator. One respondent mentioned that because she spoke the language, Spanish speakers open up to her because they don't want to appear uneducated in front of a doctor in a white lab coat.
One respondent noted that her organization recognizes that patients have better outcomes when they work with a patient navigator to develop an individual treatment plan: "Not everybody has the ability to understand their choices or make medical decisions without having something really laid out in front of them that specifically. Especially for medically underserved patients who do experience limited access to medical care and they have language barriers."
Quality of Care Differs by Health Insurance Status
The Institute of Medicine (IOM) defines quality of care as "the degree to which health services increase the likelihood of desired health outcomes and are consistent with current professional knowledge." (37) As such, measures of quality often focus on whether treatment is consistent with those recommended by clinical organizations such as American Society of Clinical Oncology (ASCO) and the National Comprehensive Cancer Network (NCCN), which develop guidelines and measures based on the scientific literature. (22) For patients with early stage breast cancer and certain clinical characteristics, they are often given the opportunity to choose between two different surgical options: modified radical mastectomy versus breast conserving surgery followed by radiation therapy. While modified radical mastectomy is appropriate for some patients, breast conservation therapy is largely regarded as the optimal treatment for most, as it largely mitigates the psychosocial and clinical consequences associated with the more invasive mastectomy. (38) We identified two recent studies, one national and one specific to California, that found receipt of breast conserving surgery and radiation therapy (rather than modified radical mastectomy) differed by women's health insurance status.
A landmark study published in 2015 using the California Cancer Registry examined outcomes by type of health insurance among about 700,000 Californians diagnosed with breast, colon, rectal, lung, and prostate cancer between 2004 and 2012. (39) They tracked how early cancer patients were diagnosed, their quality of treatment and their five-year relative survival rates according to their type of insurance. Among a number of findings, the study reported that Medi-Cal patients with stage 0-II breast cancer were the least likely to receive breast-conserving surgery (52.2%). Medicare patients were significantly more likely to receive breast-conserving surgery (61.1%) than patients having any other source of insurance. Breast cancer patients under 70 years of age who were uninsured or had Medi-Cal coverage were the least likely to receive recommended radiotherapy following breast-conserving surgery (64.4% and 65.2%, respectively).
Insurance Status Can Affect Treatment Paths
In breast cancer care, there may not always be a definitive guideline or evidence base to determine whether one treatment is "better" than another. Ideally, providers and patients would then engage in a shared decisionmaking process to select among treatment alternatives; insurance status would not have an impact on treatment decisions. However, we identified two studies that found that insurance status was also related to receipt of two types of treatment.
* Bilateral mastectomy. Although removal of only the breast cancer tumor or the affected breast is the most typical surgical treatment for breast cancer, bilateral mastectomy use is increasing over time. The increase in use of bilateral mastectomy may be indicated, especially when results of genetic testing results suggest the potential benefit, or may reflect overtreatment among more affluent populations. In a study of California women who had undergone surgery, women who had unilateral mastectomy have public/MediCal insurance, and were treated in hospitals serving predominantly patients of lower SES. (40,41) Another study found that women who underwent bilateral mastectomy were more likely to be non-Hispanic white and privately insured, to live in high SES neighborhoods, and to be treated in NCI-designated cancer centers. (19)
* Brachytherapy. Radiation therapy is accepted as an important component of adjuvant treatment of breast cancer. For patients with certain disease characteristics, brachytherapy (radiation therapy given in or near the tumor itself such that a high radiation dose hits the tumor while reducing the radiation exposure in the surrounding healthy tissues) is considered to be a relatively cost-effective alternative to traditional external beam radiation therapy. In a national study, among patients who had Medicaid coverage or were uninsured brachytherapy was less often used in the definitive or postoperative management of cancer compared to those with non-Medicaid insurance. (42)
Narrow Provider Networks Cause Delays in Care
Findings from key informant interviews suggest that treatment paths may vary by insurance status in part due to the providers and facilities that a patient can access. There is no doubt that there has been a growth in health insurance plans offering limited provider networks: A California Health Care Foundation report in 2015 reported that Covered California plans offered narrower hospital networks than commercial plans. (43) However, they also found the quality of care (measured using an index made up of twelve AHRQ quality indicators reported by California hospitals) provided by these restricted networks was not significantly different than the care provided in non-Covered California plans, and in some cases may be of higher quality. (44) There have not been studies examining quality, including timeliness, of care, of Covered California plans specifically for breast cancer.
There were limited findings in regards to narrow networks specifically under Covered California. In key informant interviews, one respondent noted the presence of cultural issues, rather than reimbursement issues, that affected access for patients with insurance under Covered California: "The (geographic) area is also conservative, and some providers will not accept certain insurance because they don't want to appear to support Obamacare."
However, several respondents in our study reported that women have had difficulty finding providers that accepted Medi-Cal or uninsured patients. One respondent noted Medi-Cal reimbursement rates as an issue contributing to narrow networks: "The decrease in Medi-Cal reimbursement rates for providers is posing a huge barrier for us. We see our network of referral providers diminishing on a pretty significant basis... that has been unprecedented."
The difficulty in finding a provider, particularly a specialist, who accepts Medi-Cal, can lead to undue delays in receiving treatment. County hospitals have long wait times for appointments, and the uninsured have very limited options. Furthermore, the limited number of providers who accept Medi-Cal can also lead to disparities in quality of care. For example, multiple respondents pointed out that Medi-Cal recipients have less access to cutting-edge treatments being explored at institutions such as the UCLA Medical Center or City of Hope.
Insurance Authorization Processes Lead to Delays in Care
Among key informants, it was not only simply lacking insurance or underinsurance that was perceived as a barrier, but also the challenges of enrollment and authorization among insured women--both publicly and privately insured.
The insurance authorization process contributes to delays in care. A respondent said approvals for OncotypeDX, a genomic test that can help guide treatment decisions, can delay treatment up to a month and half. She noted that this is a new delay, as recently as 2014 the approvals were only taking two weeks. Barriers were less common with certain forms of treatment, namely surgery or chemotherapy. Consistent with our key informant interviews, a study of breast cancer patients in California found that the prolonged insurance authorization process led to delays in performing diagnostic tests, thus delaying treatment 3 months or more. (45)
The delays due to authorization have even driven some women with private insurance to seek care from safety net providers. A respondent reported that some women had given up waiting for authorizations for procedures with their regular doctors and had turned to the community clinic for quicker access to biopsies, mammograms or surgeries.
Women Covered Under Public Programs Experience Delays Due to Eligibility and Authorization
Some of our key informant respondents worked with programs that helped uninsured and/or low-income patients sign up for insurance or public programs. This is perceived as helpful, but does not reach all populations. Undocumented women in particular often don't access services out of concerns they will not qualify. Additionally, limitations and changes in access-enhancing programs interrupt continuity of care. For example, the length of public programs can become a barrier to completing treatment: "(The Breast and Cervical Cancer Treatment Program) BCCTP program is 18 months. One woman did not know she could get reconstruction under the program in that time." "Programs have limited shelf life... women go every two weeks or every so often to get (a specific) medicine. And then all of the sudden the doctor calls and says that medicine is not covered anymore and we're not gonna see you."
Treatment delays may also be created by the eligibility process for insurance coverage: "I had one lady... .one of the ladies that she cleaned the house for was going to help pay, you know, the $1000 consultation fee here out of pocket. But we couldn't take her out of pocket, because of her Medi-Cal being in process. And so she kind of felt at a loss, because she wanted to get this started but the Medi-Cal was taking a long time to process her application."
Out of Pocket Costs Pose a Financial Burden
For women covered under private insurance, access to and the high cost of copayment for oncology treatment and drugs is a commonly discussed issue in the literature and in key informant interviews. While the ACA requires states to establish marketplaces that allow the public to easily compare different healthcare plans, comparing costs and coverage of plans is not simple and consumers appear to have trouble deciding which plans to enroll in when choices are given. (46)
Multiple reports have highlighted the cost of cancer drugs as a financial burden to patients receiving treatment. A study by the American Cancer Society Cancer Action Network (ACS CAN) revealed that cancer drugs are most often placed on the highest cost-sharing tier; in California, the coinsurance for the highest cost tier is 20%. (47) ACS CAN authors also observed significant gaps in the transparency of prescription drug coverage, and challenges to being able to compare and thus pick plans. In an analysis by Avalere Health looking at Covered California plans, they found plans tended to place all drugs used to treat complex diseases such as HIV/AIDS, multiple sclerosis and cancer on the highest formulary cost-sharing tier. (48) Recent reports by California Health Care Foundation also suggest costs of drugs likely affects access to care. (10,11)
Key informant interviews reinforced the studies that suggest low-income women who have insurance, but prohibitively high co-payments, face substantial barriers to care. "$100 is a lot of money if you have to go to the doctor three times a year."
In addition, cost of a second opinion is a major issue. There are some programs that offer free second opinions in an attempt to address these barriers, but as with other support services, they are not common, nor easy for patients to identify and locate.
Given the concerns about high co-pays and other out-of-pocket costs, cancer treatment may be perceived as unaffordable even though these women have health insurance. Respondents expressed concerns that little assistance is available for underinsured women due to the perception privately insured patients, "can quote, afford, to have cancer." "It doesn't matter what your income level is, when you have cancer, bills add up and priorities have to change."
High Deductible Health Plans Are an Emerging Issue in Out of Pocket Costs
In 2015, an estimated 46% of individuals with employer-provided insurance had high-deductible health plans (plans with deductibles of $1,000 or higher), compared to 10% in 2006; and the average deductible increased from $917 for individual coverage in 2010 to $1,318 in 2015. (49) Research has shown families on these plans tended to reduce medical spending, cutting back on preventive care and initiating fewer episodes of care. For cancer patients, high deductible plans can pose a challenge to families to pay bills for cancer tests and treatments. (50)
Fear of Costs Can Lead to Delays or Failure to Seek Care
One key informant noted that undocumented women in particular cannot get biopsy services covered, and many are not having the procedure since they cannot afford to pay out of pocket. Some are not aware of the costs or potential for assistance through public or charitable programs. Although they may have access to a diagnostic procedure or treatment, the fear of costs alone may stop women from seeking care.
Respondents also noted that low-income women are especially discouraged when, after receiving a free screening mammogram, discover that they face many expenses such as co-payments and deductibles to obtain follow-up tests and treatments after a suspicious mammogram. Women may not be aware of programs such as Every Woman Counts that exists to help women with costs of treatment and follow-up, however individuals must meet financial requirements to qualify (income at or below 200% of federal poverty level and be uninsured or not able to afford payments if insured).
Patients Face Substantial Costs Beyond Care
Insurance coverage also bears no impact on the considerable non-medical expenses associated with receiving breast cancer treatment, such as dependent care, lost wages, transportation to health care facilities, and so on. One respondent was very pointed about the perception that insurance equated to affordability: "People who do not have a copayment seemed to have an easier time actually being able to go to their doctor's appointment, if they have a sitter."
In addition to everyday expenses, patients going through treatment may face additional barriers of family care (if a patient needs household help during treatment), transportation to appointments, and/or childcare during treatment times. And all of this may be more complicated for patients for whom lost time at work means lost wages. "She had to decide putting a roof over her and her children's head and food on the table or pay for the Tamoxifen... and so, she wasn't taking her Tamoxifen."
Individual and Cultural Characteristics
Health Disparities by Race/Ethnicity Persist
Among the literature on barriers to breast cancer care that was pulled from peer-reviewed sources emerged a number of descriptive studies on the disparities in breast cancer incidence, mortality and quality of care by race/ethnicity and socioeconomic status. (19,40,41,51-55) While racial/ethnic differences in breast cancer mortality may very well be related to tumor characteristics, aggressiveness of the cancer, and biologic response to treatment, disparities may also be attributed to differences in stage at diagnosis and the quality of breast cancer care received. Results of studies conducted among women from four racial/ethnic groups (African American, Asian American, Latina, and non-Latina White) in the California Breast Cancer Survivorship Consortium suggest that even after adjusting for age, tumor characteristics, and lifestyle, compared with non-Latina Whites, the breast cancer-specific mortality is higher for African Americans, lower for Latinas, and lowest for Asian Americans. (56,57) Compared to other racial/ethnic groups, African American women in California are the most likely to present at late stage of diagnosis. Nonetheless, African American women have the highest breast cancer screening rates (African American 67%, Hispanic 56%, non-Hispanic white 63%, Asian/PI 55%), (58) which suggests that screening is not driving stage of diagnosis. It is possible that other barriers, such as those stemming from insurance status, may impede African American women from receiving a timely diagnosis and timely access to treatment.
Women Experience Cultural Barriers to Seeking Breast Cancer Treatment
Although some barriers to receiving breast cancer care such as lack of appropriate health insurance are universal, other barriers may be specific to a particular cultural group. The literature retrieval covering the period 2013-2015 generated a few papers on the impact of culture on the breast cancer experience among Asian Americans, (18,59) Hmong immigrants, (60,61) Latinas, (62,63) Jordanian- and Palestinian American women, (64) however these papers were largely concerned with perceptions regarding screening and survivorship. There were, however, key informant interview responses that point to cultural barriers to breast cancer treatment. For example, several respondents noted that there is a lack of awareness, as well as myths and misconceptions, about breast cancer and treatment in many ethnic minority communities. One community educator heard women from a particular culture say that they believed mammograms caused breast cancer.
Across several cultures, perspectives on cancer are linked to fatalistic beliefs. (65) Women from these cultures may perceive cancer as a death sentence, and they simply accept it or may not even want to know when it is present. They hear stories from other women who have had chemotherapy about all of the negative aspects to the process.
In some communities, community educators may need to involve men in the process of breast cancer education due to the sensitivity of the topic and perceptions about the appropriate roles of women in these cultures. Outreach has to start with raising awareness of breast cancer screening and treatment to men, who in turn allow access to their wives, sisters, and daughters for further education and outreach about screenings and treatment.
Our key respondents also noted that in some cultures, health is just not discussed. Consequently, women may be unaware that they are at increased risk for breast cancer due to family history.
Our findings are consistent with substantial prior research, conducted in California and throughout the country, that has found racial/ethnic differences in attitudes towards breast cancer and perceived barriers to accessing breast cancer services. (66-72)
Provider--Patient Interactions Affect Care
In our literature retrieval, we found that in a study of Latinas with abnormal mammograms, ethnic differences in communication needs and experiences with health-care providers appeared to contribute to delays in obtaining care. (73) While Latinas and Non-Latina White women differed in how they rated their comprehension of abnormal results and follow-up care, both groups felt empathic communication was important. Patient--provider interaction/communication was found to be an important predictor of well-being and quality of life in large longitudinal study of women enrolled in the California BCCTP examined 921 low-income women with breast cancer. Better patient perceptions of patient--physician interactions were found to be associated with better mental well-being and quality of life. Patients reporting having received more information from providers, reported better mental well-being and quality of life; patients reporting having received more emotional support from their doctors reported better well-being; and, patients reporting having received more social support reported having better quality of life.
In our key informant interviews, we found cultural differences impact provider interactions with patients, above and beyond linguistic differences. One respondent representing an organization that focuses on Black women noted she often heard that her clients do not have providers that talk to them in a language (culturally) that they can understand. She reported this was also an issue for Asian American and Pacific Islander women. Beyond language barriers, many ethnic minorities women would see a provider from their same racial/ethnic group, which they feel can improve communication and satisfaction with care.
Limited Cultural Health Capital Can Negatively Impact Interactions with Providers
Respondents also shared that the power differential between women, particularly ethnic minority and low-income women, and the doctor, who is perceived as an authority figure, impedes effective doctor-patient communication. They believe some patients have this fear and think to themselves "Oh, maybe I should know this and I am asking a stupid question." "I don't know if it's a language barrier. I don't know if it's a way of thinking; because they are low income, because of the class that they grew up in. But it's almost like this fear of asking questions from the doctor, because the doctor is know-all, be-all."
Both key informants and the reviewed literature extensively address the barriers posed by women with limited English proficiency. These findings were considered so substantive as to merit a separate discussion, presented below.
Fear and Stigma Can Lead to Increased Anxiety and Delays in Seeking Care
Respondents described the anxiety that goes beyond the fears associated with diagnosis, treatment, and affordability. Fear and stigma in certain cultures cause women to keep diagnosis to themselves, adding to their personal burden. Women who are caregivers and feel a cultural obligation to take care of others also fear of what happens to their families. Many face questions of disclosure. Do I tell my family (stigma)? Do I tell my employer (fear of job loss)?
Keeping a breast cancer diagnosis private can be very important in some communities, and women with this perception may be willing to take long bus rides to see a provider that is from outside of their cultural and geographical community. Respondents reported that women from some cultures feel there is a shame in being a burden and try to avoid burdening others with their breast cancer diagnosis. These fears can lead to delays in seeking care and locating a provider for breast cancer treatment.
Women Experience Cultural Barriers to Seeking Support Services
Breast cancer patients have care needs that are outside their course of treatment. But some experience cultural barriers to seeking and utilizing support services. Just as patients may prefer providers that they can relate to culturally, patients feel more comfortable identifying with a navigator of the same culture. "People may be more inclined to follow through... if they would have someone who is from their own community who speaks (culturally) like them."
Similarly, women are most comfortable joining a support group with women who look like they do, and speak the same language (see Language). Several respondents noted the need for more culturally appropriate services. "Some people tell me that the support groups didn't look like them, so they kind of felt like they didn't belong, and they didn't go back."
The Rural Versus Urban Myth
Geography does not eliminate barriers to care, it may just change the type of barriers most prevalent. It is well established that rural cancer patients across the U.S. face challenges in receiving oncology care, stemming largely from the limited availability of cancer treatments and cancer support providers, transportation and financial limitations, and poor access to clinical trials. (74) Rural women have also been shown to be less likely to receive radiation therapy for breast cancer compared to their urban counterparts. (75,76)
While our key informant interviews commented that rural areas have a small number of providers and fewer transportation options for access both care and support services, respondents from urban areas--where there are a higher number of providers--reported similar barriers. Large urban areas have more options (like specialists can accommodate multiple languages) and better public transportation systems, but can be more difficult to navigate than less densely populated communities. One respondent noted that if a patient "doesn't have transportation and the doctor's office is on the other side of town, even though they live in LA, it's still an hour or two hours away."
Still, inequities in cancer treatment may in part be due to where patients go to get care. Geographic variation in breast cancer surgery rates has been examined by the California Health Care Foundation (CHCF). (77) CHCF found breast cancer patients in several California communities undergo mastectomy, lumpectomy, radiation, and other treatments for breast cancer at rates notably higher or lower than other communities and the California rate.
Language and Health Literacy Impact Quality of Care
Health literacy, as defined by the US Department of Health and Human Services, is " the degree to which individuals have the capacity to obtain, process, and understand basic health information and services needed to make appropriate health decisions." (78) The literature suggests patients may experience challenges understanding the communication they receive from their health care provider, made worse when English is not their first language. (73,79-90) Even patients who are proficient in English (or the language of their health care provider) may not understand complicated, technical medical terms and may have low health literacy. These patients may have difficulty understanding instructions from the doctor, and medication instructions from the pharmacist. Even some patients who can verbally understand instructions may have difficulty reading written instructions from a health care provider or follow-up appointment notifications sent through the mail. In addition, printed educational materials are often not available for all of the diverse immigrant communities of California. This is a challenge given interpretation is only available at the doctor's office and cannot help patients overcome barriers to understanding written materials once at home.
Even within the doctor's office, interpreter service has its challenges. Many respondents felt there was a lack of interpreters overall, and indicated that interpreters were often not available for the full interaction between a patient and a provider's office. For example, although an interpreter can be called in for the brief period when the patient actually sees the physician, interpretation is often not available for interactions with the front office staff when in the waiting room, or for making clinic appointments, or completion of insurance paperwork. Clinic staff often do not have the language skills to fill in when interpreters are not available and in-person interpretation is not available in all languages (for example, Hmong). One respondent had heard a patient was told by a doctor to change providers in order to access an interpreter.
Not only does a language barrier make it difficult for patients to understand providers, it will inhibit them from asking questions during the process, impacting their overall care and decision-making ability.
Language as a Barrier to Support Services
Many resources available through public programs, support groups, and online are limited to English, and perhaps Spanish. This presents a barrier to even searching for support services. More than one study respondent mentioned that because she spoke Spanish, she would go do community events or talk to patients in a screening program, and they would gravitate to her and open up to her because she spoke the language.
Further, they have a more difficult time identifying services that are available to them. And, similarly to the cultural aspects of a support group, patients with limited English proficiency have trouble finding in-language support groups.
Knowing One's Legal Rights
In our literature retrieval, a study on patient navigation argued for the need for navigators to be better trained to identify legal issues their patients are facing as a part of their patients' cancer treatment plan. (91) One of our key informants noted a lack of knowledge of one's legal rights as a barrier faced by breast cancer patients, but as it impacts several other barriers, it seemed worth mentioning. Patients are protected by non-discrimination laws directed at housing and employment. Patients who are unaware and face issues with their jobs or residences will face additional barriers beyond treatment.
Figure 2 depicts a schematic of major themes of barriers faced by women undergoing breast cancer treatment.
Legislative Scan and Policy Recommendations
To formulate policy recommendations, we used the unifying themes--(1) Health System Barriers and Navigation, (2) Insurance, (3) Cost, (4) Individual and Cultural Characteristics, and (5) Language, to search for California legislation (proposed bills and introduced laws) that address barriers to cancer care. We used California's official search tool for legislative information http://leginfo.legislature.ca.gov. A total of 15 bills in the 2015-2016 legislative session were retrieved in the search as well as another 26 bills for 2013-2014 (see Appendix D) for detailed search criteria and detailed bill summaries).
We found few examples of legislation that specifically addressed barriers in diagnosis and treatment of breast cancer from 2013 to April 2016.
* We identified provisions within bills that exempted breast cancer treatment from proposed cuts in Medi-Cal reimbursement.
* Another bill contained a provision requiring breast and cervical cancer screening programs, i.e. Every Woman Counts, to provide information on insurance coverage for women who receive services through their program.
* A bill that limited the cost-sharing for oral anticancer medications was passed in 2013.
* More often, we found legislation that continued funding for breast cancer screening and outreach, breast cancer research, and the Breast and Cervical Cancer Treatment Program (but no changes to the program).
* We found one bill (AB 1795, 2016, under review by Committee on Appropriations) that directly addresses coverage for breast cancer treatment. This bill proposes to extend the time limit for the Breast and Cervical Cancer Treatment Program from a set number of months (18 for breast cancer) to the time needed to complete treatment. Given the delays in locating providers, as well as treatment regimens such as hormonal therapies that continue for multiple years, this type of policy addresses a barrier for particularly vulnerable women would not otherwise have coverage for care.
We found bills that addressed costs and access to healthcare, and breast cancer patients could potentially benefit.
* Legislators proposed multiple bills aimed at network adequacy within health plans and limits on cost-sharing in general as well as specifically for prescription drugs.
* Legislation to provide reimbursement for interpreter services has been passed and vetoed twice.
* We also identified bills specific to other health conditions that could serve as examples for policy on breast cancer, such as subsidies for copayments and deductibles, network adequacy of specialists, and bundled Medi-Cal payments for integrated health, behavioral and social services.
* We found no legislation that addressed patient navigation services for cancer care.
* We found no legislation that mandated insurance coverage for patient navigation services for clinical or supportive care.
* We found no legislation that addressed network adequacy specific to breast cancer care, or cancer care in general.
* We found no legislation that addressed the numerous costs that patients experience outside of direct medical care for breast cancer.
* We found no legislation that addressed Provider-Patient Interactions, Cultural Barriers, or Fear and Stigma, specific to breast cancer or applicable to breast cancer patients.
* We found vetoed legislation that addressed language barriers: AB-1263 (2013) and AB-2325 (2014), which would have required the Department of Health Care Services to establish CommuniCal, a program to provide and reimburse for medical interpreter services.
In the first years following ACA implementation, breast cancer patients in California continue to face delayed and restricted access to life-saving, life-extending treatments and to services that enhance quality of life. Furthermore, those uninsured, covered by Medi-Cal, California's Medicaid program, and those with commercial private insurance have all experienced challenges.
For women across all types of insurance coverage, health system fragmentation and the complexities of navigating cancer care created difficulties in obtaining timely and appropriate care. Delays in timely access to specialists in oncology, narrow networks of breast cancer specialists, restricted prescription drug formularies for oncology drugs and oncology support (e.g. drugs for chemotherapy-related anemia) affect patients regardless of insurance type. We found interest in cancer navigation programs and literature suggesting the benefits of navigation on quality and satisfaction. Access to a navigation program appears to be less related to type of insurance coverage, and more so due to local health systems or health plans. Women receiving care at an integrated health system, whether covered by Medi-Cal or commercial insurance, may encounter fewer difficulties because these systems are less fragmented and more likely to offer patient navigation programs.
In addition to common challenges faced by all California women diagnosed with breast cancer, our findings suggest type of insurance coverage may shape access to care. Those covered under Medi-Cal may face delays in care due to a lengthy eligibility process and from potential trouble finding providers who accept Medi-Cal. The percent of physicians accepting new Medicaid patients has found to be lower than the percent of physicians accepting new patients with Medicare or private insurance. (92) Recent research has also found that women with Medicaid coverage receive lower quality of care compared to those with other types. (39) Thus, although Medicaid expansion has brought considerable benefit to low-income populations, we expect disparities in access and quality of care may continue for women with breast cancer.
Privately insured women can also face significant challenges due to health system barriers: narrow provider networks, long wait times for insurance authorization, and high deductibles and co-payments. For women living with near-poverty incomes, managing the costs of care along with transportation costs, childcare costs and lost wages can pose financial risks and can delay receipt of much-needed care. Further research is needed on quality of care post-ACA that is specific to low-income women. We also found ongoing barriers due to cultural and linguistic challenges experience by women across insurance coverage types. Health insurance expansion does not address stigma, poor communication and interaction with providers, or lack of health and supportive services in language and literacy levels accessible to diverse populations.
Lastly, although we find challenges across coverage types, lack of health insurance coverage appears to be a fundamental barrier. Nationally, health insurance expansion has improved access to care and lowered financial risk. (93,94) Our findings reinforce the critical need for public programs that support women who cannot access coverage post-ACA.
We found an increasing recognition of the challenges faced by breast cancer patients in receiving care. A total of 15 bills in California's 2015-2016 legislative session addressed issues salient to the barriers identified in this report, such as breast cancer programming, care integration, patient navigation, health plan network adequacy, Medi-Cal reimbursement and access, cost-sharing, costs of drugs, costs of non-medical care, and language and linguistic access. While promising, it is notable that there has not been any legislation addressing patient navigation services for cancer care, or mandates for services for clinical or supportive care. Similarly, there has not been legislation to address network adequacy specific to breast cancer care, or cancer care in general.
While this study provides a general assessment of barriers to care using a multi-pronged methodology that triangulates findings from key informant interviews, literature, and media, there are a few notable limitations. First is that this is not a comprehensive study and while we the patient navigators interviewed for this study offer a glimpse into the barriers faced by patients, we do not have direct patient voices in this study. Physician providers were also not included in the key informant group; they are the focus of a follow-up study. While care was taken to identify participants representative of stakeholders across California, our sample of 12 key informants may not represent all of the different providers in the diverse state and the special needs of subpopulations. Lastly, the healthcare landscape may be quickly changing in 2017 and beyond as there is debate around repealing the ACA.
The issues and key barriers identified in this report can help policy makers target issues facing women with breast cancer in California and help reduce the marked disparities in treatment they are currently facing. In light of our study findings and legislative scan, we provide the following general recommendations for consideration by legislators, regulators, purchasers and health insurers:
Recommendations to Address System Barriers
* Provide reimbursement for patient navigation services, especially in private health plans that currently lack these services. Patient navigation can help to tackle issues of health system fragmentation, patient-provider communication, decision-making, and numerous individual and cultural challenges, including health literacy, cultural barriers, fears, and linguistic access.
* Establish quality standards for patient navigation.
* Expand existing screening and prevention programs to educate women diagnosed with breast cancer and their providers on patient navigation, including what the role of a navigator is, what services are included, and how to obtain navigation services.
* Support the development of a repository of information on health care service providers and support services that can be locally tailored and available to providers and navigators.
Recommendations to Address Insurance Barriers
* Raise Medi-Cal provider rates so they are more acceptable to providers. Women covered by Medi-Cal and the Breast and Cervical Cancer Treatment Program will face fewer delays in care if more providers can be incentivized to participate in the Medi-Cal program.
* Streamline authorization processes and meet a set target for turnaround time. Women face delays in care due to prolonged insurance authorization, thus failing to receive timely treatment.
* Evaluate health insurance plans for narrow provider networks specific to breast cancer diagnosis and treatment. Additional investigation is needed to quantify the extent to which narrow networks and the lack of providers accepting Medi-Cal lead to delays in care, and ultimately, adverse clinical outcomes. In March 2014, the Centers for Medicare & Medicaid Services (CMS) defined network adequacy standards to help determine whether health plans offered in healthcare exchanges provide access without unreasonable delay to certain health care providers, including oncology providers and hospital systems.
* Extend benefits for the Breast and Cervical Cancer Treatment Program beyond 18 months. Due to delays in locating providers, authorization processes, and above all, the lengthy treatment course for some women (which can last 5 or more years), the BCCTP should be extended from 18 months to time deemed medically necessary to complete treatment.
* Allow participation in Medi-Cal and Covered California regardless of immigration or documentation status.
Recommendations to Address Cost Barriers
* Remove cancer drugs that are recommended by national clinical guidelines from the highest tiers. Drugs that are cited as standard of care, e.g. recommended by the National Comprehensive Cancer Network, should be removed from the highest tiers (and thus highest cost-sharing).
* Provide financial assistance for co-payments and deductibles for breast cancer diagnosis and treatment services. Such assistance is particularly needed for women whose incomes are low enough to qualify for subsidies for Covered California premiums.
* Provide financial assistance for non-medical costs, including transportation, childcare, and lost wages.
* Provide tools and information for consumers to make informed choices, including cost calculators, complete lists of all covered breast cancer drugs, up-to-date formularies which includes information on tiers and restrictions on drug access, and up-to-date and complete provider directories and information on in and out of network use of providers and costs.
Recommendations to Address Individual and Cultural Barriers
* Provide additional funds to breast cancer screening programs, such as Every Woman Counts, to conduct community education and outreach to address fears and stigma regarding breast cancer diagnosis and treatment.
Recommendations to Address Language Barriers
* Require interpretation and translation services that extend beyond the visit, to include the entire span of the care experience such as making appointments and patient education.
* Provide additional reimbursement for support services offered in multiple languages.
Appendix A MeSH and Keywords Search
MeSH terms used to search PubMed Keywords Breast Neoplasms (all searches included this Breast cancer MeSH term) Used one by one with AND "breast Used one by one with AND "breast cancer" AND "access to care" neoplasms" Barriers to care Costs and Cost Analysis Access to care Patient Protection and Affordable Care Act Delay in care Health Expenditures Affordable Care Act* Drug Costs Health reform Health Services Accessibility Network adequacy Community Networks Narrow network Consumer Participation Costs of care Insurance Coverage Prescription drug costs Communication Barriers Cost sharing Patient Navigation Out of pocket costs Social Determinants of Health Patient costs Cultural Competency Access to drugs Social Discrimination Oncology drugs Racism Oncology support Ageism Formularies Sexism Registry tracking Registries Race United States Ethnicity California Gender California Appendix A.1 Citation List of Literature (2013-2015) Identified for Abstraction Author Title Adepoju L, Wanjiku S, Effect of insurance payer status Brown M, et al. on the surgical treatment of early stage breast cancer: data analysis from a single health system American Cancer Society Cancer Facts & Figures 2016. American Cancer Society ACS CAN Examination of Cancer Action Network Cancer Drug Coverage and Transparency in the Health Insurance Marketplaces Ashing-Giwa, K.; Rosales, Depressive symptomatology M.; Lai, L.; Weitzel, J. among Latina breast cancer survivors Avalere Health Exchange Benefit Designs Increasingly Place All Medications for Some Conditions on Specialty Drug Tier Bestvina, C. M.; Zullig, L. L.; The implications of out-of-pocket Yousuf Zafar, S. cost of cancer treatment in the USA: a critical appraisal of the literature Bickell, N. A; Paskett, E. D. Reducing inequalities in cancer outcomes: what works? Bourdeanu L, Luu T, Baker Barriers to treatment in patients N, Swain-Cabriales S, Chung with locally advanced breast CT, Mortimer J, Hurria A, cancer. Helton S, Smith D, Ferrell B, Juarez G, Somlo G. Bradley, C. J.; Wilk, A Racial differences in quality of life and employment outcomes in insured women with breast cancer Bradley, C.J. Economic recovery: A measure of the quality of cancer treatment and survivorship? Brot-Goldberg Z, Chandra What Does a Deductible Do? A, Handel B, Kolstad J. The Impact of Cost-Sharing on Health Care Prices, Quantities, and Spending Dynamics. California Cancer Registry California: Cancer Facts and Figures 2014 California Healthcare Medi-Cal Versus Employer-Based Foundation. Coverage: Comparing Access to Care California Healthcare Early-Stage Breast Cancer Foundation. Treatment in California: A Close-Up of Geographic Variation California Healthcare California Employer Health Foundation. Benefits: Rising Costs, Shrinking Coverage: Dominick, S. A.; Natarajan, Patient compliance with a L.; Pierce, J. P.; Madanat, health care provider referral for H; Madlensky, L. an occupational therapy lymphedema consult Dowling, E. C; Chawla, N.; Lost productivity and burden of Forsythe, L. 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Time to a Breast Cancer Diagnosis: The Mediating Effects of Health Care Facility Factors Morrow, M.; Li, Y.; Access to breast reconstruction Alderman, A. K.; Jagsi, R.; after mastectomy and patient Hamilton, A. S.; Graff, J. J.; perspectives on reconstruction Hawley, S. T.; Katz, S. J. decision making Ohri, N.; Rapkin, B. D.; Predictors of radiation therapy Guha, D.; Haynes-Lewis, H.; noncompliance in an urban Guha, C.; Kalnicki, S.; Garg, academic cancer center M. Pan, I. W.; Smith, B. D.; Factors contributing to underuse Shih, Y. C. of radiation among younger women with breast cancer Parikh-Patel A, Morris CR, Disparities in Stage at Martinsen R Kizer KW. Diagnosis, Survival, and Quality of Cancer Care in California by Source of Health Insurance Parikh, A. R.; Kaplan, C. P.; Ductal carcinoma in situ: Burke, N. J.; Livaudais- knowledge of associated risks Toman, J.; Hwang, E. S.; and prognosis among Latina Karliner, L. S. and non-Latina white women Parise, C. A.; Caggiano, V. Disparities in race/ethnicity and socioeconomic status: risk of mortality of breast cancer patients in the California Cancer Registry, 2000-2010 Parise, C. A.; Caggiano, V. Disparities in the risk of the ER/PR/HER2 breast cancer subtypes among Asian Americans in California Patel, K. K.; Tran, L. Opportunities for oncology in the Patient Protection and Affordable Care Act Primeau, S. W.; Freund, K. Social service barriers delay M.; Ramachandran, A.; Bak, care among women with S. M.; Heeren, T.; Chen, C. abnormal cancer screening A.; Morton, S.; Battaglia, T. A. Ramachandran A, Freund Multiple Barriers Delay Care KM, Bak SM Heeren TC, Among Women with Abnormal Chen CA Battaglia TA. Cancer Screening Despite Patient Navigation Ramirez, A.; Perez-Stable, Reducing time-to-treatment in E.; Penedo, F.; Talavera, G.; underserved Latinas with breast Carrillo, J. E.; Fernandez, cancer: the Six Cities Study M.; Holden, A.; Munoz, E.; ((San Francisco, San Diego, San Miguel, S.; Gallion, K. New York, Miami, Houston and San Antonio, Texas) Retkin, R.; Antoniadis, D.; Legal services: a necessary Pepitone, D. F.; Duval, D. component of patient navigation Richter NL, Gorey KM, Haji- Care and Survival of Mexican Jama S, Luginaah IN. American Women with Node Negative Breast Cancer: Historical Cohort Evidence of Health Insurance and Barrio Advantages Rodday AM, Parsons SK, Impact of patient navigation in Snyder F, et al. eliminating economic disparities in cancer care. Rousseau, S. J.; Humiston, S. Patient navigation moderates G.; Yosha, A.; Winters, P. C; emotion and information Loader, S.; Luong, V.; demands of cancer treatment: a Schwartzbauer, B.; Fiscella, qualitative analysis K. Shi, R.; Taylor, H.; McLarty, Effects of payer status on breast J.; Liu, L.; Mills, G.; Burton, cancer survival: a retrospective G. study Shippee, T. P.; Kozhimannil, Health insurance coverage and K. B.; Rowan, K.; Virnig, B. racial disparities in breast A. reconstruction after mastectomy Simon, M. A.; Ragas, D. M.; Perceptions of patient-provider Nonzee, N. J.; Phisuthikul, A. communication in breast and M.; Luu, T. H.; Dong, X. cervical cancer-related care: a qualitative study of low-income English- and Spanish-speaking women Simon, M. A.; Tom, L. S.; Evaluating a bilingual patient Nonzee, N. J.; Murphy, K. navigation program for R.; Endress, R.; Dong, X.; uninsured women with Feinglass, J. abnormal screening tests for breast and cervical cancer: implications for future navigator research Stanley, S.; Arriola, K. J.; Reducing barriers to breast Smith, S.; Hurlbert, M.; cancer care through Avon Ricci, C.; Escoffery, C. patient navigation programs Tannenbaum SL, Koru- Disparities in survival after Sengul T, Miao F, Byrne female breast cancer diagnosis: MM. a population-based study. Virgo, K. S.; Lerro, C. C.; Barriers to breast and colorectal Klabunde, C N.; Earle, C.; cancer survivorship care: Ganz, P. A. perceptions of primary care physicians and medical oncologists in the United States Wang, J. H.; Adams, I. F.; Perceptions, expectations, and Pasick, R J.; Gomez, S. L.; attitudes about communication Allen, L.; Ma, G. X.; Lee, M. with physicians among Chinese X.; Huang, E. American and non-Hispanic white women with early stage breast cancer Weingart SN, Saadeh MG, Process of care failures in breast Simchowitz B, Gandhi TK, cancer diagnosis. Nekhlyudov L, Studdert DM, Puopolo AL, Shulman LN. Wen, K. Y.; Fang, C. Y.; Ma, Breast cancer experience and G.X. survivorship among Asian Americans: a systematic review Wu, A. H.; Gomez, S. L; The California Breast Cancer Vigen, C.; Kwan, M. L.; Survivorship Consortium Keegan, T. H.; Lu, Y.; (CBCSC): prognostic factors Shariff-Marco, S.; Monroe, associated with racial/ethnic K. R.; Kurian, A. W.; Cheng, differences in breast cancer I.; Caan, B. J.; Lee, V. S.; survival Roh, J. M.; Sullivan-Halley, J.; Henderson, B. E.; Bernstein, L.; John, E. M.; Sposto, R. Yang, R L.; Newman, A S.; Trends in immediate breast Lin, I. C.; Reinke, C. E.; reconstruction across insurance Karakousis, G. C.; groups after enactment of breast Czerniecki, B. J.; Wu, L. C; cancer legislation Kelz, R. R. Zafar, SY Financial toxicity of cancer care: it's time to intervene Author Journal Year Adepoju L, Wanjiku S, JAMA Surg 2013 Brown M, et al. American Cancer Society ACS 2015 American Cancer Society ACS CAN 2015 Cancer Action Network Ashing-Giwa, K.; Rosales, Psychooncology 2013 M.; Lai, L.; Weitzel, J. Avalere Health Avalere Report 2015 Bestvina, C. M.; Zullig, L. L.; Future Oncol 2014 Yousuf Zafar, S. Bickell, N. A; Paskett, E. D. Am Soc Clin 2013 Oncol Educ Book Bourdeanu L, Luu T, Baker J Natl Compr 2014 N, Swain-Cabriales S, Chung Canc Netw. CT, Mortimer J, Hurria A, Helton S, Smith D, Ferrell B, Juarez G, Somlo G. Bradley, C. 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Grant SR, Walker GV, International 2015 Koshy M, et al. journal of radiation oncology, biology, physics Gunn, C. M.; Clark J. A.; Health Serv Res 2014 Battaglia, T. A.; Freund, K. M.; Parker, V. A. Haeder SF, Weimer DL, Health Affairs 2015 Mukamel DB. Hahn, E. E.; Ganz, P. A.; J Cancer Surviv 2013 Melisko, M. E.; Pierce, J. P.; von Friederichs-Fitzwater, M.; Lane, K. T.; Hiatt, R A. Haji-Jama S, Gorey KM, Springerplus 2013 Luginaah IN, Balagurusamy MK, Hamm C. Hershman, D. L.; Tsui, J.; J Natl Cancer Inst 2014 Meyer, J.; Glied, S.; Hillyer, G. C; Wright, J. D.; Neugut, A.I. Hershman, D. L.; Tsui, J.; J Clin Oncol 2015 Wright, J. D.; Coromilas, E. J.; Tsai, W. Y.; Neugut, A. L Hutchins, V. A; Samuels, M. J Oncol Pract 2013 B.; Lively, A. M. Jagsi, R.; Pottow, J. A; J Clin Oncol 2014 Griffith, K. A; Bradley, C; Hamilton, A. S.; Graff, J.; Katz, S. J.; Hawley, S. T. Kapoor, A.; Battaglia, T. A; J Health Care 2014 Isabelle, A. P.; Hanchate, A. Poor Underserved D.; Kalish, R. L.; Bak, S.; Mishuris, R G.; Shroff, S. M.; Freund, K. M. Katz, M. L.; Young, G. S.; Womens Health 2014 Reiter, P. L.; Battaglia, T. A.; Issues Wells, K. J.; Sanders, M.; Simon, M.; Dudley, D. J.; Patierno, S. R.; Paskett, E. D. Keegan, T. H.; Kurian, A. Am J Public 2015 W.; Gali, K.; Tao, L.; Health Lichtensztajn, D. Y.; Hershman, D. L.; Habel, L. A.; Caan, B. J.; Gomez, S. L. Kurian, A. W.; Lichtensztajn, Jama 2014 D. Y.; Keegan, T. H.; Leung, R. W.; Shema, S. J.; Hershman, D. L.; Kushi, L. H.; Habel, L. A.; Kolevska, T.; Caan, B. J.; Gomez, S. L. Kurian, A. W.; Lichtensztajn, Jama 2014 D. Y.; Keegan, T. H.; Nelson, D. O.; Clarke, C. A; Gomez, S. L. Lagman, R. A.; Yoo, G. J.; J Relig Health 2014 Levine, E. G.; Donnell, K. A.; Lim, H. R. Lautner, M.; Lin, H.; Shen, JAMA Surg 2015 Y.; Parker, C.; Kuerer, H.; Shaitelman, S.; Babiera, G.; Bedrosian, I. Lillie, S. E.; Janz, N. K.; Oncol Nurs 2014 Friese, C. R.; Graff, J. J.; Forum Schwartz, K.; Hamilton, A. S.; Gay, B. B.; Katz, S. J.; Hawley, S. T. Lim, J. W.; Paek, M. S. Support Care 2013 Cancer Maly, R. C.; Liu,Y.; J Am Board Fam 2013 Diamant, A. L.; Thind, A. Med Maly, R. C.; Liu, Y.; Liang, Cancer 2015 L. J.; Ganz, P. A. Marcus, E. N.; Koru-Sengul, J Immigr Minor 2014 T.; Miao, F.; Yepes, M.; Health Sanders, L. Molina Y, Hohl SD, Ko LK, J Cancer Educ. 2014 Rodriguez EA, Thompson B, Beresford SA Molina, Y.; Silva, A.; Med Care 2015 Rauscher, G. H. Morrow, M.; Li, Y.; JAMA Surg 2014 Alderman, A. K.; Jagsi, R.; Hamilton, A. S.; Graff, J. J.; Hawley, S. T.; Katz, S. J. Ohri, N.; Rapkin, B. D.; Int J Radiat Oncol 2015 Guha, D.; Haynes-Lewis, H.; Biol Phys Guha, C.; Kalnicki, S.; Garg, M. Pan, I. W.; Smith, B. D.; J Natl Cancer Inst 2014 Shih, Y. C. Parikh-Patel A, Morris CR, California Cancer 2015 Martinsen R Kizer KW. Reporting and Epidemiologic Surveillance Program, Institute for Population Health Improvement, University of California Davis. 2015. Parikh, A. R.; Kaplan, C. P.; Breast Cancer Res 2013 Burke, N. J.; Livaudais- Treat Toman, J.; Hwang, E. S.; Karliner, L. S. Parise, C. A.; Caggiano, V. BMC Cancer 2013 Parise, C. A.; Caggiano, V. Cancer Epidemiol 2015 Patel, K. K.; Tran, L. Am Soc Clin 2013 Oncol Educ Book Primeau, S. W.; Freund, K. J Gen Intern Med 2014 M.; Ramachandran, A.; Bak, S. M.; Heeren, T.; Chen, C. A.; Morton, S.; Battaglia, T. A. Ramachandran A, Freund J Womens Health 2015 KM, Bak SM Heeren TC, (Larchmt). Chen CA Battaglia TA. Ramirez, A.; Perez-Stable, Cancer 2014 E.; Penedo, F.; Talavera, G.; Carrillo, J. E.; Fernandez, M.; Holden, A.; Munoz, E.; San Miguel, S.; Gallion, K. Retkin, R.; Antoniadis, D.; Semin Oncol Nurs 2013 Pepitone, D. F.; Duval, D. Richter NL, Gorey KM, Haji- J Immigr Minor 2015 Jama S, Luginaah IN. Health. Rodday AM, Parsons SK, Cancer 2015 Snyder F, et al. Rousseau, S. J.; Humiston, S. Support Care 2014 G.; Yosha, A.; Winters, P. C; Cancer Loader, S.; Luong, V.; Schwartzbauer, B.; Fiscella, K. Shi, R.; Taylor, H.; McLarty, BMC Cancer 2015 J.; Liu, L.; Mills, G.; Burton, G. Shippee, T. P.; Kozhimannil, Womens Health 2014 K. B.; Rowan, K.; Virnig, B. Issues A. Simon, M. A.; Ragas, D. M.; J Community 2013 Nonzee, N. J.; Phisuthikul, A. Health M.; Luu, T. H.; Dong, X. Simon, M. A.; Tom, L. S.; Am J Public 2015 Nonzee, N. J.; Murphy, K. Health R.; Endress, R.; Dong, X.; Feinglass, J. Stanley, S.; Arriola, K. J.; J Public Health 2013 Smith, S.; Hurlbert, M.; Manag Pract Ricci, C.; Escoffery, C. Tannenbaum SL, Koru- Cancer Causes 2013 Sengul T, Miao F, Byrne Control. MM. Virgo, K. S.; Lerro, C. C.; J Clin Oncol 2013 Klabunde, C N.; Earle, C.; Ganz, P. A. Wang, J. H.; Adams, I. F.; Support Care 2013 Pasick, R J.; Gomez, S. L.; Cancer Allen, L.; Ma, G. X.; Lee, M. X.; Huang, E. Weingart SN, Saadeh MG, J Gen Intern Med. 2009 Simchowitz B, Gandhi TK, Nekhlyudov L, Studdert DM, Puopolo AL, Shulman LN. Wen, K. Y.; Fang, C. Y.; Ma, J Cancer Surviv 2014 G.X. Wu, A. H.; Gomez, S. L; Cancer Causes 2013 Vigen, C.; Kwan, M. L.; Control Keegan, T. H.; Lu, Y.; Shariff-Marco, S.; Monroe, K. R.; Kurian, A. W.; Cheng, I.; Caan, B. J.; Lee, V. S.; Roh, J. M.; Sullivan-Halley, J.; Henderson, B. E.; Bernstein, L.; John, E. M.; Sposto, R. Yang, R L.; Newman, A S.; Cancer 2013 Lin, I. C.; Reinke, C. E.; Karakousis, G. C.; Czerniecki, B. J.; Wu, L. C; Kelz, R. R. Zafar, SY MCI J Natl 2016 Cancer Inst Author Level Geography Adepoju L, Wanjiku S, Patient-level, Michigan Brown M, et al. System-level American Cancer Society Patient-level USA American Cancer Society System-level USA Cancer Action Network Ashing-Giwa, K.; Rosales, Patient-level California M.; Lai, L.; Weitzel, J. Avalere Health System-level USA; California Bestvina, C. M.; Zullig, L. L.; Patient-level, USA Yousuf Zafar, S. System-level Bickell, N. A; Paskett, E. D. Patient-level, USA Provider-level, System-level Bourdeanu L, Luu T, Baker Patient-level; California N, Swain-Cabriales S, Chung Provider-level; CT, Mortimer J, Hurria A, System-level Helton S, Smith D, Ferrell B, Juarez G, Somlo G. Bradley, C. J.; Wilk, A Patient-level; Virginia System-level Bradley, C.J. Patient-level USA Brot-Goldberg Z, Chandra Patient-level; USA A, Handel B, Kolstad J. System-level California Cancer Registry Patient-level California California Healthcare System-level California Foundation. California Healthcare System-level California Foundation. California Healthcare System-level California Foundation. Dominick, S. A.; Natarajan, Patient-level California; San L.; Pierce, J. P.; Madanat, Diego H; Madlensky, L. Dowling, E. C; Chawla, N.; Patient-level, USA Forsythe, L. P.; de Moor, J.; System-level McNeel, T.; Rozjabek, H M.; Ekwueme, D. U.; Yabroff, K. R. Dusetzina, S. B.; Muluneh, System-level USA B.; Khan, T.; Richards, K L.; Keating, N. L. Flores, Y. N.; Davidson, P. Patient-level, California L.; Nakazono, T. T.; Residential Carreon, D. C; Mojica, C. neighborhood M.; Bastani, R. Gabitova, G.; Burke, N. J. Patient-level, California Provider-level (Patient Navigation) Gomez SL, Shariff-Marco S, Patient-level, USA DeRouen M, et al. Residential neighborhood Gorey, K. M.; Luginaah, I. System-level California N.; Holowaty, E. J.; Zou, G.; Hamm, C.; Balagurusamy, M. K. Grant SR, Walker GV, Patient-level, USA Koshy M, et al. System-level Gunn, C. M.; Clark J. A.; Patient-level USA Battaglia, T. A.; Freund, K. (Patient M.; Parker, V. A. Navigation) Haeder SF, Weimer DL, System-level California Mukamel DB. Hahn, E. E.; Ganz, P. A.; Provider-level California Melisko, M. E.; Pierce, J. P.; (perceptions) von Friederichs-Fitzwater, M.; Lane, K. T.; Hiatt, R A. Haji-Jama S, Gorey KM, Patient-level, California Luginaah IN, Balagurusamy Residential MK, Hamm C. neighborhood Hershman, D. L.; Tsui, J.; Patient-level USA Meyer, J.; Glied, S.; Hillyer, G. C; Wright, J. D.; Neugut, A.I. Hershman, D. L.; Tsui, J.; Patient-level USA; Wright, J. D.; Coromilas, E. black/white J.; Tsai, W. Y.; Neugut, A. L comparison Hutchins, V. A; Samuels, M. Patient-level, USA B.; Lively, A. M. Provider-level, System-level Jagsi, R.; Pottow, J. A; Patient-level Los Angeles, Griffith, K. A; Bradley, C; Detroit Hamilton, A. S.; Graff, J.; Katz, S. J.; Hawley, S. T. Kapoor, A.; Battaglia, T. A; Patient-level Massachusetts Isabelle, A. P.; Hanchate, A. (Patient D.; Kalish, R. L.; Bak, S.; Navigation) Mishuris, R G.; Shroff, S. M.; Freund, K. M. Katz, M. L.; Young, G. S.; Patient-level USA Reiter, P. L.; Battaglia, T. A.; (Patient Wells, K. J.; Sanders, M.; Navigation) Simon, M.; Dudley, D. J.; Patierno, S. R.; Paskett, E. D. Keegan, T. H.; Kurian, A. Patient-level, California; W.; Gali, K.; Tao, L.; Residential Northern Lichtensztajn, D. Y.; neighborhood Hershman, D. L.; Habel, L. A.; Caan, B. J.; Gomez, S. L. Kurian, A. W.; Lichtensztajn, Patient-level California; D. Y.; Keegan, T. H.; Leung, Northern R. W.; Shema, S. J.; Hershman, D. L.; Kushi, L. H.; Habel, L. A.; Kolevska, T.; Caan, B. J.; Gomez, S. L. Kurian, A. W.; Lichtensztajn, Patient-level California D. Y.; Keegan, T. H.; Nelson, D. O.; Clarke, C. A; Gomez, S. L. Lagman, R. A.; Yoo, G. J.; Patient-level California Levine, E. G.; Donnell, K. A.; Lim, H. R. Lautner, M.; Lin, H.; Shen, Patient-level USA Y.; Parker, C.; Kuerer, H.; Shaitelman, S.; Babiera, G.; Bedrosian, I. Lillie, S. E.; Janz, N. K.; Patient-level California; Los Friese, C. R.; Graff, J. J.; Angeles Schwartz, K.; Hamilton, A. S.; Gay, B. B.; Katz, S. J.; Hawley, S. T. Lim, J. W.; Paek, M. S. Patient-level California Maly, R. C.; Liu,Y.; Provider-level California Diamant, A. L.; Thind, A. Maly, R. C.; Liu, Y.; Liang, Patient-level, California L. J.; Ganz, P. A. Provider-level Marcus, E. N.; Koru-Sengul, Patient-level; USA T.; Miao, F.; Yepes, M.; System-level Sanders, L. Molina Y, Hohl SD, Ko LK, Patient-level USA Rodriguez EA, Thompson B, Beresford SA Molina, Y.; Silva, A.; Patient-level Chicago Rauscher, G. H. Morrow, M.; Li, Y.; Patient-level California: Alderman, A. K.; Jagsi, R.; SEER; Los Hamilton, A. S.; Graff, J. J.; Angeles Hawley, S. T.; Katz, S. J. Ohri, N.; Rapkin, B. D.; Patient-level Unknown Guha, D.; Haynes-Lewis, H.; Guha, C.; Kalnicki, S.; Garg, M. Pan, I. W.; Smith, B. D.; Patient-level USA Shih, Y. C. Parikh-Patel A, Morris CR, Patient-level, California Martinsen R Kizer KW. System-level Parikh, A. R.; Kaplan, C. P.; Patient-level, California Burke, N. J.; Livaudais- Provider-level Toman, J.; Hwang, E. S.; Karliner, L. S. Parise, C. A.; Caggiano, V. Patient-level California Parise, C. A.; Caggiano, V. Patient-level, California System-level Patel, K. K.; Tran, L. Patient-level, USA Provider-level, System-level Primeau, S. W.; Freund, K. Patient-level Massachusetts M.; Ramachandran, A.; Bak, (Patient S. M.; Heeren, T.; Chen, C. Navigation) A.; Morton, S.; Battaglia, T. A. Ramachandran A, Freund Patient-level Boston, MA KM, Bak SM Heeren TC, (Patient Chen CA Battaglia TA. Navigation) Ramirez, A.; Perez-Stable, Patient-level 6 US cities E.; Penedo, F.; Talavera, G.; (Patient Carrillo, J. E.; Fernandez, Navigation) M.; Holden, A.; Munoz, E.; San Miguel, S.; Gallion, K. Retkin, R.; Antoniadis, D.; Patient-level USA Pepitone, D. F.; Duval, D. Richter NL, Gorey KM, Haji- Patient-level, California Jama S, Luginaah IN. Residential neighborhood Rodday AM, Parsons SK, Patient-level USA Snyder F, et al. Rousseau, S. J.; Humiston, S. Patient-level Unknown G.; Yosha, A.; Winters, P. C; (Patient Loader, S.; Luong, V.; Navigation) Schwartzbauer, B.; Fiscella, K. Shi, R.; Taylor, H.; McLarty, System-level USA J.; Liu, L.; Mills, G.; Burton, G. Shippee, T. P.; Kozhimannil, System-level USA K. B.; Rowan, K.; Virnig, B. A. Simon, M. A.; Ragas, D. M.; Patient-level; Chicago, IL Nonzee, N. J.; Phisuthikul, A. Provider-level M.; Luu, T. H.; Dong, X. Simon, M. A.; Tom, L. S.; Patient-level Illinois Nonzee, N. J.; Murphy, K. R.; Endress, R.; Dong, X.; Feinglass, J. Stanley, S.; Arriola, K. J.; System-level USA Smith, S.; Hurlbert, M.; Ricci, C.; Escoffery, C. Tannenbaum SL, Koru- Patient-level; Florida Sengul T, Miao F, Byrne Provider-level MM. Virgo, K. S.; Lerro, C. C.; Provider-level USA Klabunde, C N.; Earle, C.; (perceptions) Ganz, P. A. Wang, J. H.; Adams, I. F.; Patient-level, California; Pasick, R J.; Gomez, S. L.; Provider-level Northern Allen, L.; Ma, G. X.; Lee, M. X.; Huang, E. Weingart SN, Saadeh MG, System-level Boston, MA Simchowitz B, Gandhi TK, Nekhlyudov L, Studdert DM, Puopolo AL, Shulman LN. Wen, K. Y.; Fang, C. Y.; Ma, Patient-level USA G.X. Wu, A. H.; Gomez, S. L; Patient-level California Vigen, C.; Kwan, M. L.; Keegan, T. H.; Lu, Y.; Shariff-Marco, S.; Monroe, K. R.; Kurian, A. W.; Cheng, I.; Caan, B. J.; Lee, V. S.; Roh, J. M.; Sullivan-Halley, J.; Henderson, B. E.; Bernstein, L.; John, E. M.; Sposto, R. Yang, R L.; Newman, A S.; System-level USA Lin, I. C.; Reinke, C. E.; Karakousis, G. C.; Czerniecki, B. J.; Wu, L. C; Kelz, R. R. Zafar, SY System-level USA
Appendix B Frequency of Coded Response
Overall, there were 24 codes organized into five main categories.
Number of Category Code Informants that mentioned System Barriers Insurance (Approvals) 3 Continuity of Care 2 Access/Narrow Network 7 (including Timely Access) Navigation Navigation/Provide a Path 7 (Need for and Benefits of) Availability of Information 8 Provider Knowledge 2 Decision Making 5 Patient Follow-Through 1 Support/Stability 7 Fear/Anxiety (about 6 treatment, support) Cost Cost of Care 10 Transportation 4 Homelessness 1 Financial Assistance 3 (Need for) Work Constraints 3 Insurance (Status) 10 Culture/Individual Characteristics Stigma 2 Culturally Appropriate 2 Services and Treatments Myths and Misconceptions 3 Rural/Urban 3 Language--impact Provider Communications 5 (Understanding the doctor, staff, materials) Language barrier to 4 information/support services Health Literacy 4 (understanding condition, treatment options) Interpreter Availability 4 Number of Category mentions System Barriers 6 4 11 Navigation 23 10 4 5 1 9 6 Cost 10 5 1 3 3 20 Culture/Individual Characteristics 4 2 3 3 Language--impact 10 6 4 4
Appendix C Social Media Search
# Search for "breast cancer"
# Search for "breast cancer" AND California
* Google search: "breast cancer" "California" "treatment" "blog" (1M results)
Breast Cancer Support Sites--Webpage and Facebook, Twitter Sites
* Susan G. Komen
# Stories of inspiration http://ww5.komen.org/Storiesoflnspiration.html
# Message Boards: Forum [Treatment] [Dealing with Insurance, Employment and Disability]
https://apps.komen.org/Forums/tt.aspx?forumid=68 American Cancer Society
* Pink Ribbon?
* What Next (recommended by KP as online resource: https://www.whatnext.com/)
# Questions: Search term: insurance
# Filters: Cancer/Breast Cancer/300 miles of 94040: 16 results
* https://www.whatnext.com/search/questions?commit=Search&search[filters] [class] =Question&sear ch[filters][condition_path]=45&search[query]=insurance&utf8=%E2%9C%93
* Breast Cancer Action (SF based advocacy org with social justice mission, advocates basically against money going to Pink Ribbon)
# Blog: http://www.bcaction.org/blog/
# Twitter: @BCAction
# Stories of Help and Hope
* http://www.cancercare.org/stories (Not sure if stories are good, not specific to California and usually more positive?)
* American Cancer Society
# Cancer Survivors Network http://csn.cancer.org/?_ga=1.257476808.25899981.1456465484
* Discussion Boards: Search "insurance", Limit to 2014-2015
# MyLifeLine.org- cancer social networking
# Breast Cancer Stories of Hope
# "breast cancer" "California" - limited to posts in the past year
# Discussion Boards:
* Tests, Treatments and Side Effects: Help Me Get Through Treatment
* Search "California," limit to past 2 years
* Day-to-Day Matters: Employment, Insurance, and Other Financial Issues https://community.breastcancer.org/forum/113
* Search "California", limit to past 2 years
* Yahoo! Answers
# 10/22/15 #JACR Tweet Chat about imaging during breast cancer diagnosis, treatment and follow-up
# 12/2/15 #LBBCchat Now What? Making Treatment Decisions After Diagnosis
# 10/15/15 #LBBCchat Breast Reconstruction
# 6/25/14 #LBBCchat Coping with the Financial Impact of Breast Cancer
Appendix D Legislative Scan Approach
Using http://leginfo.legislature.ca.gov, bills were first examined by searching "breast cancer" and then scanned for themes related to addressing barriers to care. In a second stage, we then searched for bills that addressed barriers to care that were not specific to breast cancer: care integration, patient navigation, health plan network adequacy, Medi-Cal reimbursement and access, cost-sharing, costs of drugs, costs of nonmedical care, and language and linguistic access. We screened bill titles and text to select legislation that was specific to health care systems, delivery and coverage.
California Legislation Related to Breast Cancer, 2013-2016 Bill Number Year Title AB-1795 2016 Health care programs: cancer ACR-68 2015 Breast Cancer Awareness and Prevention Month. AB-1396 2015 Public health finance SBX2-14 2015 Tobacco: electronic cigarettes: taxes: managed care organization provider tax: in-home supportive services SB-69 2015 Budget Act of 2015 AB-103 2015 Budget Act of 2015 AB-93 2015 Budget Act of 2015 AB-1598 2016 Budget Act of 2016 SB-825 2016 Budget Act of 2016 AB-94 2015 Health SB-75 2015 Amendments to Professional code AB-731 2015 Maintenance of the codes AB-49 2014 License plates: breast cancer awareness AB-657 2013 Women's health AB-1286 2013 Personal income tax: voluntary contributions: California Breast Cancer Research Fund AB-219 2013 Health care coverage: cancer treatment SB-768 2013 Cigarette and tobacco products taxes: California Tobacco Tax Act of 2014 AB-1278 2013 Integrative cancer treatment AB-110 2013 Budget Act of 2013 AB-73 2013 2013-14 Budget SB-65 2013 2013-14 Budget AB-1457 2014 Budget Act of 2014 SB-851 2014 Budget Act of 2014 SB-852 2014 Budget Act of 2014 SB-1304 2014 Maintenance of the codes AB-1219 2015 California Cancer Task Force SJR-19 2015 Women's reproductive health SB-804 2015 Public health SB-1426 2014 Breast and Cervical Cancer Treatment Program ABX-1-1 2013 Medi-Cal: eligibility SB-77 2013 Health AB-82 2013 Health SB-1465 2014 Health Bill Number Content AB-1795 Extends the time limit for the Breast and Cervical Cancer Treatment Program from a set number months (18 for breast cancer) to the time needed to complete treatment ACR-68 Designate October as Breast Cancer Awareness Month AB-1396 Transfer funds from California Tobacco Tax Act of 2015 Fund to other funds that currently receive revenue from tobacco taxes, including the Breast Cancer Fund, that are expected to decline under the additional new taxes imposed by the California Tobacco Tax Act of 2015, due to decreases in tobacco consumption SBX2-14 Include e-cigarettes in tobacco taxes, continue to allocate revenues to same funds including Breast Cancer Funds SB-69 Allocating funds for Breast Cancer Control Account AB-103 Allocating funds for Breast Cancer Fund, Breast Cancer Control, and Breast Cancer Research AB-93 Allocating funds for Breast Cancer Fund AB-1598 Allocating funds for Breast Cancer Fund SB-825 Allocating funds for Breast Cancer Fund AB-94 Continuation of breast and cervical cancer early detection program SB-75 Continuation of breast and cervical cancer early detection program AB-731 Payment parity of breast and cervical cancer early detection program with Medi-Cal, breast cancer license plates AB-49 DHCS sponsor breast cancer awareness license plates, funds to go to Breast Cancer Control Account in Breast Cancer Fund AB-657 Revises guidance to DPH on literature it produces on breast cancer AB-1286 Allows taxpayers to designate contribution to Breast Cancer Research Fund AB-219 Limits co-pays and co-insurance to $200 per prescription for oral anticancer medications SB-768 Transfer funds from California Tobacco Tax Act of 2014 Fund to other funds that currently receive revenue from tobacco taxes, including the Breast Cancer Fund, that are expected to decline under the additional new taxes imposed by the California Tobacco Tax Act of 2014, due to decreases in tobacco consumption AB-1278 Sets requirements for providers offering "integrative" cancer treatment, i.e. alternative or complementary treatment, of cancers; repeals one code on unprofessional conduct regarding breast cancer informed consent? AB-110 Allocating funds for Breast Cancer Fund, Breast Cancer Control, and Breast Cancer Research AB-73 Allocating funds for Breast Cancer Fund, Breast Cancer Control, and Breast Cancer Research SB-65 Allocating funds for Breast Cancer Fund, Breast Cancer Control, and Breast Cancer Research AB-1457 Allocating funds for Breast Cancer Fund, Breast Cancer Control, and Breast Cancer Research SB-851 Allocating funds for Breast Cancer Fund, Breast Cancer Control, and Breast Cancer Research SB-852 Allocating funds for Breast Cancer Fund, Breast Cancer Control, and Breast Cancer Research SB-1304 Regulations on independent review for worker's compensation (cancer is mentioned in the case of consulting with NCI); sets minimum contribution levels for Breast Cancer Research Fund; regulations from Health and Safety code around exposures to chemicals known to cause cancer AB-1219 Requires a joint task force to coordinate DHCS Breast and Cervical Cancer Treatment Program with DPH screening activities SJR-19 Statement of support for Planned Parenthood SB-804 Requires DHCS to report to legislature quarterly on caseload, expenditures, program monitoring data for the Every Woman Counts Program (breast and cervical cancer early detection and screening) SB-1426 Revises Health and Safety Code to read that provider eligibility determined by CMS (rather than HCFA) ABX-1-1 Exempts women in Breast and Cervical Cancer Treatment Program from semiannual reporting requirements for eligibility determination: Changing Medi-Cal determinations from semiannually to annually but requiring semiannual reports SB-77 Requires DHCS to report on Every Woman Counts; requires cosmetics manufacturers to report chemical risks of cancer AB-82 Requires DHCS to report on Every Woman Counts; requires cosmetics manufacturers to report chemical risks of cancer SB-1465 Exempts breast and cervical cancer treatment from 10% Medi-Cal reimbursement reduction Bill Number Status (as of 5/11/2016) AB-1795 In Review: Assembly Appropriations ACR-68 Passed AB-1396 Not passed SBX2-14 Not passed SB-69 Not passed AB-103 Not passed AB-93 Passed AB-1598 In review: Assembly Budget SB-825 In review: Sen Budget and Fiscal Review AB-94 Passed SB-75 Passed AB-731 Passed AB-49 Passed AB-657 Not passed AB-1286 Passed AB-219 Passed SB-768 Not passed AB-1278 Not passed AB-110 Passed AB-73 Not passed SB-65 Not passed AB-1457 Not passed SB-851 Not passed SB-852 Passed SB-1304 Passed AB-1219 Not passed SJR-19 Passed SB-804 Passed SB-1426 Not passed ABX-1-1 Passed SB-77 Not passed AB-82 Passed SB-1465 Passed
Appendix E Legislative Scan Detailed Findings
The Fragmented Health System We found no legislation specifically addressing the challenges of receiving breast cancer care across a fragmented set of providers and services.
AB-1568 (2016) and SB-815 (2016) propose to establish the PRIME (Public Hospital Redesign and Incentives in Medi-Cal) program, which would offer payment incentives to safety net hospitals to redesign systems to better integrate and coordinate services. Both bills are currently under review by the Committee on Appropriations. If passed, the PRIME program could serve as a vehicle for a health system to develop a coordinated path of breast cancer treatment for low-income women.
Other To address the lack of access to clinical trials among minority and other underserved populations, AB-1060 (2015, vetoed) and AB-1823 (2016) have proposed the creation of a Cancer Clinical Trials Program that would be administered by the University of California. The program would offer grants to providers, community-based organizations, or other services such as patient navigator programs, to increase patient access to clinical trials. AB-1823 is currently under review by the Committee on Appropriations.
We found no legislation that addressed patient navigation services for cancer care.
AB-94 and SB-75 (2015, passed) were both omnibus health bills that, among other measures, proposed the State Department of Public Health create the Pre-Exposure Prophylaxis (PreP) Navigator Services Program for communities and populations at high risk for HIV infection. The program would award grants to community-based organizations or local health departments. We also found one example of legislation that aims to provide information to assist enrollees in navigating health care. SB-571 (2015, not passed) proposed to create CalCareNet, website to assist with navigation of long-term care services.
These bills offer examples of how the state could support patient navigator services for breast cancer care. We found no legislation that mandated insurance coverage for patient navigation services for clinical or supportive care.
Narrow Provider Networks We found no legislation that addressed network adequacy specific to breast cancer care, or cancer care in general.
We found multiple examples of legislation addressing network adequacy. SB-964 (2014, passed) required the Department of Managed Health Care to establish health plan standards for timeliness of care and network adequacy, and required plans to submit reports annually on network adequacy. SB-137 (2015, passed) requires health plans to publish updated provider directories, both print and online, with provider location and acceptance of new patients, and languages spoken by provider and staff.
We found one example in which legislation addressed network adequacy for a single type of care/treatment. Both AB-796 and SB-1034 (2016) required health plan network adequacy for autism service providers. Both bills are in review (Committees on Health and Appropriations).
Public Programs We found two types of legislation that addressed Medi-Cal provider reimbursement. First, SB-243 (2015, not passed) proposed an increase of Medi-Cal hospital rates to 16% and physician rates to parity with Medicare reimbursement. Second, omnibus health bills (AB-94, SB-75) contained provisions to exempt breast and cervical cancer treatment from cuts in Medi-Cal provider reimbursement. Thus, Medi-Cal reimbursement rates while inadequate, have neither been increased nor decreased for breast cancer care.
We identified one bill, AB-209 (2013, not passed), that would have required the Department of Health Care Services to develop and implement a plan to monitor quality, access and utilization in Medi-Cal managed care plans. This is the only example we could identify of legislation that addressed barriers around lack of providers who accept Medi-Cal and the quality of care provided.
In regards to eligibility and authorization for Medi-Cal, SB-1005 (2015, not passed) proposed that all individuals who would otherwise qualify for full-scope Medi-Cal benefits, were it not for their immigration status, to be eligible for MediCal. SB-1005 also proposed that all eligible individuals may participate in Covered California as well.
AB-94 and SB-75 also contained provisions to require that state breast and cervical cancer screening programs, i.e. Every Woman Counts, provide enrollees with information on applying for insurance coverage.
Out of Pocket Costs--Cost-Sharing and High Deductible Health Plans We found one example of legislation that was specific to out-of-pocket cancer costs, AB-219. This bill proposed that co-payments and co-insurance be capped at $200 per 30-day prescription for oral anti-cancer medications, with increases tied to the Consumer Price Index. AB-219 was passed and signed into law in 2013.
We found multiple examples of legislation that addressed general out-of-pocket costs for enrollees. SB-639 (2013, passed) set limits for deductibles and out-of-pocket maximums for small group health plans. Small group bronze plans were exempted from these limits if they would render the plans unable to meet actuarial requirements. The deductibles under this legislation ($2000 per individual or $4000 for family) are considerably lower than the Covered California plans examined in this report, although the out-of-pocket maximum costs are similar ($6350 for individual/$12,700 family). AB-1305 (2015, passed) set limits on out-of-pocket maximums for individuals within families. SB-1176 (2014, not passed) would have required to health plans to monitor out-of-pocket spending for enrollees and reimburse payments over the out-of-pocket maximum within five days.
AB-533 (2015, not passed), would have prohibited an out-of-network provider from charging an enrollee for cost-sharing in excess of in-network cost-sharing. In the case of breast cancer care, this is salient for women with Covered California plans in rural areas who have difficulty finding local in-network specialists such as surgeons, oncologists and radiation oncologists. Enrollees are required to pay any excess amounts charged by out-of-network providers, and these costs are not subject to the out-of-pocket maximum.
We found multiple examples of legislation that addressed the cost of prescription drugs. AB-2436 (2016, passed) requires health plans to provide information on enrollees' share of cost for prescription drugs. AB 2144 (2016, in committee) SB-715 (2015, not passed) would have authorized (not required) health plans to provide coverage for investigational drugs. AB-1917 (2014, not passed) would have limited cost-sharing a single prescription drugs to 1/12 the annual out-of-pocket limit.
We found one example of legislation that addressed out-of-pocket costs specific to a health condition. AB-1462 (2014, not passed) included a provision that authorized the State Department of Public Health to subsidize costs to health plans, including copayments, deductibles and premiums, for HIV treatment if such a program would lower overall costs to the state. A similar case could be made for breast cancer, if cost-sharing burdens lead to delayed or missed care.
Costs Beyond Care We found no legislation that addressed the numerous costs that patients experience outside of direct medical care for breast cancer.
AB-1568 (2016) and SB-815 (2016) proposed the Whole Patient pilot as part of a larger Medi-Cal demonstration project bill. The pilot would allow providers to receive capitated payment for a range of health, behavioral and social services; for breast cancer patients, such a program could provide coverage for needs such as transportation, meals, childcare and financial assistance. Both bills are under review by the Committee on Appropriations.
Individual and Cultural Characteristics
We found no legislation that addressed Provider--Patient Interactions, Cultural Barriers, or Fear and Stigma, specific to breast cancer or applicable to breast cancer patients.
AB-1263 (2013, vetoed) and AB-2325 (2014, vetoed) would have required the Department of Health Care Services to establish CommuniCal, a program to provide and reimburse for medical interpreter services.
We thank the California Pan Ethnic Health Network, the California Health Collaborative, and Ms. Christabel Cheung for their contributions to our key informant sampling frame and for their social media leads. We are grateful to Ms. Hala Douglas for her expert logistics coordination in scheduling meetings and interviews. Finally, we thank all of the participants of our study for their valuable insights in improving access to breast cancer care in California
California Breast Cancer Research Program.
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NINEZ A. PONCE
firstname.lastname@example.org Department of Health Policy and Management, Center for Health Policy Research & Center for Global and Immigrant Health, Fielding School of Public Health, The University of California, Los Angeles (corresponding author)
email@example.com Fielding School of Public Health, The University of California, Los Angeles
firstname.lastname@example.org Center for Health Policy Research, The University of California, Los Angeles
email@example.com Center for Health Policy Research, The University of California, Los Angeles
firstname.lastname@example.org Department of Public Health Sciences, The University of California, Davis
How to cite: Ponce, Ninez A., Beth Glenn, Riti Shimkhada, A.J. Scheitler, Michelle Ko (2017). "An Examination of the Barriers to Breast Cancer Care in California," American Journal of Medical Research 4(2): 73-126.
Received 22 February 2017 * Received in revised form 1 June 2017
Accepted 2 June 2017 * Available online 22 June 2017
Caption: Figure 1 Conceptual Framework of Breast Cancer Barriers for Diagnosis and Treatment
Caption: Figure 2 Major Themes on Barriers to Cancer Care
Table 1 Most common barrier types in the peer-reviewed, non-peer reviewed literature and social media Barrier Type Keyword Peer-reviewed literature Health Navigation System/Navigation Low resourced facility Provider-patient communication Insurance Provider networks Insurance type Out-of-pocket costs (OOP) Rx costs Payment model Continuity of coverage Costs Costs of care (general) Financial distress/bankruptcy Work loss Child care Transportation Travel distance Legal support Scheduling Individual/Cultural Socioeconomic & race/ethnicity Cultural preferences Family support Information/Health literacy Safety--disadvantage Decision making support Emotional support Discrimination Distrust Community/Neighborhood disadvantage Beliefs/fear Comorbidities Language Language Barrier Type Non-peer reviewed/ Key Informant social media interviews Health System/Navigation Insurance Costs Individual/Cultural Language Legend: Most often mentioned Medium Least or No mention
Please Note: Illustration(s) are not available due to copyright restrictions.
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|Author:||Ponce, Ninez A.; Glenn, Beth; Shimkhada, Riti; Scheitler, A.J.; Ko, Michelle|
|Publication:||American Journal of Medical Research|
|Date:||Oct 1, 2017|
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