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AN EXAMINATION OF THE BARRIERS TO BREAST CANCER CARE IN CALIFORNIA.

Introduction

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.

Conceptual Framework

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.

Technical Approach

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.

Findings

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.

Themes

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."

Insurance

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."

Cost

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

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).

Findings

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.

Notably,

* 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.

Conclusion

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. P.; de Moor, J.;      illness in cancer survivors with
McNeel, T.; Rozjabek, H M.;        and without other chronic
Ekwueme, D. U.; Yabroff, K.        conditions
R.
Dusetzina, S. B.; Muluneh,         Obstacles to affordable cancer
B.; Khan, T.; Richards, K          treatments
L.; Keating, N. L.
Flores, Y. N.; Davidson, P.        Neighborhood socio-economic
L.; Nakazono, T. T.;               disadvantage and race/ethnicity
Carreon, D. C; Mojica, C.          as predictors of breast cancer
M.; Bastani, R.                    stage at diagnosis
Gabitova, G.; Burke, N. J.         Improving healthcare
                                   empowerment through breast
                                   cancer patient navigation: a
                                   mixed methods evaluation in a
                                   safety-net setting

Gomez SL, Shariff-Marco S,         The impact of neighborhood
DeRouen M, et al.                  social and built environment
                                   factors across the cancer
                                   continuum: Current research,
                                   methodological considerations,
                                   and future directions.
Gorey, K. M.; Luginaah, I.         Mediation of the effects of
N.; Holowaty, E. J.; Zou, G.;      living in extremely poor
Hamm, C.; Balagurusamy,            neighborhoods by health
M. K.                              insurance: breast cancer care
                                   and survival in California, 1996
                                   to 2011
Grant SR, Walker GV,               Impact of Insurance Status on
Koshy M, et al.                    Radiation Treatment Modality
                                   Selection Among Potential
                                   Candidates for Prostate, Breast,
                                   or Gynecologic Brachytherapy.
Gunn, C. M.; Clark J. A.;          An assessment of patient
Battaglia, T. A.; Freund, K.       navigator activities in breast
M.; Parker, V. A.                  cancer patient navigation
                                   programs using a nine-principle
                                   framework
Haeder SF, Weimer DL,              California hospital networks are
Mukamel DB.                        narrower in Marketplace than in
                                   commercial plans, but access
                                   and quality are similar.
Hahn, E. E.; Ganz, P. A.;          Provider perceptions and
Melisko, M. E.; Pierce, J. P.;     expectations of breast cancer
von Friederichs-Fitzwater,         posttreatment care: a University
M.; Lane, K. T.; Hiatt, R A.       of California Athena Breast
                                   Health Network project
Haji-Jama S, Gorey KM,             Health insurance mediation of
Luginaah IN, Balagurusamy          the Mexican American non-Hispanic
MK, Hamm C.                        white disparity on
                                   early breast cancer diagnosis
Hershman, D. L.; Tsui, J.;         The change from brand-name to
Meyer, J.; Glied, S.; Hillyer,     generic aromatase inhibitors
G. C; Wright, J. D.; Neugut,       and hormone therapy adherence
A.I.                               for early-stage breast cancer
Hershman, D. L.; Tsui, J.;         Household net worth, racial
Wright, J. D.; Coromilas, E.       disparities, and hormonal
J.; Tsai, W. Y.; Neugut, A. L      therapy adherence among
                                   women with early-stage breast
                                   cancer
Hutchins, V. A; Samuels, M.        Analyzing the affordable care
B.; Lively, A. M.                  act: essential health benefits and
                                   implications for oncology
Jagsi, R.; Pottow, J. A;           Long-term financial burden of
Griffith, K. A; Bradley, C;        breast cancer: experiences of a
Hamilton, A. S.; Graff, J.;        diverse cohort of survivors
Katz, S. J.; Hawley, S. T.         identified through population-based
                                   registries
Kapoor, A.; Battaglia, T. A;       The impact of insurance
Isabelle, A. P.; Hanchate, A.      coverage during insurance
D.; Kalish, R. L.; Bak, S.;        reform on diagnostic resolution
Mishuris, R G.; Shroff, S.         of cancer screening
M.; Freund, K. M.                  abnormalities
Katz, M. L.; Young, G. S.;         Barriers reported among
Reiter, P. L.; Battaglia, T. A.;   patients with breast and cervical
Wells, K. J.; Sanders, M.;         abnormalities in the patient
Simon, M.; Dudley, D. J.;          navigation research program:
Patierno, S. R.; Paskett, E. D.    impact on timely care
Keegan, T. H.; Kurian, A.          Racial/ethnic and
W.; Gali, K.; Tao, L.;             socioeconomic differences in
Lichtensztajn, D. Y.;              short-term breast cancer
Hershman, D. L.; Habel, L.         survival among women in an
A.; Caan, B. J.; Gomez, S. L.      integrated health system
Kurian, A. W.; Lichtensztajn,      Patterns and predictors of breast
D. Y.; Keegan, T. H.; Leung,       cancer chemotherapy use in
R. W.; Shema, S. J.;               Kaiser Permanente Northern
Hershman, D. L.; Kushi, L.         California, 2004-2007
H.; Habel, L. A.; Kolevska,
T.; Caan, B. J.; Gomez, S. L.
Kurian, A. W.; Lichtensztajn,      Use of and mortality after
D. Y.; Keegan, T. H.; Nelson,      bilateral mastectomy compared
D. O.; Clarke, C. A; Gomez,        with other surgical treatments
S. L.                              for breast cancer in California,
                                   1998-2011
Lagman, R. A.; Yoo, G. J.;         Leaving it to God religion and
Levine, E. G.; Donnell, K. A.;     spirituality among Filipina
Lim, H. R.                         immigrant breast cancer survivors
Lautner, M.; Lin, H.; Shen,        Disparities in the Use of
Y.; Parker, C.; Kuerer, H.;        Breast-Conserving Therapy Among
Shaitelman, S.; Babiera, G.;       Patients With Early-Stage
Bedrosian, I.                      Breast Cancer
Lillie, S. E.; Janz, N. K.;        Racial and ethnic variation in
Friese, C. R.; Graff, J. J.;       partner perspectives about the
Schwartz, K.; Hamilton, A.         breast cancer treatment
S.; Gay, B. B.; Katz, S. J.;       decision-making experience
Hawley, S. T.
Lim, J. W.; Paek, M. S.            The relationship between
                                   communication and health-related
                                   quality of life in
                                   survivorship care for
                                   Chinese-American and Korean-American
                                   breast cancer survivors
Maly, R. C.; Liu,Y.;               The impact of primary care
Diamant, A. L.; Thind, A.          physicians on follow-up care of
                                   underserved breast cancer
                                   survivors
Maly, R. C.; Liu, Y.; Liang,       Quality of life over 5 years after
L. J.; Ganz, P. A.                 a breast cancer diagnosis among
                                   low-income women: effects of
                                   race/ethnicity and patient-physician
                                   communication
Marcus, E. N.; Koru-Sengul,        How do breast imaging centers
T.; Miao, F.; Yepes, M.;           communicate results to women
Sanders, L.                        with limited English proficiency
                                   and other barriers to care?
Molina Y, Hohl SD, Ko LK,          Understanding the patient-provider
Rodriguez EA, Thompson B,          communication needs
Beresford SA                       and experiences of Latina and
                                   non-Latina White women
                                   following an abnormal
                                   mammogram.
Molina, Y.; Silva, A.;             Racial/Ethnic Disparities in
Rauscher, G. H.                    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. J.; Wilk, A            J Cancer Surviv     2014



Bradley, C.J.                      J Cancer Surviv     2014


Brot-Goldberg Z, Chandra           NBER Working        2015
A, Handel B, Kolstad J.            Paper No 21632
                                   2015.

California Cancer Registry         CCRC                2015

California Healthcare              CHCF                2015
Foundation.

California Healthcare              CHCF                2013
Foundation.


California Healthcare              CHCF                2015
Foundation.

Dominick, S. A.; Natarajan,        Support Care        2014
L.; Pierce, J. P.; Madanat,        Cancer
H; Madlensky, L.

Dowling, E. C; Chawla, N.;         Cancer              2013
Forsythe, L. P.; de Moor, J.;
McNeel, T.; Rozjabek, H M.;
Ekwueme, D. U.; Yabroff, K.
R.
Dusetzina, S. B.; Muluneh,         N C Med J           2014
B.; Khan, T.; Richards, K
L.; Keating, N. L.
Flores, Y. N.; Davidson, P.        BMC Public          2013
L.; Nakazono, T. T.;               Health
Carreon, D. C; Mojica, C.
M.; Bastani, R.
Gabitova, G.; Burke, N. J.         BMC Health Serv     2014
                                   Res




Gomez SL, Shariff-Marco S,         Cancer              2015
DeRouen M, et al.




Gorey, K. M.; Luginaah, I.         Int J Equity        2013
N.; Holowaty, E. J.; Zou, G.;      Health
Hamm, C.; Balagurusamy,
M. K.


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

Blogging Platforms

* Medium

# Search for "breast cancer"

# https://medium.com/search?q=breast%20cancer

# Search for "breast cancer" AND California

* https://medium.com/search?q=%22breast%20cancer%22%20AND%20California

* Tumblr

* Wordpress

* Blogger

* 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

* Cancercare

# 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

* http://csn.cancer.org/forum/127/search?page=32&body=insurance&title=

# MyLifeLine.org- cancer social networking

# Breast Cancer Stories of Hope

http://www.cancer.org/treatment/survivorshipduringandaftertreatment/storiesofhope/storiesbytopic/index?topic=Breast%20Cancer

Discussion Forums

* Reddit

# "breast cancer" "California" - limited to posts in the past year

* Breastcancer.org

# 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

* AskMetaFilter

* Yahoo! Answers

Twitter chats

* (@LivingBeyondBC)

# 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

Health System

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.

Navigation

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.

Insurance

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.

Cost

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.

Language

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.

Acknowledgments

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

Funding

California Breast Cancer Research Program.

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NINEZ A. PONCE

nponce@ucla.edu 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)

BETH GLENN

bglenn@ucla.edu Fielding School of Public Health, The University of California, Los Angeles

RITI SHIMKHADA

riti@ucla.edu Center for Health Policy Research, The University of California, Los Angeles

A.J. SCHEITLER

ajscheitler@ucla.edu Center for Health Policy Research, The University of California, Los Angeles

MICHELLE KO

mijko@ucdavis.edu 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


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Author:Ponce, Ninez A.; Glenn, Beth; Shimkhada, Riti; Scheitler, A.J.; Ko, Michelle
Publication:American Journal of Medical Research
Article Type:Report
Geographic Code:1U9CA
Date:Oct 1, 2017
Words:20768
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