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Peacheretal.SpringerPlus2013,2:15 http://www.springerplus.com/content/2/1/15 a SpringerOpen Journal SHORT REPORT Open Access Cancer resource center of the desert patient navigator program: removing financial barriers to access to cancer care for rural Latinos Diana Peacher1*, Helen Palomino2, Eunjeong Ko3* and Susan I Woodruff4 Abstract Background: Healthdisparitiesin cancer mortality for racial/ethnic minoritiesis a public health concern. Financial barriers are themajor factors preventing cancer patients from accessing treatment in a timely manner. Thisarticle describes the characteristicsof theCancer Resource Center of the Desert (CRCD) Patient Navigator Program (PNP) inthe rural underserved US-Mexico border region of theImperial Valley. Financial navigation services and the insurance conversion process for cancer treatmentare described. Findings: CRCD data from 2010 to 2011 were analyzed to report the characteristics of cancer patients, focusing on insurance status changes.Eighty-one to 87% of thepatientsserved were Latino/Hispanic. A case scenario is presented to depict thefinancial navigation process in converting the patients’insurancestatus. Among thetotal samples, about 7% (n=32) in2010 and 16% (n=68) in2011 were in need of health insuranceassistanceupon their intake. Financialnavigators successfully converted virtually all non- or inadequately-insured rural cancer patients to better insurance status. Conclusion: Financial concerns are a significant thread thatruns throughout the diagnostic, treatment, and post treatment journey of cancer patients. The complicated nature of patients’circumstances and medical systemsoften hinders the patients going through theinsuranceconversion process. PNP plays a critical role inbridging thegap between patients and medical systems thus promoting cancer treatment access for this vulnerable population. Introduction multiple barriers to timely cancer care due to financial, Health disparities in cancer mortality for racial/ethnic structural, personal, and cultural factors (American minorities is a public health concern (American Cancer Cancer Society 2009). Latinos are more likely to work in Society 2009). Further, minority individuals living in low wage jobs (e.g., agricultural and domestic work) and rural areas face additional unique challenges related to are less likely to have health insurance than any other healthcareaccess,includinglimitedhealthcarefacilities, ethnic group (American Cancer Society 2009). Among physical distance, low socio-economic status, and rural subgroupsofHispanic/Latinos,Mexican Americans have or cultural practices associated with health behaviors a higher percentage of poverty, less education, and a and beliefs (Beyer et al. 2011; Eberhardt and Pamuk greater likelihood of no regular source of medical care 2004). The stage of cancer at diagnosis also differs by (American Cancer Society 2009). Inequities and dispar- urban/rural status, with individuals who live in rural ities in access to health care may increase the cancer areas more likely to be diagnosed with cancer at a later burden forthis at-riskpopulation,andheightentheneed stage (Schootman et al. 2003) and less likely to utilize forpublichealtheffortstoreducethesebarriers(American cancer screening (Coughlin et al. 2002) than people res- CancerSociety2009). iding in urban regions. Latinos, in particular, may face Cancernavigationprogram *Correspondence:[email protected];[email protected] The concept of the Patient Navigation Program (PNP) 1CancerResourceCenteroftheDesert,444So.8thStreetSte.B-3,ElCentro, was first introduced in the 1990s by Dr. Harold Freeman CA92243,USA Fulllistofauthorinformationisavailableattheendofthearticle as an intervention to reduce barriers among African ©2013Peacheretal.;licenseeSpringer.ThisisanOpenAccessarticledistributedunderthetermsoftheCreativeCommons AttributionLicense(http://creativecommons.org/licenses/by/2.0),whichpermitsunrestricteduse,distribution,andreproduction inanymedium,providedtheoriginalworkisproperlycited. Peacheretal.SpringerPlus2013,2:15 Page2of7 http://www.springerplus.com/content/2/1/15 American and Latino breast cancer patients in Harlem, PNP should address cultural diversity and competence NY (Freeman 2006). The program aims to reduce the (Han et al. 2009; Petereit et al. 2008; Steinberg et al. barriers that impede cancer patients’ access and 2006). utilization of health care prevention, diagnostic and treatment services, and aims to ensure that these are Cancerresourcecenterofthedesert(CRCD)patient received in a timely manner (Robie et al. 2011), thus navigatorprogram(PNP) filling the gap between “discovery and delivery” of health The Cancer Resource Center of the Desert (CRCD) was careservices. established in Imperial County in September, 2006, to Freeman (2004) indicated that the major determinants educate, guide, and empower the cancer patient and that contribute to this gap include culture, poverty, and family through the cancer journey in a non-hospital social injustice. Barriers associated with these factors based setting. Imperial County, California, is a desert re- contribute to the persistent nature of health disparities. gion that is heavily based on agriculture. It is located in Culturalbarriers found inthe scholarlyliterature include the southeast corner of California on the US/Mexico healthliteracy,languageissues,andculturalbeliefsabout border. Over 75% of the population in Imperial County cancer and cancer care (Freeman and Chu 2005). is Hispanic/Latino, many of whom are first generation Poverty-related barriers include financial deficits, poor immigrants. It is the poorest county in the State and has communication between health care providers and the highest unemployment rate at 28% (Imperial County patients, transportation concerns, and fragmented med- Public Health Department 2008). Not surprisingly, icalcare(FreemanandChu2005).Inparticular,financial statistics indicate that in 2005, 34% of Imperial County barriers are the major factors preventing cancer patients adult residents were uninsured all or part of the year as from accessing treatment in a timely manner (Lin et al. compared to 25% statewide (Imperial County Public 2008).Socialinjusticereferstostructuralbarriersinclud- HealthDepartment2008).Comparedtotheoverallstate, ing racial discrimination and bias that disproportionately about twice as many Imperial County adult residents affects access to health services for certain populations 19–64 years of age are Medicaid beneficiaries (Imperial (Freeman and Chu 2005). These factors are interrelated County Public Health Department 2008). The region is and taken as a whole, can significantly affect a range of vastly medically underserved (Office of Statewide Health health care services and outcomes, including prevention, Planning and Development OSHPD 2010). For example, posttreatmentmanagement,andevenmortality(Freeman although the leading cause of death in Imperial County and Chu 2005; Freeman and Vydelingum 2006). Racial/ is cancer (American Cancer Society 2009), cancer ethnic minority status, combined with these barriers, resources are extremely limited in that there is only one places these individuals at a greater risk for experiencing cancer center inthe4,500square mile county. healthdisparities. Due to the unique characteristics of the area and A number of previous studies found positive outcomes population, the CRCD established a PNP as part of its associated with the Patient Navigation Program. It has services. The CRCD PNP is unique in that it has been been shown to be beneficial in increasing patients’ can- designed to address specific needs and cultural barriers cer knowledge (Schlueter et al. 2010), decreasing emo- in the region. Some of the specific aspects of cancer care tional distress (Davis et al. 2009; Ferrante et al. 2008; that the PNP must address include: (a) bi-national Schlueter et al. 2010), and increasing emotional support healthcare, insofar as many of those in Imperial County (Carroll et al. 2010; Schlueter et al. 2010). The program are initially diagnosed and receive some treatment in also is noted to have increased patients’ completion of Mexico, (b) lack or inadequate insurance to pay de- cancer screenings (Chen et al. 2008; Jandorf et al. 2005), ductibles, co-pays, and insurance premiums, (c) lack of timeliness to diagnosis after abnormal cancer screenings transportation to and from diagnostic and treatment (Ferrante et al. 2008), and increased adherence to visits both within the county and out-of-county, (d) lack follow-up treatments (Ell et al. 2007) by providing of culturally appropriate care (e.g., bilingual health care transportation services, education, assistance with ap- workers), and (e) geographical and climatic extremes pointments, and coordination of services. The effects of including long distances from care and temperatures PNP are greater when navigators are community that can well exceed 100°F much of the year. For any or members (Steinberg et al. 2006). Community member all of the foregoing reasons, patients often skip, delay, or navigators are resourceful in recognizing and addressing completelyforego effective cancer treatment. culture related barriers (e.g., health beliefs, language bar- Although CRCD PNP provides patient education, rier) and play an important role in connecting commu- counseling, case management, and community outreach nities and facilitating dialogues between patients and and education, it has found that that one of the most members of the health care system. Hence, there has critical needs is “financial navigation.” While financial been a growing recognition that the development of a navigation can include assistance and advice about Peacheretal.SpringerPlus2013,2:15 Page3of7 http://www.springerplus.com/content/2/1/15 personal budgets, taxes, financial strategies, and credit Social Work, and each have six years of experience in options, improved insurance coverage has been the most cancer navigation. successful financial approach for this population to Upon arriving at the CRCD office, patients are greeted relieve the monetary stress or hardship associated with and assisted by staff. The first visit typically involves cancer treatment. Because no insurance or inadequate usinganIntakeFormtoassesstheclient’sneeds,including insurance profoundly affects patients’ timely treatment, theirhealthinsurancestatus. the CRCD PNP focuses resources on mitigating or elim- If financial navigation is needed, steps to convert non- inating potential barriers to treatment caused by lack of insured or inadequately insured to adequate insurance adequate insurance coverage. This manuscript describes status begins immediately. Examples of issues that the CRCD PNP clients and the results of its financial navigators consider in assisting patients for insurance navigationefforts. conversioninclude: CRCDPNPprogramdescription 1.Isthe patient insured?Ifnot,dothey qualifyforany The CRCD PNP is focused on intervention for the indi- MediCal(California’sMedicaid program)category? vidual across the cancer continuum, supporting clients 2.Ifinsured,whatisthe‘cap’forthepatient’scoverage? who are newly diagnosed as well as those already in Isthe coverageemployer-provided?Willthepatientbe treatment. Although it is hard to estimate the number of abletokeep the coverageshouldhe/shebecome patients in the Imperial County catchment area who disabledforlongerthanwhattheemployer allows? would need CRCD services, the American Cancer 3.Isthe patient coveredunderthe Imperial County Society 2009 estimates about 500 new cancer cases each MedicalServices Program (CMSP)?Thisisapotential year in Imperial County. CRCD PNP has served over barrier toanytreatmentoutsideofImperialCounty,as 1,300unduplicated patientssinceSeptember 2006. therearenoneighboringcountiesthataccept this Funding for CRCD is provided primarily through insurance. Thiscoverageisalsovery limited withmany fundraising activities, donations through the Combined diagnostictestsand medicationsnotcovered. Federal Campaign (Federal United Way), and local foun- 4.IfthepatienthasCMSPorstateMediCal,whatis dation grants all totaling $186,634 in 2011. Office space his/her shareofcost?Thismonthlyshareofcost can and utilities are provided in-kind by the local Pioneers rangefrom afew dollarstothousandsofdollarsper Memorial Hospital. Cancer patients and their families month.Navigatorsassistwith theapplicationand are referred by word of mouth from other cancer mitigationofthe shareofcost. patients in treatment, as well as referrals from the local 5.Isthe patient eligibleforMediCalfortheAged, radiation clinic, the two local hospitals, local home health Blind,and Disabled,specialprogramsthatwouldfully and community agencies, and the County Department of cover diagnostictestsand procedures? SocialServices. 6.DoesthepatienthavestateMediCal undera“family” The only eligibility requirement for CRCD services is code which iscontingentuponthefamily income and anactive cancerdiagnosis. minor children?Navigatorsexplore whetheritwould Patients who report experiencing barriers to cancer beadvantageousforpatientstoapply forMediCal care are all eligible for enrollment in PNP. Five types of under adifferentcode. Bydoing this,anychange tothe barriers to cancer care are assessed: (1) Financial/insur- familydoesnotchange theirMediCalstatus. ance barriers which refer to financial need or no/inad- 7.DoesthepatientqualifyforCalifornia’sBCCTP equate health insurance benefits to cover treatment (Breastand CervicalCancerTreatment Program) or costs; (2) Transportation barriers, which refer to a need IMPACT(ImprovingAccess,Counseling,and for public and/or private transportation assistance; (3) TreatmentforCalifornianswith Prostate Cancer)? Communication/cultural barriers, which include ThesearespecialstateMediCalprogramsthat serveas language barriers, health literacy, and communication safeguards forcancer patientswhoare uninsured or issues with health care providers related to diagnosis underinsured. and treatment; (4) Physical needs which include, assist- ance with housing, food, prosthesis, and extended care; As an example of the types and breadth of financial and (5) Other needs such as referral for mental health navigation provided by the CRCD PNP, we provide a counseling. description of an actual patient. This patient had CRCD’s PNP is staffed by two full time navigators. employer-provided health insurance but its coverage Both Patient Navigators are bilingual speakers in English would cap out during her hospital stay when she was re- and Spanish; one is certified in the Patient Navigator ferred to CRCD. Mrs. P., a married non-English program by the Harold P. Freeman Institute, New York. speaking, immigrant farm worker of Mexican descent Both hold degrees in the field of Human Services or was admitted to the emergency room of the local Peacheretal.SpringerPlus2013,2:15 Page4of7 http://www.springerplus.com/content/2/1/15 Imperial Valley hospital with severe abdominal pain. the patient was considered terminal, the patient was While hospitalized, it was found that she had stage III given presumptive State MediCal by the County. Since it colon cancer. The social worker referred the patient to is Presumptive only, the share of cost continued to be CRCD for psychological counseling, cancer education, charged to the patient until a final determination was and financial navigation services. CRCD followed up by made by the state. Once the state made the determin- contacting the patient while she was in the hospital, and ation, the budget was re-worked to accommodate a family members came to the CRCD office to initiate enrollment in CRCD PNP navigation. Upon discharge Table1Characteristicsofcancerpatientsreceiving from the hospital, Mrs. P. met with CRCD staff for servicesattheCRCDPNPin2010and2011 further needs assessment. The navigator identified Participantcharacteristics n(%) multiple issues that could impact the patient’s course of 2010 2011 treatment: (a) both the patient and her husband had (n=457) (n=428) limited knowledge about her cancer diagnosis, the Age course of treatment, and her prognosis; (b) her insur- 0–19 11(2) 11(2.6) ance coveragewaslimited andhad cappedwhileshe was 20–39 23(5) 25(5.8) in the hospital; and (c) she would no longer be able to 40–49 45(10) 64(15.0) work, thus changing the family income and ability to 50–59 95(21) 105(24.5) pay out of pocket expenses. With the given circumstances, the imminent issues Mrs. P. faced were: 60–69 104(23) 94(22.0) the continuation of her medical follow-up and 70andolder 136(30) 102(23.8) treatments including seeking consultations from Unknownage 43(9) 27(6.3) specialists in another county; completion of diagnostic Gender tests; adherence to cancer treatment; and medication Female 276(60) 266(62.2) management. First Step: Based on the CRCD financial navigator’s Male 181(40) 162(37.8) assessment of the patient’s income, assets, and property Race/Ethnicity holdings,thefinancialnavigatorfacilitatedanapplication Latino 370(81) 371(86.7) for MediCal. By applying before the end of the month, Whitenon-Latino 69(15) 42(9.8) MediCal coverage extended retroactively to the first day AfricanAmerican 10(2) 10(2.3) of the same month, thereby acting as secondary insur- Asian/PacificIslander 7(2) 2(0.5) ance until the primary’s cap was reached. Within 48 Other 1(0.1) 3(0.7) hours of the submission of the application, Mrs. P. was found to qualify for County MediCal (CMSP). Regard- MajorTypesofCancer less, insurance barriers remained. CMSP is limited to in- Breast 142(31) 141(32.9) county coverage only and, while Mrs. P. was deemed to Blooda 64(14) 56(13.2) be medically needy, she had a $700 monthly share of Prostate 49(11) 45(10.5) cost or co-pay because the family income exceeded the Colorectal 44(10) 38(8.9) program limit by $700. This monthly out of pocket ex- Lung 30(7) 21(4.9) pense must be paid first, before CMSP pays the provider. Pancreatic 12(3) 15(3.5) Second Step. Given the severity of Mrs. P’s cancer Cervical 11(2) 12(2.8) diagnosis and inability to resume her work as a farm Other/unknown 105(23) 100(23.4) worker, CRCD financial navigators concurrently faci- PrimaryLanguage litated an application for the special MediCal category English 178(39) 157(37) for the Aged, Blind, and Disabled, and also for Social Spanish 279(61) 271(63) SecurityDisability Insurance(SSDI). Third Step. During the process of the MediCal appli- Neededfinancial/insurancenavigation 32(7.0) 68(15.9) cation, Mrs. P’s cancer stage changed to Stage IV. Finan- InsuranceStatuspriortoPNP(thosewhowereinneed cial navigators immediately forwarded the new medical offinancialnavigation) information to a local MediCal eligibility analyst for the Uninsured 15(3.3) 32(7.5) purpose of establishing presumptive State MediCal PartiallyInsured 11(2.4) 25(5.8) Status (if approved, the patient would now be able to FullyInsured,buthadlimitedcoverage 6(1.3) 11(2.6) attend medical appointments to out-of-county medical aIncludesLeukemia,HodgkinsLymphoma,Non-HodgkinsLymphoma,and providers as referred by the local oncologist). Because MultipleMyeloma. Peacheretal.SpringerPlus2013,2:15 Page5of7 http://www.springerplus.com/content/2/1/15 higher need threshold. The end result was a zero share variables collected on the Intake Form for 457 patients of cost for the patient. Another outcome was that the in 2010 and 428 patients in2011. Socio-demographic in- Mrs. P. was eligible to receive reimbursement for the formation of the patients was similar in both years. previous share of cost payments. With this changed in- About 70% of the patients were 50 years old and about surance status, the patient (and CRCD financial two-thirds were female. The great majority of patients navigators) could now contact medical billers to mitigate (81% in 2010; 86.7% in 2011) were Latino, with 10% in the over $80,000 in medical bills incurred since Mrs. P.’s 2011 and 15% in 2011 reporting being White non- hospitalization. The entire insurance conversion process Latino. About two thirds (61% in 2010; 63% in 2011) took about 6 weeks from the first date of financial navi- identified Spanish as their primary language. With re- gation at CRCDPNPuntilMediCalwasapproved. gard to the types of cancer diagnoses, about one third of the patients were diagnosed with breast cancer, followed Methodology by blood-related cancers and prostate cancer in both Patientnavigationdata years. To describe the characteristics of patients and the out- come of their financial navigation, data were obtained from the Patient Navigation Vista Share Outcome Insuranceconversion Tracker database. This database contains patients’ In 2010, the CRCD served 457 patients, about half sociodemographic characteristics, cancer related infor- (n=241) of which were newly referred patients. Among mation, and barriers and needs to cancer treatment. In- those, records indicate that 32 patients (7%) reported a take was conducted via face to face interview by staff financial barrier and were in need of financial navigation members using a structured intake form. Once the in- (seeTable 1). There were37 insurance changes made for take was completed, all patients’ information was these patients. However, this is an underestimated num- entered into the Vista Share database. Data from 2010 ber of patients receiving financial navigation in 2010, and 2011 were extracted, converted to an Excel file by a because electronic tracking of this information was not staff member at CRCD, and patient identifying informa- implemented until the end of 2010. Fifteen of the 32 tion (e.g., name, address, contact number) was removed. were initially uninsured. Among them, 12 were The data was then converted into the SPSS program. converted to full insurance coverage (e.g., the BCCTP This study was approved by the Institutional Review program), and three were converted to partial coverage Board(IRB# 691078). such as through the County Medical Services Program. For the 11 who had partial insurance, all were converted Results to full insurance. Six patients with full insurance cover- CharacteristicsofpatientsreferredtotheCRCD age were converted to full insurance with better benefits To describe the type of patients referred to the CRCD, which typically meant more treatment options and no Table 1 shows the distribution of several background premiumorco-payment. Figure1InsuranceStatusBeforeandAfterPatientFinancialNavigationforTwoYears. Peacheretal.SpringerPlus2013,2:15 Page6of7 http://www.springerplus.com/content/2/1/15 In 2011, the CRCD served 428 patients, 221 of which complex nature of patient circumstances and limited were newly referred. Among the total patients in 2011, length of hospitalization often make it difficult for 68 patients (15.9%) reported facing financial barriers and them to navigate this insurance maze and successfully were in need of financial navigation (seeTable 1). There convert the patients’ insurance status in a timely fash- were 83 insurance changes made for these patients. ion, particularly after hospital discharge. The onus Thirty-two patients were initially uninsured; 31 of them then is often on the shoulders of the patient to figure became fully insured as a result of the CRCD PNP, and out how to access treatment and pay for his/her often one gained partial coverage. Among 25 patients initially enormous medical bills. partially insured, 24 were converted to full insurance, Although the CRCD PNP greatly enhanced access to and one was converted to partial insurance with better care for these rural, primarily Latino patients, the study benefits. Among those 11 patients initially with full in- is preliminary and has several limitations. The CRCD surance, nine were converted to full insurance with bet- does not have the ability to measure the cost of treat- ter benefits. Figure 1 graphically shows the change in ment and payment to providers because those costs vary groups’ needing financial navigation in 2010 and 2011. with the cancer diagnosis, stage at diagnosis, treatment Relativelydarkershadingindicates amorepositivestatus plan, and many other variables. While long-term ininsurance coverage. outcomes are not known, the fact that many of its patients would not have had timely cancer treatment Discussion without CRCD insurance conversion intervention and The purpose of this article was to describe the that generally, the insurance that is obtained for them is characteristics of an innovative patient navigation pro- optimum for their needs, is reason to believe that there gram in a relatively poor rural agricultural border arelong-term benefits. county, and to report on the program’s success in Financial concerns are a significant thread that runs converting cancer patients’ insurance status. In all but throughout the diagnostic, treatment, and post treat- two instances of documented financial need, the CRCD ment journey of cancer patients. When obstacles arise, it PNP improved the patient’s insurance status. Although isvitalthattherebeanadvocate/partnerwiththepatient more data need to be collected, the CRCD PNP to mitigate or remove the financial barriers to ensure estimates that approximately 1 out of 5 of their patients continuum of care. To that end, the CRCD PNP will need financial navigation for cancer care in the provides a strategic partnership with consumers in its future. ruralborder area. Insurance conversion from employer-provided private insurance to MediCal allowed the patient to receive can- Competinginterests Thereisnocompetinginterestamongauthors. cer treatment without being limited to geographic loca- tion or the burden of having to pay a share of the cost. Authors’contribution The case study illustrated the way that financial naviga- DPwasmainlyinvolvedincollectingdata,interpretingdata,anddraftingthe tion often plays an important role in helping patients re- manuscript.HPwasinvolvedincollectingdata,interpretingdataand ceive cancer treatment in a timely manner by alleviating draftingthemanuscript.EKwasinvolvedinconceptualizinganddesigning thestudy,analyzingdataandrevisingthemanuscript.SWwasinvolvedin financial burdens. In the case of Mrs. P., without finan- designingthestudy,analyzingdata,andrevisingthemanuscript. cial navigation intervention, she would not have known to apply for the different categories of MediCal and Authordetails 1CancerResourceCenteroftheDesert,444So.8thStreetSte.B-3,ElCentro, would not have been able to follow the treatment plan CA92243,USA.2CancerResourceCenteroftheDesert,444So.8thStreetSte. with out-of-county oncologists. The patient had com- B-3,ElCentro,CA92243,USA.3SanDiegoStateUniversity,SchoolofSocial plete coverage with zero share of cost effective the Work,5500CampanileDrive,SanDiego,CA92182-4119,USA.4Centerfor AlcoholandDrugStudies,SanDiegoStateUniversity,SchoolofSocialWork, first day of the month that the patient entered into the 6386AlvaradoCourtSte224,SanDiego,CA92120,USA. hospital. The patient was able to see any physician accepting MediCal and obtain prescriptions covered Received:16October2012Accepted:11January2013 Published:18January2013 under theState MediCalplan. CRCD financial navigation is not only beneficial for References patients, it also enables the hospital and all other AmericanCancerSociety(2009)CancerFacts&FiguresforHispanics/Latinos medical providers to receive compensation for ser- 2009–2011.,Availableat:http://www.cancer.org/acs/groups/content/@nho/ documents/document/ffhispanicslatinos20092011.pdf vices rendered. 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