Impact of 2012 Spanish Health Care Reform on Hiv- Positive Immigrants: a Mixed Methods Approach

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CUNY Graduate School of Public Health & Dissertations and Theses Health Policy

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IMPACT OF 2012 SPANISH HEALTH CARE REFORM ON HIV- POSITIVE IMMIGRANTS: A MIXED METHODS APPROACH

Megi Gogishvili CUNY School of Public Health, [email protected]

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IMPACT OF 2012 SPANISH HEALTH CARE REFORM ON HIV-POSITIVE IMMIGRANTS:

A MIXED METHODS APPROACH

A DISSERTATION

MEGI GOGISHVILI

Concentration: HEALTH POLICY AND MANAGEMENT

Presented to the Faculty at the Graduate School of Public Health and Health Policy in partial fulfillment

of the requirements for the degree of Doctor of Public Health

Graduate School of Public Health and Health Policy City University of New York

New York, New York

May 2020

Dissertation Committee:

TERRY T.-K. HUANG, PhD, MPH, MBA KAREN R. FLÓREZ, DrPH SERGIO A.COSTA, PhD, MSEd

Copyrighted By

MEGI GOGISHVILI

2020

ABSTRACT

Impact of 2012 Spanish Health Reform on HIV-Positive Immigrants: A Mixed Methods Approach

Megi Gogishvili

Advisor: Dr. Terry T.-K. Huang

Background: The financial crisis of 2008 hit Spain hard. As a consequence, the government took multiple austerity measures, including reforms in the healthcare system in 2012. Specifically, the government reduced the budget for health and social services by 13.7% in 2012. The reduction was further followed with structural changes via the 2012 Royal Decree Law (RDL) and Royal Decree (RD).

The 2012 RDL and RD entailed broad areas of action, but most importantly the Spanish National Health

System (SNS) no longer covered undocumented immigrants. The 2012 RDL and RD excluded approximately 500,000 undocumented immigrants from SNS.

The number of immigrants in Spain has increased greatly since the 1990s; thus, ensuring that the health needs of this vulnerable population is addressed by the Spanish health system is of great importance. Immigrants in Spain and throughout much of Europe are often socio-economically disadvantaged and therefore especially vulnerable during economic crises. In addition, immigrants are disproportionally affected by infectious diseases and other health disparities. Spain has one of the highest prevalence rates of HIV cases among European Union countries. Yet, health disparity issues are much understudied in Spain and there is no comprehensive public health framework addressing the wellbeing of the immigrant population. This dissertation aimed to fill this gap by investigating the impact that the

2012 austerity measures have had on immigrants in order to inform future interventions.

Objective: To examine, in three separate papers: 1) the legal and regulatory actions taken at the regional level in 7 Autonomous Communities (ACs; Andalucía, Aragón, Basque Country, Castilla La-Mancha,

Galicia, Madrid, and Valencia) after adoption of RDL 16/2012 and RD 1192/2012 (April and August

iii

2012) until the enactment of RDL 7/2018 (July 2018) and their impact on access to both general healthcare and HIV services among undocumented immigrants; 2) the prevalence of late HIV diagnoses

(LHD) among immigrants regardless of documentation status living in Spain versus native-born

Spaniards from 2010 to 2015; and 3) systematic barriers encountered by HIV-positive immigrants while initially accessing healthcare services and their personal experiences as HIV-positive immigrants living in

Spain.

Methods: In the first study, a policy implementation analysis of how 2012 RDL and RD was conducted by reviewing regional documents and supplementary interviews with 9 regional public health administrators/specialists in 7 ACs. Indicators were developed based on prescribed requirements to access free healthcare services among undocumented immigrants. ACs were categorized under 5 levels of access: High Access, Medium-High Access, Medium, Medium-Low Access, and Low Access.

In the second study, the prevalence of LHD among HIV-positive, antiretroviral therapy-naïve immigrants living in Spain compared with native-born Spaniards was estimated using data from the 2010-

2015 Cohort of the Spanish AIDs Research Network (CoRIS; n=5943 in total, 1488 immigrants and 4445 native-born Spaniards). Multivariate logistic models were fitted to compare the prevalence of LHD between the two groups, adjusting for demographic and behavioral covariates.

The third study relied on key informant interviews (n=12) to investigate barriers encountered by

HIV-positive immigrants while initially accessing healthcare services and their life experiences as HIV- positive individuals in Spain. Participants were recruited via a local nongovernmental organization

(NGO). Thematic analysis was performed to identify common themes related to systematic barriers to accessing care and experiences of discrimination and distress in Spain.

Results: This research discovered huge variability in how the 2012 RDL and RD were implemented across 7 ACs. Andalucía provided the highest access to free health services to undocumented immigrants for both general care and HIV treatment, with few administrative barriers, including no requirement for identification or registration in the AC. Medium-high access was provided by the Basque Country and

Medium access was provided by Aragón, Madrid, and Valencia. Medium-Low access was provided by

Castilla-La Mancha. Galicia provided the lowest access. Compared with other ACs, Madrid and Galicia differentiated levels of access for undocumented migrants in terms of HIV care (less stringent) versus general healthcare (more stringent). Although regional specialists mostly agreed that access to free healthcare for undocumented immigrants was a human rights issue, 50% of the selected ACs required a minimum period of proven residency in a region.

In addition to the structural barriers and distress experienced by HIV-positive immigrants, this dissertation found that the prevalence of LHD was much higher among immigrants than native-born

Spaniards (37.4% vs 45.7%, respectively; P <.001). Multivariate regression analysis showed that the adjusted prevalence ratio (APR) of LHD among immigrants compared with native-born Spaniards was

1.15 (95% CI, 1.02-1.28), after adjusting for covariates. This disparity widened from 2010-2011

(APR=1.14, 95% CI, 1.02-1.29) to 2012-2015 (APR=1.28, CI, 1.17-1.39), although the change was not statistically significant.

Finally, 4 primary themes were identified as a result of the qualitative analysis of key informant interviews among HIV-positive immigrants in Valencia. Specifically, participants identified experiencing emotional or physical (eg, side effects of medication) distress as they adapted to life as HIV-positive individuals. Participants also expressed experiencing discrimination while living as HIV-positive immigrants in Spain. The primary systematic barrier to accessing health care encountered by participants was the inability to fulfill the requirement of having proof of registration in an AC for the required time period, thus not being able to apply for a public health insurance card and utilize free care services.

Participants identified a positive impact of third-party (NGO, social worker, friend/family member) guidance on their experience of applying for a public health insurance card.

Discussion: This dissertation found that undocumented immigrants are differentially affected by HIV in

Spain. The 2012 healthcare reform restricted their access to free healthcare services in real and practical ways, but the level and types of restriction varied greatly across ACs. This research also revealed the importance of civil society for advocating for the human right to health care for all as well as providing instrumental support to immigrants on how to successfully navigate the Spanish health system. A larger

role of NGOs in the Spanish health system to address the health needs of vulnerable population may be worthy of further research and consideration. Overall, this dissertation makes an important contribution to the knowledge base on the experience of healthcare among HIV-positive immigrants in Spain.

Collectively, the body of work draws on and provides a mixed methods framework that can serve as the methodological basis for further research on immigrants and health disparities in Spain and elsewhere in

Europe. Findings will inform future policies aimed at providing a comprehensive public health framework to enhance healthcare access among all populations, including both documented and undocumented immigrants.

TABLE OF CONTENTS

ABSTRACT ...... III LIST OF TABLES AND FIGURES ...... IX DEDICATION ...... X ACKNOWLEDGEMENTS ...... XI DISCLOSURE STATEMENT ...... XII

CHAPTER 1: INTRODUCTION ...... 13 BACKGROUND...... 13 POSSIBLE IMPACT OF 2012 RDL AND RD ON HIV-POSITIVE IMMIGRANTS ...... 14 DISPROPORTIONAL IMPACT OF HIV ON IMMIGRANTS VERSUS NATIVE-BORN POPULATION...... 15 POLICY BARRIERS ...... 17 SPECIFIC AIMS ...... 19 REFERENCES...... 21

CHAPTER 2: A POLICY IMPLEMENTATION ANALYSIS ON ACCESS TO HEALTHCARE AMONG UNDOCUMENTED IMMIGRANTS IN 7 AUTONOMOUS COMMUNITIES OF SPAIN, 2012 – 2018 ...... 27 INTRODUCTION...... 27 METHODS ...... 29 RESULTS...... 32 DISCUSSION ...... 42 REFERENCES...... 48

CHAPTER 3: LATE HIV DIAGNOSIS AMONG IMMIGRANTS IN SPAIN VERSUS NATIVE- BORN SPANIARDS, 2010 – 2015 ...... 72 INTRODUCTION...... 72 METHODS ...... 73 RESULTS...... 75 DISCUSSION ...... 76 REFERENCES...... 79

CHAPTER 4: A QUALITATIVE STUDY SYSTEMIC BARRIERS ENCOUNTERED BY HIV- POSITIVE IMMIGRANTS IN SPAIN ...... 87

vii

INTRODUCTION...... 87 METHODS ...... 88 RESULTS...... 89 DISCUSSION ...... 96 REFERENCES...... 100

CHAPTER 5: CONCLUSION ...... 107 OVERIVEW...... 107 LIMITATIONS ...... 110 POLICY IMPLICATIONS ...... 111 FUTURE RESEARCH ...... 113 OVERALL CONCLUSIONS...... 113 REFERENCES...... 115

APPENDICES ...... 117 A. CHAPTER 1: METHODOLOGIC NOTES...... 117 B. CHAPTER 2: METHODOLOGIC NOTES ...... 118 C. CHAPTER 3: METHODOLOGIC NOTES ...... 122 D. CHAPTER 4: METHODOLOGIC NOTES ...... 128

viii

LIST OF TABLES AND FIGURES

CHAPTER 2 TABLE 1. INDICATORS OF LEVEL OF FREE ACCESS FOR GENERAL HEALTH CARE IN EACH AC...... 53 TABLE 2. LEVEL OF BARRIERS TO ACCESSING FREE HEALTHCARE SERVICES AND/OR HIV CARE FOR UNDOCUMENTED IMMIGRANTS IN 7 ACS OF SPAIN ...... 54 TABLE 3. SUMMARY OF REMARKS MADE BY THE INTERVIEWEES ...... 67 TABLE 4. IMPLEMENTATION AND MONITORING OF THE POLICY CHANGES ADOPTED BY THE 7 ACS ...... 69 FIGURE 1. MODEL OF LEVEL OF ACCESS TO FREE GENERAL HEALTHCARE SERVICES FOR UNDOCUMENTED IMMIGRANTS ...... 71

CHAPTER 3 TABLE 1. CHARACTERISTICS OF THE TOTAL SAMPLE FROM 2010 TO 2015...... 83 FIGURE 1. PREVALENCE OF LHD BY POPULATION GROUP ACROSS YEARS ...... 84 TABLE 2. MULTIVARIATE ANALYSIS OF THE PREVALENCE OF LHD IN THE FULL SAMPLE AND BY POPULATION GROUP ...... 85 TABLE 3. MULTIVARIATE ANALYSIS OF THE PREVALENCE OF LHD IN THE FULL SAMPLE AND TIME PERIOD ...... 86

CHAPTER 4 TABLE 1. CHARACTERISTICS OF THE PARTICIPANTS...... 103 TABLE 2. IMMIGRATION DETAILS OF THE PARTICIPANTS ...... 104 TABLE 3. PARTICIPANTS’ EXPERIENCES BEING HIV-POSITIVE ...... 105 TABLE 4. THEMES IDENTIFIED THROUGH THE INTERVIEWS ...... 106

DEDICATION

I dedicate this dissertation in its entirety to my wonderful parents, Merab and Manana Gogishvili, and my brother, Giorgi Gogishvili. Even though pursuing my goals meant being many continents away from you and my home for years, you have constantly been there for me to motivate and to support me throughout my tenure as a doctoral student. This achievement is as much yours as it is mine. I would never have been able to succeed without you.

I also want to dedicate this dissertation to the life of my constant source of inspiration, my grandmother, Dr. Margalita Manchkhava. You have always been my role model. Your presence and love within me will never fade away.

ACKNOWLEDGEMENTS

There are so many that I would like to acknowledge that made this dissertation possible. I want to thank my amazing chair, Dr. Terry Huang. Your constant guidance and motivation pushed me over the finish line. There are simply no words to express my gratitude for your support academically and personally. For me you are not only my advisor, but my mentor to whom I will always be indebted. I want to also thank my other committee members Dr. Karen Flórez and Dr. Sergio Costa. I have gained invaluable knowledge from you and motivation to always think broader. I was truly lucky to have both of you on my committee. I also want to thank Dr. Bill Gallo, who has been there for me from the beginning of the program, always believing in me. Thank you all for your wisdom.

I also want to acknowledge invaluable support I have received from my friends from all over the world. Irina Kvlividze, Keti Nozadze, Tata Kareli, Dr. Ceren Sönmez, Amiran Gelashvili, and Kevin

Guillemot - in good times and bad, you have always been there for me. Thank you all for your love and for being such cheerleaders of mine. My sisters and brothers for life without a doubt!

DISCLOSURE STATEMENT

I have no conflicts of interest to disclose.

xii

Chapter 1: Introduction

Background

The financial crisis of 2008 significantly affected Spain.1,2 The impact of the crisis was evident through decreased economic growth, an increased ratio of public deficit to gross domestic product (GDP) compared with the average of other European Union (EU) countries (9.4% in 2011 compared with 4.4% of

EU-27),3 the increase in the percentage of the total population living below the poverty line (21% by 2012),1 and skyrocketing unemployment rates.1,2 Specifically, in 2013, 24.4% of all Spanish citizens (vs 8.0% in

2006) were unemployed, 30.3% (vs 9.4%) were unemployed among documented immigrants from EU countries, and 40.4% (vs 12.1%) were unemployed among documented immigrants from countries outside of the EU. The average household budget per person and year in Spain was €11,174.98 (vs €11,372.52 in

2006) for Spanish nationals and €7,473.36 (vs €8,544.72 in 2006) among documented immigrants.4 No data were identified to make similar comparisons for undocumented immigrants in Spain. This discrepancy can largely be explained by a lack of administrative status for the group of immigrants. Benefits provided under unemployment insurance (previous earnings-related benefit that can be provided from 4-24 months) and under social assistances (income-related benefits that can be provided as long as criteria are met)5 may explain the relatively slight fall in average household income in Spain as compared with the drastically increased unemployed rate.

In 2010, Spain’s total healthcare expenditure was 9.6% of the GDP; of these expenditures, 74% were related to public healthcare.1 The percentage of GDP spent on Spain’s healthcare was below the

Organization for Economic Co-operation and Development average for the same year.3 Nevertheless, the government reduced the budget for health and social services by 13.7% in 2012.1 The reduction was further followed with the structural changes implemented through the 2012 Royal Decree-Law (RDL) and Royal

Decree (RD).3 The RDL 16/2012 was passed in April 2012 as “urgent measures to guarantee the sustainability of the Spanish National Health System (SNS) and improve the quality and security of its benefits.” The RD 1192/2012, passed in August 2012, was described as “regulating insured and beneficiary

status for the purpose of health care in Spain, charged to public funds through the National Health System.”6

Changes implemented through the 2012 RDL and RD were envisioned to better control expenditures, improve efficiency, and increase financial resources for the healthcare system.3 The 2012 RDL and RD entailed broad areas of action (Appendix A.I),6 but most importantly the SNS no longer covered undocumented immigrants, nor persons over age 26 years who had never been employed previously.3

However, these excluded groups could still access emergency care, prenatal and postnatal care, and health care for minors.1,7 Undocumented immigrants were also allowed to purchase health insurance for a monthly fee of €59.20, and €155.40 for those above age 65 years.1 It is not clear how much revenue these changes actually generated, nor is there a clear-cut effect on the health of the population no longer covered by public health insurance. However, only 3 months after the implementation of the RDL and RD, the consumption of medication for mostly chronic illnesses had dropped by 10%.3

Possible Impact of 2012 RDL and RD on HIV-Positive Immigrants

The number of immigrants in Spain has increased greatly since the 1990s.6,8 In 1998, immigrants comprised only 1.6% of the total population, whereas in 2019 that percentage increased to 10.7%.9 Because immigrants are identified as one of the most vulnerable groups, especially during economic crises,7 and are disproportionally affected by infectious diseases,10 it is important to study the impact that the recent austerity measures have had on them in order to inform future interventions and policies. A specific area of concern is HIV because Spain has one of the highest prevalence rates of HIV cases among EU countries.11

Out of 31 EU/European Free Trade Association member countries, 22 (71%) identify immigrants as an especially vulnerable population for HIV infection.12 Immigrants are also disproportionally affected by HIV compared with the native-born population.10,12,13

The 2012 RDL and RD excluded approximately 500,000 undocumented immigrants from the national health system.1 Previous studies have shown that HIV-positive undocumented immigrants tend to delay seeking health care. With the new restrictions imposed on free services, the health of undocumented immigrants could worsen. The threat to the health of the entire population, due to the contagious nature of

diseases such as HIV, could also increase.3,14 Even though undocumented immigrants can purchase health insurance, the premiums are generally unaffordable,1 particularly as 40% percent of documented immigrants are unemployed.4

In February 2014, approximately 2 years after the passage of the 2012 RDL and RD, the Ministry of Health, Social Services and Equality (MSSSI) approved a change referred as “Healthcare Interventions in Situations of Public Health Risk.” This document declared that all individuals were entitled to health care whenever an identified infectious disease was subject to epidemiologic control.15 This change theoretically allowed HIV-infected undocumented immigrants to access the necessary treatment and care; however, confusion regarding legal entitlements persisted. In many European countries, access to health care has been denied to immigrants despite their legal entitlement to the services.7 Undocumented immigrants are denied access to health care due to their unawareness of laws, unwillingness of the medical professionals to treat undocumented immigrants, and discrimination and racism.16,17 Thus, a legal entitlement to health care may not translate into actual access to services. It is also not clear how many

Autonomous Communities (ACs) in Spain implemented the 2014 policy in their respective regions.

Cuts in free healthcare services and increased copayments can also affect the HIV-positive documented immigrant population. Due to the high unemployment rate among immigrants,4 employment, food, and housing are often prioritized over health care.18 Any HIV treatment disruption can cause health deterioration, increased mortality, virus transmission, and an increase in the medical costs incurred by the government in the long term.19

Disproportional Impact of HIV on Immigrants versus Native-Born Population

Of 125,225 newly diagnosed HIV cases reported by the 29 EU/European Economic Area (EEA) countries participating in the European Center for Disease Control and Prevention (ECDC) project between

2007 and 2011, 49,950 (40%) were among immigrants. Overall, 92% (45,954 cases) of the reported HIV- positive immigrants were identified in Western European countries (15/29 participating countries). Among the newly diagnosed cases, 54% (26,973 cases) were identified in sub-Saharan African immigrants, 12.2%

(6,094 cases) in Latin American immigrants, and 9.5% (4745 cases) in immigrants from within Western

Europe.20

A recent systematic review finds that immigrants in high-income countries are disproportionally affected by HIV.21 The results of extensive analysis conducted by the ECDC through literature review, routine surveillance data, and direct reports of 29 EU/EEA countries also show the disproportional effect of HIV on immigrants compared with the native-born population.10,20,22,23 Numerous other studies have also found a disproportionate burden of HIV among immigrants in various high-income countries.13,24-31 This finding appears to be robust and consistent across studies and systematic reviews, and the studies of newly diagnosed cases.10,20,22-31 Indeed, immigrants are among the groups most at risk for HIV infection, along with men who have sex with men, injection drug users, and sex workers.22

According to the latest official report of the MSSSI of Spain, 120,000 to 150,000 people were living with HIV infection in 2010. A decrease in the rate of newly diagnosed HIV cases in Spain was reported from 1999 (7.7 cases per 100,000) to 2009 (2.3 cases per 100,000).32 However, reporting of HIV rates in

Spain was based on the information collected from the registries, which covered only 33% of the population.10 In 2013, with the help of the complete implementation of the HIV data collection tool

(Information System for New Diagnosis of HIV), HIV incidence was reported on the whole country for the first time.33 According to the latest MSSSI report, a total of 3366 newly diagnosed cases (7.2 cases per

100,000) were registered nationwide in 2014, of which 32% were among immigrants.34

The disproportional impact of HIV in immigrants compared with native-born citizens was observed in Spain as early as the mid-1990s.10,20,22,23,35,36 However, the total number of HIV-positive immigrants in

Spain has been very low until recently.10,37 An increase in the rate of HIV infection in immigrants has been attributed to the drastic growth of immigration in the past decade.38-40 Latin American and sub-Saharan

African immigrants have the highest number of newly diagnosed HIV cases among immigrants in

Spain.10,20,34,36,40

Various social, economic, cultural, and legal factors in host countries increase the vulnerability of immigrants to HIV infection.18,20,27,35,39-42 Specifically, social and economic difficulties encountered by

immigrants in their host countries frequently result in inconsistent condom use, multiple sexual partners, high alcohol consumption, drug injection,43-47 sexual exploitation,498and prioritization of food and housing over health care.18 Risk factors or consequent behavioral change can differ depending on the host region.

Overall, barriers to accessing health care also increase the vulnerability of immigrants to HIV. Specifically, laws and regulations preventing immigrants from accessing services (availability of health insurance, citizenship, eligibility for social security, legal status in the host country), linguistic difficulties, presence of racism in health facilities, stigma associated with HIV creating fear of confidentiality violation, lack of education associated with HIV, and inadequate information on how the test is performed.18,20,21,49

One third of HIV-infected individuals across Europe enter care late.50 Late HIV diagnosis (LHD) is one of the important factors associated with late treatment initiation.51 Early testing for HIV and its benefits for managing the disease have been broadly promoted50; however, these efforts have not always been effective.52,53 Early HIV diagnosis improves health outcomes of HIV patients, prevents transmission of the virus, and reduces the costs of HIV treatment.50,54-57 Studies show that early initiation of treatment can protect against damage to organ systems, decrease transmission risk, and prevent disease progression.58-

64 Late antiretroviral therapy (ART) initiation has been found to be associated with poor response to treatment and consequently to high mortality and morbidity.60,65-67

Nevertheless, almost 50% of immigrants newly diagnosed with HIV in Spain were already in need of ART treatment (implying late diagnosis), compared with approximately 40% of the native-born population at the time of diagnosis.22 However, only 4% of all HIV-positive immigrants were receiving

ART in 2001, 10% in 2008, and 14% in 2010.22 Sub-Saharan Africans and Latin American immigrants were particularly disproportionally represented among cases of late diagnosis in 12 ACs of Spain between

2003 and 2008.68

Policy Barriers

Improving access to health care is an important goal of health policy69; thus, researchers aim to minimize barriers that prevent individuals from obtaining care.70 Various definitions of “access” in the

literature describe different dimensions of health care.71-80 However, most researchers agree that access should be identified as a timely use of services by an individual according to his or her need. Researchers distinguish between the supply of and the opportunity to use health care, and actual use of services.81 Thus,

”having access” refers to the availability and the potential to use health services when needed, whereas

”gaining access” denotes an actual initiation into a service.78 There are demand-side barriers and supply- side barriers to accessing health care.70,82 Demand-side barriers refer to factors hindering access to care at the individual, household, or community level. Supply-side barriers refer to health system determinants that prevent the utilization of the services by individuals, households, or the community.82 The performance of health systems and policy initiatives to inhibit equal access is a supply-side barrier.82,83 Policy changes can positively or negatively influence barriers to accessing care.84-86 Comprehensive analysis of health policies addressing immigrant populations has been previously found necessary.87

Spain makes an interesting case for studying the impact of HIV-related health policy on its population. In particular, how national policies are implemented in the 17 decentralized ACs and 2 autonomous cities88 is of considerable interest. Between 1981 and 2001, healthcare management was gradually transferred to the ACs, creating a decentralized tax-based healthcare system. The result of the transfer was 18 different models of healthcare management which were developed according to the political economy and ideologies of the respective ACs.88 Thus, laws enacted by the Spanish central government may not be implemented equally across the ACs due to the decentralized structure of the country, engendering the possibility of differential healthcare provision in the population given any policy change.

Despite their vulnerability to health disparities, few studies have investigated the systemic barriers experienced by HIV-positive undocumented immigrants after the implementation of 2012 RDL and RD.

Limited research, using relatively short timeframes, has found differential implementation of 2012 RDL and RD across the country, granting unequal access to healthcare services to undocumented immigrants or categories of immigrants who were no longer entitled to free care.89-91 No study has examined the entire period from the implementation of 2012 RDL and RD until the enactment of RDL 7/2018, which was intended to reinstate universal health coverage, including among undocumented immigrants, in the

country.92 Furthermore, few studies have researched the barriers immigrants (documented and undocumented) encounter while accessing appropriate healthcare services in Spain.93-95 There has been a small but increasingly vocal call for more data on immigrants’ experience with regard to healthcare access in Spain.91,96,97

Specific Aims

This brief review demonstrates that immigrants are disproportionally affected by HIV in Spain and, possibly, by the new austerity measures enacted after the 2008 financial crisis. Against this backdrop, this dissertation sought to examine how the 2012 RDL and RD were implemented at the regional level across

Spain and to explore the healthcare experience of HIV-positive immigrants in Spain following the enactment of 2012 RDL and RD. This dissertation utilized a mixed methods approach and encompassed 3 distinct but interrelated studies: a study on policy implementation, an epidemiologic exploration of the effect of the 2012 RDL and RD on HIV diagnosis, and a qualitative study on immigrants’ experiences.

Together, these studies were aimed at informing the policy and public health discourse on how to improve the health of immigrants – and by extension, the whole population – in Spain.

The specific aims of the three studies were as follows:

Specific Aim 1: To examine the legal and regulatory actions taken at the regional level in 7 ACs (Andalucía,

Aragón, Basque Country, Castilla La-Mancha, Galicia, Madrid, and Valencia) after the adoption of RDL

16/2012 and RD 1192/2012 (April and August 2012) until the enactment of RDL 7/2018 (July 2018) and evaluate their impact on access to both general healthcare and HIV services among undocumented immigrants through policy implementation analysis of published national and regional documents and key informant interviews.

Specific Aim 2: To investigate the prevalence of LHD among immigrants living in Spain versus native- born Spaniards from 2010 to 2015 (before and after the 2012 health reform) using data from the Cohort of the Spanish AIDs Research Network (CoRIS), a multicenter study of HIV-positive patients across Spain.

Specific Aim 3: To investigate systemic barriers encountered by HIV-positive immigrants while initially accessing healthcare services, and their personal experiences as HIV-positive individuals, via a qualitative study based on semistructured interviews.

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17. Chauvin P, Parizot I, Simonnot N. Access to Health Care for Undocumented Migrants in 11 European Countries. Médicins du Monde European Observatory on Access to Health Care. 2009; 154. inserm-00419971 18. Burns MF, Imrie J, Nazroo JY, Johnson AM, Fenton KA. Why the(y) wait? Key informant understandings of factors contributing to late presentation and poor utilization of HIV health and social care services by African migrants in Britain. AIDS Care. 2007;19(1):102-108. 19. Montaner JS. Adverse consequences for the human immunodeficiency virus epidemic in Spain following the new legal health framework on the illegal immigrants — save today and pay more tomorrow. Article in Spanish. Enferm Infecc Microbiol Clín. 2012;30(8):431-432. 20. Assessing the burden of key infectious diseases affecting migrant populations in the EU / EEA. European Centre for Disease Prevention and Control (ECDC). 2014. https://www.ecdc.europa.eu/en/publications-data/assessing-burden-key-infectious-diseases- affecting-migrant-populations-eueea 21. Alvarez-del Arco D, Monge D, Azcoaga A, et al. HIV testing and counselling for migrants populations in high-income countries: a systematic review. Eur J Public Health. 2012;23(6):1039-1045. 22. Thematic report: migrants. Monitoring implementation of the Dublin Declaration on Partnership to Fight HIV/AIDS in Europe and Central Asia. European Centre for Disease Prevention and Control (ECDC). 2012. https://eurotox.org/wp/wp-content/uploads/ECDC_Thematic-report- Migrants.-Monitoring-implementation-of-the-Dublin-declaration-on-Partnership-to-Fight- HIVAIDS-in-Europe-and-Central-Asia-2013.pdf 23. Migrant health: Sexual transmission of HIV within migrant groups in the EU/EEA and implications for effective interventions. European Centre for Disease Prevention and Control (ECDC). 2013. https://www.ecdc.europa.eu/sites/portal/files/media/en/publications/Publications/Migrant-health- sexual-transmission.pdf 24. Delpech V, Gahagan J. The global epidemiology of HIV. Medicine. 2009;37(7):317-320. 25. Lapostolle A, Massari V, Chauvin P. Time since the last HIV test and migration origin in the Paris metropolitan area, France. AIDS Care. 2011;23(9):1117-1127. 26. Camoni L, Salfa MC, Regine V, et al. HIV incidence estimate among non-nationals in Italy. Eur J Epidemiol. 2007;22(11):813-817. 27. Camoni L, Raimondo M, Regine V, Salfa MC, Suligoi B; Referents of HIV Surveillance System. Incidence of newly HIV diagnosed cases among foreign migrants in Italy: 2006-2013. J AIDS Clin Res. 2015. https://www.hilarispublisher.com/abstract/incidence-of-newly-hiv-diagnosed- cases-among-foreign-migrants-in-italy-20062013-30852.html 28. Burns FM, Arthur G, Johnson AM, Nazroo J, Fenton KA. United Kingdom acquisition of HIV infection in African residents in London: more than previously thought. AIDS. 2009;23(2):262– 266. 29. HIV in the United Kingdom: 2014 Report. Public Health England Agency 2014. Accessed at https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/401662/2014_PHE _HIV_annual_report_draft_Final_07-01-2015.pdf 30. Pezzoli MC, El Hamad I, Scarcella C, et al. HIV Infection among illegal migrants, Italy, 2004- 2007. Emerg Infect Dis. 2009;15(11):1802-1804. 31. Hernando V, Alvarez-del Arco D, Alejos B, et al. HIV infection in migrant populations in the European union and European economic area in 2007–2012: an epidemic on the move. J Acquir Immune Defic Syndr. 2015;70(2):204-211. 32. Ministry of Health, Social Services and Equality (MSSSI). Informe annual del Sistema Nacional de Salud 2010. http://www.msssi.gob.es/organizacion/sns/planCalidadSNS/pdf/equidad/Informeanual2010/Infor me_2010_SNS_WEB.pdf 33. Ministry of Health, Social Services and Equality (MSSSI). Informe annual del Sistema Nacional

de Salud 2013. http://www.msssi.gob.es/organizacion/sns/planCalidadSNS/pdf/equidad/Informeanual2013/Infor me_2013_SNS_WEB.pdf 34. Ministerio de Sanidad, Servicios Sociales E Igualdad (MSSSI) y Ministerio de Economía y Competitividad. Vigilancia Epidemiológica del VIH y SIDA en España: Sistema de información sobre nuevos diagnósticos de VIH registro nacional de casos de SIDA. 2015. https://www.mscbs.gob.es/ciudadanos/enfLesiones/enfTransmisibles/sida/vigilancia/InformeVIH _SIDA_2015.pdf 35. Castilla J, Sobrino P, Del Amo J; EPI-VIH Study Group. HIV infection among people of foreign origin voluntarily tested in Spain. A comparison with national subjects. Sex Transm Infect. 2002;78(4):250-254. 36. Ministerio de Sanidad y Servicios Sociales e Igualdad (MSSSI). Vigilancia Epidemiológica del VIH/SIDA en España. Actualización. https://www.mscbs.gob.es/ciudadanos/enfLesiones/enfTransmisibles/sida/vigilancia/InformeVIH Sida_Junio_2011.pdf 37. Caro-Murillo AM, Gutiérrez F, Ramos JM, et al; CoRIS. HIV infection in immigrants in Spain: Epidemiological characteristics and clinical presentation in the CoRIS Cohort (2004–2006). Article in Spanish. Enferm Infecc Microbiol Clín. 2009;27(7):380-388. 38. Schacke MR, Cuellar GI, Castillo JM, et al. Characteristics of HIV-immigrant population under monitoring in an outpatient consultation at a University hospital. NURE Investigacion. 2005. https://www.researchgate.net/publication/26492261_Characteristics_of_HIV- immigrant_population_under_monitoring_in_an_outpatient_consultation_at_a_University_hospit al 39. López de Munain J, Cámara MM, Santamaría JM, Zubero Z, Baraia-Etxaburu J, Muñoz J. Características clínicoepidemiológicas de los nuevos diagnósticos de infección por el virus de la inmunodeficiencia humana. Med Clín (Barc). 2001;117:654-656. 40. Ministerio de Ciencia E Innovacion, Ministerio de Sanidad Y Political Social, y Gobierno de España. Secretaría del Plan Nacional sobre el sida. Situación Epidemiológica del VIH/sida en Inmigrantes. 2009. http://www.msssi.gob.es/ciudadanos/enfLesiones/enfTransmisibles/sida/vigilancia/SituacionVIHI nmigrantes2009.pdf 41. HIV New Diagnoses, Treatment and care in the UK: 2015 Report. Public Health England Agency 2015. https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/469405/HIV_new_ diagnoses_treatment_and_care_2015_report20102015.pdf 42. Del Amo J, Bröring G, Hamers FF, Infuso A, Fenton K. Monitoring HIV/AIDS in Europe's migrant communities and ethnic minorities. AIDS. 2004;18(14):1867-1873. 43. Levy V, Page-Shafer K, Evans J, et al; HeyMan Study Team. HIV-related risk behavior among Hispanic immigrant men in a population-based household survey in low-income neighborhoods of northern California. Sex TransmDis. 2005;32(8):487-490. 44. Olshefsky AM, Zive MM, Scolari R, Zuñiga M. Promoting HIV risk awareness and testing in Latinos living on the U.S.-Mexico border: the Tu No Me Conoces social marketing campaign. AIDS Educ Prevent. 2007;19(5):422-435. 45. Ehrlich SF, Organista KC, Oman D. Migrant Latino day laborers and intentions to test for HIV. AIDS Behav. 2007;11(5):743-752. 46. Fernández MI1, Collazo JB, Bowen GS, Varga LM, Hernandez N, Perrino T. Predictors of HIV testing and intention to test among Hispanic farmworkers in South Florida. J Rural Health. 2005;21(1):56-64. 47. Nikolopoulos G, Arvanitis M, Masgala A, Paraskeva D. Migration and HIV epidemic in Greece. Eur J Public Health. 2005;15(3):296-299.

48. MacPherson DW, Zencovich M, Gushulak BD. Emerging pediatric HIV epidemic related to migration. Emerg Infect Dis. 2006;12(4):612-617. 49. Prost A, Elford J, Imrie J, Petticrew M, Hart GJ. Social, behavioural, and intervention research among people of sub-saharan African origin living with HIV in the UK and Europe: literature review and recommendations for intervention. AIDS Behav. 2008;12(2):170-194. 50. Saganic L, Carr J, Solorio R, Courogen M, Jaenicke T, Duerr A. Comparing measures of late HIV diagnosis in Washington State. AIDS Res Treat. 2012;2012:182672. 51. Tossas-Milligan KY, Huner-Mellado RF, Mayor AM, Fernandez-Santos DM, Dworkin MS. Late HIV testing in a cohort of HIV-infected patients followed in Puerto Rico. P R Health Sci J. 2015;34(3):148-154. 52. Antinori A, Coenen T, Costagiola D, et al; European Late Presenter Consensus Working Group. Late presentation of HIV infection: a consensus definition. HIV Med. 2011;12(1):61-64. 53. Girardi E, Sabin CA, Monforte AD. Late diagnosis of HIV infection: epidemiological features, consequences and strategies to encourage earlier testing. J Acquir Immune Defic Syndr. 2007;46(1):S3-S8. 54. Fisher M. Late diagnosis of HIV infection: major consequences and missed opportunities. Curr Opin Infect Dis. 2008;21(1):1-3. 55. Valdiserri RO. Late HIV diagnosis: bad medicine and worse public health. PLoS Med. 2007;4(6):e200. 56. Bisset LR, Cone RW, Huber W, et al. Highly active antiretroviral therapy during early HIV infection reverses T-cell activation and maturation abnormalities. Swiss HIV Cohort Study. AIDS. 1998;12(16):2115-2123. 57. Mugavero MJ, Castellano C, Edelman D, Hicks C. Late diagnosis of HIV infection: the role of age and gender. Am J Med. 2007;120(4):370-373. 58. MacCarthy S, Hoffmann M, Ferguson L, et al. The HIV care cascade: models, measures and moving forward. J Int AIDS Soc. 2015;18:19395. 59. Cohen MS, Chen YQ, McCauley M, et al ; HPTN 052 Study Team. Prevention of HIV-1 infection with early antiretroviral therapy. N Engl J Med. 2011;365(6):493-505. 60. Ndawinz DA, Chaix B, Koulla-Shiro S, et al. Factors associated with late antiretroviral therapy initiation in Cameroon: a representative multilevel analysis. J Antimicrob Chemother. 2013;68(6):1388-1399. 61. Danel C, Moh R, Gaet al ; The TEMPRANO ANRS 12136 Study Group. A trial of early antiretrovirals and isoniazid preventive therapy in Africa. N Engl J Med. 2015;373(9):808-822. 62. Lundgren JD, Babiker AG, Gordin F, et al; INSIGHT START Study Group. Initiation of antiretroviral therapy in early asymptomatic HIV infection. N Engl J Med. 2015;373(9):795-807. 63. Anglemyer A, Rutherford GW, Baggaley RC, Egger M, Siegfried N. Antiretroviral therapy for prevention of HIV transmission in HIV-discordant couples. Cochrane Database Syst Rev. 2011;8:CD009153. 64. Zinkernagel C, Ledergerber B, Battegay M, et al. Quality of life in asymptomatic patients with early HIV infection initiating antiretroviral therapy. Swiss HIV Cohort Study. AIDS. 1999;13(12):1587-1589. 65. Kranzer K, Zeinecker J, Ginsberg P, et al. Linkage to HIV care and antiretroviral therapy in Cape Town, South Africa. PLoS ONE. 2010;5(11):e13801. 66. Lawn SD, Harries AD, Wood R. Strategies to reduce early morbidity and mortality in adults receiving antiretroviral therapy in resource-limited settings. Curr Opin HIV AIDS. 2010;5(1):18- 26. 67. Marcellin F, Abé C, Loubière S, et al; EVAL Study Group. Delayed first consultation after diagnosis of HIV infection in Cameroon. AIDS. 2009;23(8):1015-1019. 68. Ministerio de Ciencia E Innovacion, Ministerio de Sanidad, Political Social E Igualdad, Gobierno de España., et al. Diagnóstico tardío de la infección por VIH: Situación en España. 2011. http://www.caib.es/sacmicrofront/archivopub.do?ctrl=MCRST2185ZI100360&id=100360

69. Aday LA, Andersen R. A framework for the study of access to medical care. Health Serv Res. 1974;9(3):208-220. 70. Ensor T, Cooper S. Overcoming barriers to health service access: influencing the demand side. Health Policy Plan. 2004;19(2):69-79. 71. Donabedian A. Models for organizing the delivery of personal health care services and criteria for evaluating them. Milbank Memorial Fund Q. 1972;50(4):103-154. 72. Freeborn DK, Greenlick MR. Evaluation of the performance of ambulatory care systems: research requirements and opportunities. Med Care. 1973;11(2):68-75. 73. Parker AW. The dimension of primary care: blueprint for change. In: Andreopoulos S, ed. Primary Care: Where Medicine Fails. Wiley; 1974:15-77. 74. Penchansky R, Thomas JW. The concept of access: definition and relationship to consumer satisfaction. Med Care. 1981;19(2):127-140. 75. Khan AA, Bhardwaj SM. Access to health care. A conceptual framework and its relevance to health care planning. Eval Health Prof. 1994;17(1):60-76. 76. Andersen RM. Revisiting the behavioral model and access to medical care: does it matter? J Health Soc Behav. 1995;36(1):1-10. 77. Rogers A, Flowers J, Pencheon D. Improving access needs a whole systems approach. And will be important in averting crises in the millennium winter. BMJ. 1999;319(7214):866-867. 78. Gulliford M, Figueroa-Munez J, Morgan M, et al. What does ‘access to health care’ mean? J Health Serv Res Policy. 2002;7(3):186-188. 79. Chapman JL, Zechel A, Carter YH, Abbott S. Systematic review of recent innovations in service provision to improve access to primary care. Br J Gen Pract. 2004;54(502):374-381. 80. MacKinney AC, Coburn AF, Lundblad JP, McBride T, Mueller K, Watson S. Access to rural health care: a literature review and new synthesis. Rural Policy Res Inst. 2014. https://www.rupri.org/?library=access-to-rural-health-care-a-literature-review-and-new-synthesis- report-prepared-by-the-rupri-health-panel-august-2014 81. Peters DH, Garg A, Bloom G, Walker DG, Brieger WR, Rahman MH. Poverty and access to health care in developing countries. Ann N Y Acad Sci. 2008;1136:161-171. 82. Jacobs B, Ir P, Bigdeli M, Annear PL, VN Damme W. Addressing access barriers to health services: an analytical framework for selecting appropriate interventions in low-income Asian countries. Health Policy Plan. 2012;27(4):288-300. 83. World Health Organization (WHO). Health Systems: Improving Performance. The World Health Report 2000. http://apps.who.int/gb/archive/pdf_files/WHA53/ea4.pdf 84. Garcia-Subirats I, Vargas I, Mogollón-Pérez AS, et al. Barriers in access to health care in countries with different health systems. A cross-sectional study in municipalities of central Colombia and north-eastern Brazil. Soc Sci Med. 2014;106:204-213. 85. Sibley LM, Weiner JP. An evaluation of access to health care services along the rural-urban continuum in Canada. BMC Health Serv Res. 2011;11:20. 86. Syed ST, Gerber BS, Sharp LK. Traveling towards disease: transportation barriers to health care access. J Community Health. 2013;38(5):976-993. 87. Derose Kp, Escarce JJ, Lurie N. Immigrants and health care: sources of vulnerability. Health Aff. 2007;26(5):1258-1268. 88. Comelles JM, Bailo L, Allué X, Digiacomo SM. Health insurance reform in Spain. Departament d’Antropologia, Filosofia i Treball Social Universitat Rovira i Virgili, Tarragona, Spain. 2011. 89. Cimas M, Gullon P, Aguilera E, Meyer S, Freire JM, Perez-Gomez B. Healthcare coverage for undocumented immigrants in Spain: regional differences after Royal Decree Law 16/2012. Health Policy. 2016;120(4):384-395. 90. Perez-Molina JS, Pulido F. Como esta afectando la aplicación del nueva marco legal sanitario a la asistencia de los immigrantes infectados por el VIH en situación irregular en España? Enferm Infecc Microbiol Clin. 2015;33(7):437-445.

91. Peralta-Gallego L, Gené-Badia J, Gallo P. Effects of undocumented immigrants’ exclusion from health care coverage in Spain. Health Policy. 2018;122(11):1155-1160. 92. Ministerio De La Presidencia, Relaciones Con Las Cortes E Igualidad. Real Decreto-ley 7/2018 sobre el acceso universal al Sistema Nacional de Salud. Madrid, Spain: Agencia Estatal Boletín del Estado, 2018. https://www.boe.es/diario_boe/txt.php?id=BOE-A-2018-10752 93. European HIV Early Diagnosis and Access to Treatment Project (Euro HIV-EDAT) Project. Access to HIV testing and linkage to care for migrants populations in Europe 2014-2017. National Report on HIV and migrants in Europe. https://eurohivedat.eu/arxius/ehe_docsmenu_docsmenu_doc_115- National_Reports_Synthesis_WP8_Euro_HIV_EDAT_Finale_version.pdf 94. Ndumbi P, Del Romero J, Pulido F, et al; aMASE Research Group. Barriers to health care services for migrants living with HIV in Spain. Eur J Public Health. 2018;28(3):451-457. 95. Pérez-Urdiales I, Goicolea I, San Sebastián M, Irazusta A, Linander I. Sub-Saharan African immigrants women’s experiences of (lack of) access to appropriate healthcare in the public health system in the Baswue Country, Spain. Int J Equity Health. 2019;18(1):59. 96. Urtaran-Laresgoiti M, Fonseca Peso J, Nuño-Solinís R. Solidarity against healthcare access restrictions on undocumented immigrants in Spain: the REDER case study. Int J Equity Health. 2019;18(1):82. 97. Llop-Girones A, Vargas Lorenzo I, Garcia-Subirats I, Aller MB, Vázquez Navarrete ML. Immigrants’ access to health care in Spain: a review. Rev Esp Salud Publica. 2014;88(6):715- 734.

Chapter 2: A Policy Implementation Analysis on Access to Healthcare among Undocumented

Immigrants in 7 Autonomous Communities of Spain, 2012 – 2018

Introduction

In recent years, Spain implemented multiple austerity measures as a result of the 2008 financial crisis.1-3 As part of this cost-saving effort, the Spanish government enacted Royal Decree Law (RDL, carrying the force of law) 16/2012 and Royal Decree (RD, carrying the force of regulation) 1192/2012, which made changes to the previously practiced universal healthcare system and excluded undocumented immigrants from publicly funded, free healthcare services.1,2,4 Economic crises have been found to increase the burden of illness in the populations of affected countries, especially among immigrants,4 caused by various stressors (eg, unemployment, delay in seeking health care or preventive care) as a consequence of economic hardship.5-7

Of 31 European Union (EU)/European Free Trade Association (EFTA) member countries, 22

(71%) identify immigrants as an especially vulnerable population to HIV.11 HIV is an especially important area of concern in Spain, as it has one of the highest incidences of infection among EU countries (39,352 new cases from 2006 to 2015, ranking 4th in EU/EFTA).12 No precise data are available on the number of HIV-positive undocumented immigrants in Spain. However, according to a 2015 report from the Spanish Ministry of Health, Social Services and Equality (Ministerio de Sanidad, Servicios

Sociales E Igualdad or MSSSI), a total of 3366 newly diagnosed HIV cases (7.2 cases per 100,000) were registered nationwide in 2014, and 32% of those cases were among immigrants.2

Various social, economic, cultural, and legal factors increase vulnerability to HIV infection in immigrant populations.13-19 Social and economic difficulties encountered in the host country often result in inconsistent condom use, multiple sexual partners, high alcohol consumption, drug injection,20-24 sexual exploitation,25 and prioritization of food and housing over health.13 Barriers to healthcare access also increase the vulnerability of immigrants to HIV, chief among them laws and regulations that prevent immigrants from accessing services.13,14,26,27 RDL 16/2012 excluded approximately 500,000

undocumented immigrants from the national health system.2 This posed a risk to the health of undocumented immigrants, which in turn may threaten the health of the general population.1,29 For example, studies have shown that HIV-positive undocumented immigrants tend to delay accessing necessary health care.1,13 Even though undocumented immigrants in Spain can purchase health insurance, the premiums are generally unaffordable,7 especially as 40% percent of documented immigrants are unemployed.30

In December 2013, in an effort to tighten epidemiologic surveillance of diseases, MSSSI implemented RD 576/2013, resulting in a regulatory change regarded as a “Healthcare Interventions in

Situations of Public Health Risk” approved by Interterritorial Council of the National Health System. This new RD declared that all individuals, including undocumented immigrants, were once again entitled to free health care whenever an identified infectious disease, such as HIV/AIDS, was subject to epidemiologic control.31 In theory, this change should have allowed HIV-infected undocumented immigrants to regain access to necessary free treatment and care. However, there was much confusion around the legal entitlements created under the new regulation. This was not unique to Spain. In many

European countries, access to health care has been denied to immigrants despite their legal entitlement to services.4 Undocumented immigrants have been denied access to health care due to lack of legal awareness in their communities, provider ignorance of laws regarding their protection, and unwillingness to treat among medical professionals due to deep-seated discrimination and racism.32,33 Thus, it was unclear the extent to which RD 576/2013 translated into actual access to services among undocumented immigrants.

Given the highly decentralized health system in Spain, the aim of this study was to provide a comparative policy implementation analysis on access to free general healthcare services and HIV care, granted to undocumented immigrants in Spain from the implementation of RDL 16/2012 until the enactment of RDL 7/2018, which was intended to reinstate universal health coverage, including among undocumented immigrants, in the country.35

Methods

Interviews

All ACs were contacted and interviews were requested with public health specialists affiliated with the regional government or relevant nongovernmental organizations (NGOs). Governmental specialists were recruited by one of the leading professional in the field of HIV in Spain. Representatives of NGOs were contacted by the principal researcher and selected due to their active participation in the field. Interviews were conducted with representatives of 7 ACs, specifically Andalucía, Aragón, Basque

Country, Castilla-La Mancha, Galicia, Madrid, and Valencia.

To conduct the interviews, we developed a semistructured guide (see Appendix B.I). The interviews focused on the level of implementation of 2012 RDL and RD, the level of access granted to undocumented immigrants, and the consequent development of laws and governmental instructions in each AC. We also discussed the implementation processes and monitoring mechanisms utilized by each

AC while putting in practice the national policy changes in 2012, and consecutive regional governmental instructions . The timeframe covered in the analysis was from April 2012 (enactment of RDL 16/2012) to

July 2018 (enactment of RDL 7/2018).

The interview guide was first developed in English and went through forward and backward translation to make sure that both the English and Spanish versions were identical. The interview guide consisted of 3 parts, specifically: 1) Identifying how the 2012 RDL and RD were adopted, implemented, and monitored; 2) Identifying how the interterritorial health council agreement of 2013 (“Healthcare

Interventions in Situations of Public Health Risk”) was adopted, implemented, and monitored; and 3) An open-ended exploration of the regional policy changes that took place until July 2018 and their impact.

Participants received the interview guide prior to the discussion and were requested to provide relevant documents supporting their statements. Interviews were conducted in person or remotely via video conferencing, with the exception of one participant who answered the interview questions electronically. All interviews were conducted by the research team in Spanish and fully recorded.

Verbatim transcription was performed in Spanish by a professional agency.

In total, 9 public health specialists in the field of HIV care from Spain were interviewed between

June 2018 and August 2019. Four were public health officials representing regional governments

(Andalucía, Aragón, and Basque Country), 3 were heads of local NGOs (Valencia and Madrid), and 4 were experts from local NGOs (Castilla-La Mancha, Galicia, and Madrid). In 4 ACs (Basque Country,

Galicia, Madrid, and Valencia), more than 1 person was interviewed to receive more in-depth information. Interviews lasted from 30 minutes to 2 hours. Each participant was interviewed once. The average length of time in public health among the interviewees was 11 years.

Document review

We performed a review of the published policies mentioned or provided by the interviewees after

April 2012 that related to entitlements granted to undocumented immigrants for free general healthcare services and/or HIV care in the 7 ACs of Spain. The governmental documents were published between

April 20, 2012 and July 30, 2018 in both Spanish and Galician. This study extends prior research by

Cimas et al37 and Perez-Molina et al 38 with a focus on systematic barriers to free general and HIV- specific health care encountered by undocumented immigrants during the 6 years after universal health care for undocumented immigrants was rolled back. Upon initial review of the governmental documents, a summary of the findings was created for each AC in Spanish and sent back to the interviewees for confirmation or comment.

According to the main systematic barrier described by the interviewees and presented in all official documents, we developed a model (see Figure 1) to assess the severity of the limitation on free general healthcare access among undocumented immigrants. Five categories of access to free general healthcare services were as follows: Low Access, Medium-Low Access, Medium Access, Medium-High

Access, and High Access. Specific access indicators developed per level were based on the percentage of the study timeframe during which access to free general healthcare services was granted to all undocumented immigrants (without categorization, eg, women, minors, human trafficking victims, and asylum seekers). They were also based on the number of months of proven residency required (during the

same percentage of the study timeframe) by an AC, and if any type of identification was required. The term “free general health care” refers to services granted free of charge for all health needs of undocumented immigrants (aside from HIV care). The term “free healthcare access” refers both to general care services and HIV care (see Table 1).

The percentage of the study timeframe that access to free general health care was granted to all undocumented immigrants was calculated according to the following information: 1) Total study timeframe was calculated in months from April 20, 2012 to July 30, 2018 – a total of 75 months; 2) It was assumed that all undocumented immigrants were still provided free general healthcare coverage during the time between the enactment of 2012 RDL (April 20, 2012) and the first instruction issued in an AC to implement the RDL and RD; 3) Months were calculated from the first regional instruction granting free general healthcare coverage specifically to all undocumented immigrants in an AC until the end of the study timeframe (July 30, 2018); 4) Months calculated from points 2 and 3 were added, thus determining total time free general healthcare coverage was provided to all undocumented immigrants in any respective AC; 5) To determine the percentage of time each AC provided free general healthcare coverage to all undocumented immigrants, total months calculated in point 3 were divided by the total study timeframe (75 months) and multiplied by 100; 6) All calculations were made to ±10 days to round up to a month, if needed.

There was no need to develop a separate model to analyze level of access to HIV care for undocumented immigrants, because granting full access to free general healthcare services (the same as those available to citizens) includes HIV treatment. Thus, the model described in Figure 1 was applied to analyze the level of access to HIV care.

Coding assumptions

For the purpose of this study, the following assumptions were made while coding data: 1) If type of identification was not specifically indicated by governmental instructions, it was assumed that a patient needed to show proof during registration for healthcare coverage; 2) If a governmental instruction stated

that a patient should have met a specific requirement but did not explain how it should be proven, it was assumed that documentary proof would have to be provided and verbal declaration would not suffice; 3)

In case of the need for “Identification” and a “Proof of Residency Certificate,” it was assumed that a patient had to provide these documents; 4) If the possibility of exemption was not indicated in a governmental instruction, it was assumed that there was no exemption provided for the required document; 5) If free full coverage was provided to undocumented immigrants, it was assumed that HIV care was included in the plan (unless otherwise stated); and 6) It was assumed that HIV care was provided when a governmental instruction referred to coverage of diseases under epidemiologic surveillance, infectious illnesses, diseases of obligatory declaration, diseases impacting public health, or diseases creating social emergency.

Coding of access provided to undocumented immigrants in each AC was based only on the information written in the provided governmental documents, not on verbal testaments by any of the interviewees.

Results

Level of administrative barriers to accessing free general and HIV healthcare services among undocumented immigrants

According to the 2012 RDL and RD, undocumented immigrants were to be denied access to free healthcare services.1,2,4 However, due to the decentralized nature of the Spanish health system, the implementation of this national policy depended on the interpretation by each AC. The results below describe the governmental instructions developed by each AC from April 2012 to July 2018 regarding healthcare access for undocumented immigrants. Across ACs, 12 of 22 (55%) governmental instructions required minimum months of proven residency in the region to access free general healthcare services.

All ACs aside from Andalucía required some type of identification. All ACs aside from Galicia enacted at least 1 instruction that granted access to free general health care to all undocumented immigrants at one point during the study timeframe. Using the model in Figure 1, Table 2 details the policy actions in each

AC during the study time frame (total of 75 months), as well as their effects on access to free general health care among undocumented immigrants. Variations in access to HIV care are also noted in Table 2.

Additionally, comments on access to free general health care or HIV care, from interviewees of each AC that might not have been clearly demonstrated by issued regional instructions, however, provided additional input on observed on-ground practices, are presented in Table 3. Comments demonstrated how each representative of the AC (interviewed public official or NGO member) played their part to provide free health care to everyone in need, despite undocumented immigrant legal entitlements to such care described in the regional instructions detailed in the sections below.

High access

Access level indicators: Regional governmental instructions highlighted the right of all undocumented immigrants (without categorization, eg, pregnant women, minors, refugees, asylum seekers, cases of accidents or serious illness) to free general healthcare services and specifically stated that any type of identification and proof of residence in the AC was not required during the study timeframe.

Andalucía

Among the 7 ACs, Andalucía provided the highest access to free general healthcare services for undocumented immigrants, with the fewest systematic barriers (based on issued regional governmental instruction). According to the interviewee, Andalucía issued only 1 governmental instruction between

April 2012 and July 2018. An official regional governmental instruction was issued on June 6, 2013 by the regional Ministry of Social Welfare (Consejería de Salud y Bienestar Social) providing temporary general healthcare assistance as part of the Public Health System of Andalucía, specifically for undocumented immigrants who earned a minimum wage or who were not covered by any other health insurance.39 No proof of residency in the AC or identification card was required. Participants had to sign 2 additional forms that were provided by the administrator of a healthcare center and had to provide 1

additional document themselves (see Table 2). The access was provided for up to 12 months with the possibility of an extension if economic hardship persisted.

Medium-high access

Access level indicators: Regional governmental instructions highlighted the right of all undocumented immigrants (without categorization) to free general healthcare services and required proven residency of

0 to 3 months during 76% to 90% of the study timeframe; and required any type of identification.

Basque Country

Basque Country provided medium-high access to free general healthcare services for undocumented immigrants (based on issued regional governmental instruction). The AC issued 3 governmental instructions, 1 decree, and 1 order between April 2012 and July 2018 in order to provide access to free general healthcare services to everyone in the AC. On June 26, 2012, Basque Country issued Decree 114/201252 to provide free general healthcare services to people who were no longer insured by any other public healthcare services and met the requirements set by the AC. The decree did not mention entitlements granted specifically to undocumented immigrants, nor did it mention cases of uninsured patients with communicable diseases, including HIV.

Decree 114/2012 was partially suspended on July 24, 2012, by the constitutional tribunal. The suspension was partially lifted on December 12, 2012, with the copayment of medications removed and the rest left for consideration. However, the decree was again almost fully suspended on December 20,

2017, because it was considered to be outside of the competencies of the AC to give free healthcare services to all people otherwise not covered by 2012 RDL and RD.53 An order with no legislative power was issued on July 4, 2013, with almost identical governmental instructions as Decree 114/2012.54 Two subsequent governmental instructions issued on August 22, 201355 and September 30, 2013,56 were specifically dedicated to providing access to free general healthcare services to undocumented immigrants who were no longer insured by any other public healthcare services and who earned a minimum wage.

Both governmental documents highlighted their right to access general free healthcare services regardless of whether they met the pre-established 1-year residency requirement, especially the individuals seeking care who fell under the special categories of pregnant women, minors, and in cases of accidents, serious illness, or infectious diseases.

Under the regional instruction issued on September 30, 2013,56 the undocumented immigrants who did not meet the 1-year residency requirement were assigned family doctors until discharge or until they complied with the requirements of the AC to receive a public insurance card. In January 25, 2018, a separate governmental instruction57 was issued by the AC to decrease the magnitude of the requirements set by the previous regional governmental instructions. This instruction cancelled those of August 22,

2013 and September 30, 2013, and highlighted the entitlement of undocumented immigrants to free healthcare services without a minimum time of residency requirement; however, it did not specifically state language about access to HIV care or communicable diseases. There was no information given on how long the coverage would be provided under the 2018 governmental instructions.

Medium access

0 to 3 months during 51% to 75% of the study timeframe; and required any type of identification.

Aragón

Aragón issued 4 governmental instructions between April 2012 and July 2018. From April 30,

2013 to August 9, 2015, free general healthcare services were provided under regional governmental instruction, which created the Program of Aragón for Social and Public Health Protection (PAPSSP).40

The program did not specifically name undocumented immigrants as beneficiaries but referred to providing free general healthcare services to all people living in Aragón who were not covered by any other health insurance. This governmental document was canceled on August 9, 2015, by a new

governmental instruction, which specifically indicated the provision of free general healthcare services to undocumented immigrants and decreased the number of years required to be registered in the AC in order to access free care.41 By order of the regional governmental instruction, access was provided up to 1 year with the possibility of an extension (see Table 2 for a list of required documents).

Aragón also created 2 different governmental instructions specifically on diseases that required mandatory reporting or epidemic outbreak (part of epidemiologic surveillance), including HIV. The first regional instruction was created in April 9, 2014,42 and the second was published on May 23, 2017,43 cancelling the earlier round of governmental documents. Neither of the governmental instructions referred to undocumented immigrants specifically, but covered everyone who was not covered under any other health insurance and had a disease that was on the list of “special cases.”42,43 Access was provided until a participant no longer had the disease.

Madrid

Madrid issued 1 official governmental instruction and one internal governmental instruction between April 2012 and July 2018. Both governmental instructions referred specifically to undocumented immigrants. According to the governmental instruction of August 27, 2012, HIV-positive undocumented immigrants could access relevant healthcare services free of charge because HIV was an “Infection of

Obligatory Declaration” and/or was on the “List of Pathologies Included for Healthcare Purposes in

Public Health Cases.”44 All patients who received treatment before August 31, 2012, would continue receiving needed treatment without interruption, even if they were no longer eligible for public health insurance. Access to free general healthcare services for undocumented immigrants was provided only in cases of: 1) emergency due to serious illness or an accident; 2) pregnancy; 3) minor status; 4) asylum seekers; and 5) human trafficking victims. This was amended by the internal regional governmental instruction of 2015 that granted access to free general healthcare services to all types of immigrants, including those without residence permits or health insurance.45

Valencia

Valencia issued 4 governmental instructions and 1 decree law between April 2012 and July 2018.

First, official governmental instruction was published on June 29, 2012.46 The governmental instruction mentioned undocumented immigrants as among the beneficiaries of the free coverage. However, access to free general healthcare services to undocumented immigrants was provided only in cases of: 1) emergency due to serious illness or an accident; 2) pregnancy; 3) minor status; 4) asylum seekers; and 5) human trafficking victims.

A second governmental instruction on July 31, 2013, initiated the “Valencian Program to Protect

Public Health,” which aimed to provide free general healthcare services to all who were not covered by any other public health insurance (it did not single out undocumented immigrants).47 Coverage was provided if a patient could provide all the documents listed in Table 2 or if a patient had an infectious disease of mandatory reporting. The access was provided for up to 12 months with the possibility of an extension if economic hardship persisted. A third governmental instruction was published on July 21,

2015, and cancelled the governmental instruction of July 31, 2013.48 The new governmental instruction named undocumented immigrants as a specific beneficiary of the free coverage and also decreased some requirements they had to meet compared with the prior governmental instruction.47 The fourth governmental document was issued as a decree law52 on July 29, 2015, and was created to give procedural guidance to the implementation of governmental instruction of July 21, 2015.48 The decree law was temporarily suspended in November 201550 and permanently so in December 201751 by the Constitutional

Tribunal because it was considered to be outside of the jurisprudence of the AC to provide free healthcare services to all people otherwise not covered by 2012 RDL and RD. However, according to our interviews, until July 2018 the AC was still providing free healthcare services to undocumented immigrants according to the governmental instructions of July 21, 2015.48

Medium-low access

Access level indicators: Regional governmental instruction highlighted the right of all undocumented immigrants (without categorization) to free general healthcare services and required proven residency of

0 to 3 months during 50% of the study timeframe; and required any type of identification.

Castilla-La Mancha

Castilla-La Mancha issued 1 governmental instruction and 1 order between April 2012 and July

2018. The initial internal governmental instruction was published in January 201358 and provided undocumented immigrants with access to free general healthcare services only to pregnant women and minors. On February 23, 2016, an order was published providing free general healthcare services to all undocumented immigrants.59 Relevant free health care in those with communicable diseases was provided by redirecting an undocumented immigrant to the Department of Infectious Diseases. No specific governmental instructions were provided on how undocumented immigrants could access the care after contacting the department. The coverage was provided for 12 months with the possibility of extension.

Low access

Access level indicators: No regional governmental instructions highlighted the rights of all undocumented immigrants (without categorization) to free general healthcare services during the study timeframe.

Galicia

Galicia had the lowest access to free general healthcare services among undocumented immigrants. Galicia issued 3 governmental instructions and established 1 governmental program between

April 2012 and July 2018 regarding access to free general healthcare services in the AC. The first governmental instruction was published on August 31, 2012, and aimed to provide access to free general healthcare services to everyone in the AC who was no longer covered by any public insurance.60 Access

to free general healthcare services to undocumented immigrants was provided only in cases of: 1) emergency due to serious illness or an accident; 2) pregnancy; 3) minor status; 4) asylum seekers; and 5) human trafficking victims. No specific requirements were set in this governmental instruction.

The second governmental instruction issued on September 21, 2012, established the Galician

Program for Social Protection of Public Health (Programa Galego de Proteccion Social de Saude Publica, or PGPSSP),61 providing the same coverage to undocumented immigrants as the previous governmental document. However, this second instruction clearly stated the specific requirements (among which were

183 days of proof of residency in the AC and a type of identification) a person had to meet in order to be granted access to free general healthcare services.

A third governmental instruction was published on November 9, 2012, specifically aiming to provide free healthcare services to patients with communicable diseases (including HIV).62 This governmental instruction did not specifically name undocumented immigrants as beneficiaries, nor did it provide exemptions, in case the documents requested could not be provided by the patients trying to access care. A regional program was created on March 7, 2013, to provide governmental guidance to employees of healthcare centers on who and how to enroll in PGPSSP.63 Access to PGPSSP was provided for up to 1 year with the possibility of an extension.

Level of access to HIV care

Five of 7 ACs (aside from Galicia and Madrid) fell under assumption number 1 described in the methods section; specifically, “when all undocumented immigrants were granted access to free healthcare coverage it was assumed that access to HIV care was also granted during the same time.” As in case of free general healthcare access, Andalucía provided high access to free HIV care to all undocumented immigrants; Basque Country provided medium-high access; Aragón and Valencia provided medium access; and Castilla-La Mancha provided medium-low access to all HIV-positive undocumented immigrants according to the time the ACs granted free general healthcare access to all undocumented immigrants.

Only Aragón and Galicia issued separate instructions dedicated to providing free healthcare coverage to everyone who had an infectious disease controlled under epidemiologic surveillance. Despite separate instruction for providing care to everyone with the infectious diseases,42 Aragón still fell into medium access category, as the total time free general healthcare coverage was provided to all undocumented immigrants did not exceed 75% of the study timeframe. In contrary, although Galicia was considered an AC that provided low access to free general healthcare coverage to all undocumented immigrants according to the developed model (see Figure 1), in the case of access to HIV care it fell under medium-high access. Because a separate instruction on infectious diseases62 was issued on

November 9, 2012, HIV care was provided to everyone during 92% of the study timeframe. However, according to the instruction,62 proof of residency (without a minimum time requirement) and any type of identification were still required, and HIV care could not be considered as high access even though the percentage exceeded 90%. Madrid provided a high level of access to HIV care to all undocumented immigrants due to the first regional instruction issued in August, 2012,44 which singles out infectious diseases and grants free access to everyone with such illnesses. In Table 2, Galicia is indicated as low access and Madrid as medium access due to the level of free general healthcare services provided to all undocumented immigrants. Due to simple visual presentation, the level of HIV care for these ACs are provided in the same section. However, notes with an actual access level are included.

Policy implementation and monitoring practices in the 7 ACs

Representatives of all 7 ACs provided information on implementation procedures and monitoring mechanisms practiced in their respective jurisdictions while putting in place changes following 2012 RDL and RD, and consecutive regional governmental instructions (see Table 4).

Implementation process

Representatives of 6 of 7 ACs (86%, aside from Castilla-La Mancha) stated that new general governmental instructions were sent electronically to the heads of healthcare centers. Basque Country also

mailed a hard copy of the governmental documents to the heads of the healthcare centers. In Andalucía, a separate governmental document on services provided to HIV-positive patients was sent electronically to the heads of healthcare centers. Basque Country and Castilla-la Mancha did not send out separate information on access to HIV care. Representatives of Aragón, Galicia, and Madrid did not have knowledge about the existence of such a governmental document (we assumed none existed).

Only Basque Country created a summary of requirements set by the new general governmental instructions before disseminating the information to front office employees. Representatives of Aragón,

Castilla-La Mancha, Galicia, Madrid, and Valencia (71%) did not possess information on how new governmental instructions were sent to front office personnel or were not sure of the existence of such communications. In Andalucía, new governmental instructions were published on the intranet of healthcare centers. In Galicia, information to the front office level was mostly delivered through directly changing computer programs utilized by the personnel to determine the eligibility of a patient for healthcare coverage. Trainings (not mandatory to attend) on the changes were provided in Galicia and

Valencia.

Monitoring mechanisms

In Andalucía and Basque Country, no specific monitoring mechanisms were put in place to follow up on the actual implementation of 2012 RDL and RD or the consecutive regional governmental instructions. In Castilla-la Mancha and Galicia, local NGOs provided reports to the regional governments on the barriers encountered by patients while accessing healthcare services in the respective ACs. In

Valencia, a mixed committee of governmental agencies and NGOs was created to monitor implementation of the changes and to resolve problems that occurred along the way. Representatives of

Aragón and Madid did not possess information on the topic.

Implementation of “Healthcare Interventions in Situations of Public Health Risk”

All interviewees were asked about implications and the implementation process of “Healthcare

Interventions in Situations of Public Health Risk” issued by the central government .64 Eight interviewees from 6 ACs stated that the normative order 31 was not implemented in their respective ACs because relevant services were already provided (in cases of diseases listed in the governmental document) to everyone (including undocumented immigrants) under regional governmental instructions issued after

2012 RDL and RD. Contrary to the other interviewees, the representative of Castilla-La Mancha found a need to implement the normative order of the central government,31 as the services were not otherwise provided to HIV-positive undocumented immigrants until February, 2016.59 However, according to the interviewee, this normative order31 was not implemented in Castilla-La Mancha despite requests made to the regional government by an NGO.

Discussion

To our knowledge, this is the first study to document free general and HIV healthcare access in

Spanish ACs from the enactment of 2012 RDL and RD until the adoption of the 2018 decree law, which was intended to reverse the 2012 RDL and RD (with a specific focus on undocumented immigrants). This paper also provided some insights into the implementation processes employed by the 7 ACs under study to establish and monitor the policy changes, which were weak in general and may partly explain the wide- ranging actions across ACs in response to the national regulation and law.

According to the regional documents reviewed and to the designed level of the free healthcare access model among the ACs studied, Andalucía provided the highest access to free healthcare services

(general and HIV care) to all undocumented immigrants during the entire period of the study, without any requirement for identification or proof of residency. Basque Country is considered medium-high access, giving full coverage for all undocumented immigrants during 76% to 90% of the study timeframe.

Aragón, Madrid, and Valencia provided medium access, with full coverage to all undocumented immigrants during 51% to 75% of the study timeframe. Barriers to care (free general and HIV care) in

these ACs were less severe, with a requirement for identification and less than 3 months of residency in the AC during the majority of the study timeframe. Madrid provided high access to HIV care to all undocumented immigrants due to a section dedication to the infectious diseases in the first regional instruction44 issued after 2012 RDL and RD. Castilla-la Mancha provided medium-low access to undocumented immigrants, with full coverage provided to all undocumented immigrants during 50% of the study timeframe. Finally, Galicia provided the lowest access, as access to free general healthcare services was provided only to a limited set of undocumented immigrants (eg, pregnant women, minors, asylum seekers, and human trafficking victims) during the entire study timeframe (not including the time between enactment of 2012 RDL and the first regional instruction). At the same time, Galicia provided medium-high access to all HIV-positive undocumented immigrants due to separate instructions issued by the regional government on free care for persons with infectious diseases.

Aragón and Galicia created governmental instructions specifically for providing free healthcare services to patients with diseases under epidemiologic surveillance (including HIV care). Castilla-La

Mancha, Basque Country, and Madrid either mentioned access to free services for undocumented immigrants with contagious diseases or provided alternative pathways to seek care. Although infectious diseases were not specifically mentioned in the governmental instructions, it was assumed that such access was provided in Andalucía and Valencia free of charge when full coverage was granted to undocumented immigrants.

We found 3 possible explanations for these cross-regional differences: 1) a decentralized structure of healthcare in Spain; 2) differences in regional governing parties; and 3) differences in regional commitment to human rights.

Variance in the level of free access granted to undocumented immigrants in ACs immediately after the enactment of 2012 RDL and RD has been previously reported by Cimas et al.37 We found that these variances continued until 2018, with many more intricacies in regional actions since the earlier paper. The highly decentralized structure of healthcare in Spain might partially explain the differential implementation of 2012 RDL and RD in the 7 ACs.

Cimas et al.37 partly attribute these variances to differences among regional governing political parties. Due to the longer timeframe of this study, many more changes in regional political parties were noted. In Aragón, Castilla-la Mancha, and Valencia, regional political parties in power changed from right wing (governing in 2012) to left wing (governing after 2015). The new governments issued official regional instructions to lower the structural barriers set for undocumented immigrants to access free healthcare services. Andalucía provided the highest access to free healthcare services for undocumented immigrants and, notably, it was governed consistently by the left-wing political party during the course of the study. Galicia provided the lowest access and had a right-wing political party in power throughout the study timeframe. Less drastic changes were present in barriers set by regional governmental documents in

Madrid (medium access; right-wing government) and Basque Country (medium-high access; coalition of right-wing and left-wing coordinated government), where shifts in political parties did not occur during the study timeframe.

Though more accessible alternative pathways to free healthcare services for undocumented immigrants may appear to have been created during time periods in which left-wing parties governed an

AC, governing regional political parties may not fully account for differences across the 7 ACs. In 2 ACs, incremental expansion to healthcare access for immigrants was still present in the case of a governing coalition of political parties (Basque Country) or in the case of a right-wing government (Madrid). Basque

Country was consistently governed by a collaboration of right-wing and left-wing parties, which could explain the somewhat steady medium-high access. In the case of Madrid, it can be argued that a medium level of access during right-wing governing party rule is due to the influence of NGO coalitions and civic organizations that are concentrated in the capital.

A third possible partial explanation for cross-regional differences in the implementation of national healthcare access regulations and laws at the regional level may be seen through a human rights- based lens. The United Nations considers healthcare access to be a human right, and all states have the duty to provide such access to all populations in a nondiscriminatory way, taking into account physical accessibility, affordability of the services, access to information needed to seek care, and the opportunity

to receive or share personal information without fear of a lack of confidentiality.64 Implemented policy changes across the ACs have not been analyzed through application of human rights-based lens; however, opinions shared by the interviewees of this study and preambles of some of the instructions published by the regions do seem to be guided by the notion of that everyone has a right to have access to care.

Specifically, 4 of 9 of our interviewees (from higher access ACs including Basque Country,

Aragón, Andalucía) expressed a sense of responsibility for providing access to free healthcare services to undocumented immigrants. Interviewees from Galicia, Madrid, and Valencia strongly believed that not providing free coverage to undocumented immigrants was a universal human rights violation. One interviewee (Basque Country) specifically referred to providing such access as a human rights issue. In addition, governmental instructions published in 4 of 7 ACs (Andalucía, Aragón, Basque Country,

Valencia) indicated the notion that “everyone has the right to health protection” (which is also guaranteed by the Constitution of Spain) as one of the main rationales of the guidelines.39,41,43,52,57 It is possible to stipulate that sense of universal healthcare access and “Right to Heal” notion is well embedded among professionals dedicated to the health field; however, translating beliefs into practice is not always achievable.

We found a robust civil society to be important in advocating for the healthcare rights of undocumented immigrants in Spain. For example, representatives of NGOs from Galicia, Madrid, and

Valencia also strongly believed that not providing free coverage to undocumented immigrants was a universal human rights violation and was against the Constitution of Spain. All NGO representatives were not satisfied with the adjustments made to 2012 RDL and RD by respective regional governments and were strongly advocating for granting access to free healthcare services to undocumented immigrants without any restrictions. Representatives of NGOs also expressed that, instead of positioning healthcare as a basic human right, some regional governments were providing free healthcare services due to the threat of infectious diseases to the general population. Indeed, that latter rationale was evident in several governmental instructions published during the timeframe of this study (Aragón, Galicia, and

Valencia).40,42,47,60-62 This could also explain why Galicia provided low access to free general healthcare

services, although they provided medium-high access in case of all HIV-positive undocumented immigrants.

The implementation processes of government policies varied across the regions. Data showed that

86% of participants (6 ACs) were aware that developed governmental instructions were sent electronically to all healthcare centers; however, 71% (5 ACs) did not know how that same information was communicated to the front office personnel of local facilities. Only representatives of the Basque

Country stated that a summary of the governmental instructions was sent electronically to the front office staff members of healthcare centers. Separate governmental instructions on the provision of care to HIV- positive patients was sent only in Andalucía. In addition, only Valencia put in place a monitoring mechanism in the form of a committee to oversee the effectiveness of the utilized implementation processes and to address problems as they arose. These results indicate another structural challenge in the rollout of healthcare policies in Spain and calls into action whether the access granted to undocumented immigrants on paper actually translated into practice at the clinic level.65 Further research will be needed to examine policy implementation at a more granular level.

There are some limitations to this study. First, we included only 7 out of 17 ACs; thus, the results might not be generalizable across Spain. All ACs were contacted to be included in the study; however, only 7 opted to participate. One possible reason could be the selected recruitment method, which was limited only to personal relationships of the investigators. Nevertheless, the study consisted of 3

(Andalucía, Madrid, and Valencia) of the 4 biggest ACs by population size.66 In addition, 6 of 7 ACs

(Madrid, Andalucía, Valencia, Aragón, Basque Country, Galicia) were among the 10 ACs of Spain with the largest immigrant populations.66 According to recent statistics, approximately 52% (173,909) of the newly arrived immigrants in Spain (total 333,777) settled in the 7 ACs selected for this study.66 A second limitation of this study may stem from the interview data collected on the implementation processes of adopted governmental instructions in the 7 ACs. As this was a secondary aim of the paper, we did not review further documents or examine implementation fidelity at the local level. More research is warranted in this regard.

This study shows that 2012 RDL and RD have been implemented unevenly across the 7 ACs.

Nonetheless, the results demonstrated that there were many structural barriers hindering the utilization of health care by undocumented immigrants, regardless of the efforts taken by regional governments to grant such access. Discrepancies between national and regional policies, as well as variations across ACs, may be explained by the decentralization of the Spanish healthcare system, the regional political atmosphere, and the preponderance of the human rights perspective in each region. Over time, almost all of the ACs under study passed governmental policies and instructions that granted significantly more access to free healthcare coverage than the 2012 RDL and RD policies enacted by the central government, though many barriers persisted throughout the study timeframe.

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Table 1. Indicators of Level of Free Access for General Health Care in Each AC Level of Access Access Level Indicators Instructions on undocumented immigrants’ right to Identification and Proof of Residency Requirement free general healthcare coverage High Instructions highlighted the right of all undocumented Instructions stated that identification and proof of residency immigrants (without categorization) to free general in the AC were not required during the whole study healthcare services. timeframe.

Medium-High Instructions highlighted the right of all undocumented 1) During 76%-90% of the study timeframe required proven immigrants (without categorization) to free general residency in a respective AC between 0 to 3 months (possible healthcare services during 76%-90% of the study exceptions); timeframe. 2) Any type of identification document (possible exceptions).

Medium Instructions highlighted the right of all undocumented 1) During 51%-75% of the study timeframe required proven immigrants (without categorization) to free general residency in a respective AC between 0 to 3 months (possible healthcare services during 51%-75% of the study exceptions); timeframe. 2) Any type of identification document.

Medium-Low Instructions highlighted right of all undocumented 1) During 50% of the study timeframe required proven immigrants (without categorization) to free general residency in a respective AC between 0 to 3 months; healthcare services during 50% of the study timeframe. 2) Any type of identification document

Low No published instruction highlighted the rights of all N/A undocumented immigrants (without categorization) to free general healthcare services. AC, autonomous community.

Table 2. Level of Barriers to Accessing Free Healthcare Services and/or HIV Care for Undocumented Immigrants in 7 ACs of Spain* Level of Issued Governmental Instructions Access to HIV Access Level Indicators Access and Required Documents** Care Instructions highlighted the Separate Instructions state that right of all undocumented instructions on identification and proof of immigrants (without infectious High accessibility residence in the AC is not categorization) to free diseases or full required anytime during the general healthcare services coverage whole study time frame during the study timeframe provided Andalucía Governmental Instruction of June 100% of the study timeframe. 100% of the study timeframe. Provided full 39 6, 2013 health coverage 1) Signed letter proving that he/she 100% of the is not covered under any other public study health insurance (form attached to timeframe. the instruction); 2) Letter from the country of origin proving that he/she is not covered under any other public health insurance (possible exemption); 3) Signed letter of economic hardship (form attached to the instruction). Separate 1) During 76%-90% of the Instructions highlighted instructions on study timeframe required right of all undocumented infectious proven residency in a immigrants (without diseases or full respective AC between 0 to 3 Medium-high accessibility categorization) to free coverage months (possible exceptions); healthcare general services provided 76%- 2) Required any type of during 76%-90% of the 90% of the identification document study timeframe study (possible exceptions) timeframe Basque A. Decree 114/2012, June 29th, Granted access to free general 1) Required proof of residence Provided full 52 Country 2012 healthcare coverage to all in the AC but without a health coverage 1) Identification; minimum month requirement 81% of the

2) Certificate of 1-year proven undocumented immigrants during 11% of the study study residency in the AC; 81% of the study timeframe. timeframe (in case of expired timeframe. 3) Demonstrate that he/she is earning visa cannot be in Schengen zone minimum wage (provided by a longer than 3 months); 68% of patient); the time required 1-year proof 4) Demonstrate that he/she is not of residence in the AC that covered under any other public could be bypassed; health insurance (provided by a 2) Required identification. patient).

54 B. Order, July 4, 2013 1) Identification; 2) Certificate of 1-year proven residency in the AC; 3) Declare that a participant is earning minimum wage (form attached to the instructions); 4) Declare that he/she is not covered under any other public health insurance (form attached to the instructions); 5) Application form.

C. Governmental Instruction of 55 August 22, 2013 1) Certificate of 1-year proven residency in the AC; 2) Declare that he/she is earning minimum wage; 3) Declare that he/she is not covered under any other public health insurance (form attached to the instructions). Exception: In case the 1-year requirement cannot be met, undocumented immigrants can still receive care through the emergency

room. Specially highlights cases of serious illness, accident, contagious disease, pregnancy, or minor status. Names undocumented immigrants specifically as beneficiary (without categorization).

D. Governmental Instruction of 56 September 30th, 2013 1) Certificate of 1-year proven residency in the AC; 3) Declare that he/she is not covered under any other public health insurance. Exception: In case the 1- year requirement cannot be met, undocumented immigrants can still receive care through the emergency room. A family doctor will be assigned to the individuals until discharge or until the 1-year requirement is met. Specially highlights cases of serious illness, accident, contagious disease, pregnancy or minor status. Names undocumented immigrants specifically as beneficiary (without categorization).

E. Governmental Instruction, 57 January 25th, 2018 1) Identification; 2) Certificate of residency in the AC without specific minimum time requirement (in case of expired visa cannot be in Schengen zone longer than 3 months);

3) Declare that he/she is earning minimum wage (form attached to the instructions); 4) Declare that he/she is not covered under any other public health insurance (form attached to the instructions); 5) Application form. Names undocumented immigrants specifically as beneficiary (without categorization). Separate Instruction(s) highlighted instructions on 1) During 51%-75% of the right of all undocumented infectious study timeframe required immigrants (without diseases or full proven residency in a Medium accessibility categorization) to free coverage respective AC between 0 to 3 general healthcare services provided 51%- months; 2) Required any type during 51%-75% of the 75% of the of identification document study timeframe study timeframe Aragón A. Governmental Instruction of Granted access to free general 1) Required proof of residence Provided full 40 April 30th, 2013 healthcare coverage in the AC 3 months or less health coverage 1) Identification; specifically to all approximately 64% of the study 64% of the 2) Certificate of 6-month proven undocumented immigrants timeframe; study timeframe residency in the AC; 64% of the study timeframe. 2) Required identification. and issued 3) Declare that he/she is not covered separate under any other public health instructions on insurance or is eligible for Convenio infectious Especial67,68 (the coverage based on diseases 69% of copayment [form attached to the the study instructions]); timeframe. 4) Letter from the country of origin proving that he/she is not covered under any other public health insurance which he/she can utilize in Spain (provided by a patient);

5) Tax income from Spain and from the country of origin, showing earned minimum wage (provided by a patient; possible exemption); 6) Presentation of the documents can be exempt after a case-by-case evaluation by a social worker (no instructions provided on the process); 7) Application to the program.

B. Governmental Instruction of April 9, 2014 (Specifically for diseases under Epidemic 42 Surveillance) 1) Identification (possible exemption); 2) Declare that he/she is not covered under any other public health insurance or is eligible for Convenio Especial67,68 (the coverage based on copayment [form attached to the instructions]); 3) Declare that he/she is not covered under any other public health insurance in the country or origin which he/she can utilize in Spain (form attached to the instructions); 4) Signed admission application form from the doctor approving that a patient has/might have a disease that enters in the list of “special cases” (form attached to the instructions);

5) Application to the program.

C. Governmental Instruction of 41 August 7, 2015 1) Identification; 2) Certificate of 3-month proven residency in the AC; 3) Demonstrate that he/she is not covered under any other public health insurance (provided by a patient); 4) Letter from the country of origin proving that he/she is not covered under any other public health insurance which she can utilize in Spain (provided by a patient); 5) Declare that a patient does not possess sufficient economic means (attached to the instructions); 6) Presentation of the documents can be exempt in case it is considered as a need to maintain public health (no instructions provided on the process); 7) Application to the program. Names undocumented immigrants specifically as beneficiary (without categorization).

D. Governmental Instruction of May 23, 2017 (Specifically for diseases under Epidemic 43 Surveillance) 1) Identification;

2) Declare that a patient does not possess economic means (form attached to the instructions); 3) Signed admission application form from the doctor approving that a patient has/might have a disease that enters in the list of “special cases” (form attached to the instructions); 4) Application to the program.

Madrid A. Governmental Instruction, Granted access to free general 1) Required proof of residence Provided full th 44 August 27 , 2012 healthcare coverage in the AC but without minimum health coverage 1) Identification (not in case of specifically to all month requirement during 100% of the minors, pregnant women, human undocumented immigrants 100% of the study timeframe; study trafficking victims, or asylum 63% of the study timeframe. 2) Required identification. timeframe, thus seekers); provided high 2) Certificate proving residency in access to HIV the AC (without a specific time care.*** requirement indicated). Names undocumented immigrants specifically as beneficiary (with categorization). In addition, provided care in case of diseases that enter in the list of the “Infections of Obligatory Declaration” and/or “List of Pathologies Included for Healthcare Purposes in Public Health Cases.”

B. Governmental Instruction, 2015 (Internal document)45 1) Identification (possibility of exemption); 2) Certificate proving residency in the AC (possibility of exemption). Names undocumented immigrants specifically as beneficiary (without categorization).

Valencia A. Governmental Instruction 3/12 Granted access to free general 1) Required proof of residence Provided full 46 June 29th, 2012 healthcare coverage in the AC for 3 months health coverage 1) No requirements listed. specifically to all approximately 51% of the study 51% of the Names undocumented immigrants undocumented immigrants timeframe; study specifically as beneficiary (with 51% of the study timeframe. 2) Required identification. timeframe. categorization).

B. Governmental Program July 47 31st, 2013 1) Identification (temporary exemption); 2) Certificate of 1-year proven residency in the AC; 3) Demonstrate that a patient does not possess sufficient economic means or does not have third party responsible to economically support him/her (provided by a patient); 4) Demonstrate that he/she is not covered under any other public health insurance (provided by a patient) or is eligible for Convenio Especial67,68 (the coverage based on copayment [special form provided]);

5) Letter from the country of origin proving that he/she is not covered under any other public health insurance that he/she can utilize in Spain (provided by a patient); 6) Provide written authorization to the AC to review personal records of a patient applying for the coverage. Names undocumented immigrants specifically as beneficiary (with categorization).

C. Governmental Instructions 48 20/2015 July 21, 2015 1) Certificate of 3-months proven residency in the AC; 2) Demonstrate that he/she is not covered under any other public health insurance or is eligible for Convenio Especial67,68 (the coverage based on copayment [provided by a patient]); 3) Demonstrate that he/she is not covered by the country of origin under any public health insurance or does not have a third party responsible to provide financial support (provided by patient). Names undocumented immigrants specifically as beneficiary (without categorization).

D. Decree-Law 3/15 July 29th, 201549 1) Certificate of 3-months proven residency in the AC; 2) Demonstrate that he/she is not covered under any other public health insurance or is eligible for Convenio Especial67,68 (the coverage based on copayment [provided by a patient]); 3) Demonstrate that he/she is not covered by the country of origin under any public health insurance (provided by a patient). Names undocumented immigrants specifically as beneficiary (without categorization). Separate Instruction(s) highlighted 1) During 50% of the study instructions on right of all undocumented timeframe required proven infectious immigrants (without residency in a respective AC diseases or full Medium-low accessibility categorization) to free between 0 to 3 months; 2) coverage general healthcare services Required any type of provided 50% during 50% of the study identification document of the study timeframe (possible exceptions) timeframe Castilla-La A. Governmental Project, 2013 Granted access to free general 1) Required proof of residence Provided full 58 Mancha (Internal document) healthcare coverage in the AC, but without health coverage 1) Identification; specifically to all minimum month 50% of the 2) Certificate of residency in the AC undocumented immigrants requirement****; study without specific minimum time 50% of the study timeframe. 2) Required identification. timeframe. requirement. Names undocumented immigrants specifically as beneficiary (with categorization).

59 B. Order, February 23rd, 2016

1) Identification; 2) Certificate of residency in the AC without specific minimum time requirement (possible exemption); 3) Signed letter declaring that he/she is not covered under any other public health insurance (form attached to the instructions); 4) Signed letter declaring that he/she is not covered under any other public health insurance from the country of origin (form attached to the instructions); 5) Demonstrate that a patient does not possess sufficient economic means (provided by a patient). Names undocumented immigrants specifically as beneficiary (without categorization). Neither of published Separate instructions highlighted instructions on rights of all undocumented N/A infectious Low accessibility immigrants (without diseases or full categorization) to free coverage general healthcare services provided Galicia A. Governmental Instruction, Granted access to free general Issued separate 60 August 31st, 2012 healthcare coverage to all instructions on 1) Demonstrate that he/she is not undocumented immigrants 6% infectious covered under any other public of the study timeframe. This diseases 92% of health insurance (provided by a 6% refers to the period the study patient); between enactment of 2012 timeframe, thus 2) Demonstrate that he/she is not RDL (April 20, 2012) and the provided covered in the country of origin first instruction issued by the medium-high under any public health insurance AC (August 31st, 2012). No access to HIV (provided by a patient). instruction issued afterwards care.*****

Names undocumented immigrants had granted access to all specifically as beneficiary (with undocumented immigrants categorization). (without categorization).

B. Governmental Instruction (PGPSSP), September 21st, 201261 1) Identification (temporary exemption); 2) Certificate of 183-day proven residency in the AC; 3) Declare that he/she is not covered under any other public health insurance (form attached to the instructions); 4) Letter from the country of origin proving that he/she is not covered under any other public health insurance that he/she can utilize in Spain (provided by a patient);

C. Governmental Instruction, November 9, 2012 (Specifically for diseases under Epidemic 62 Surveillance) 1) Identification; 2) Certificate proving residency in the AC (without specific time requirement indicated); 3) Demonstrate that he/she is not covered under any other public health insurance (provided by a patient).

D. Governmental Program, March 7, 201363 1) Given document is an instruction

on how to register patients into PGPSSP coverage described in the instruction of September 21, 2012.61 Names undocumented immigrants specifically as beneficiary (with categorization).

*Presented data were extracted from the governmental documents provided by the representatives of the 7 ACs participating in this study. **For the purpose of this study, the following points were assumed while coding data given in Table 2: 1) If a requested form is not attached to the governmental instructions it is assumed that a patient is supposed to attain the document and provide it during registration for the coverage; 2) If a document states that a patient should or should not meet a specific requirement, but does not say how it should be proven, it is assumed that some type of form/document (not a verbal declaration) should be provided; 3) In case of Identification and Proof of Residence Certificate requirement, it is assumed that a patient has to provide two documents; 4) If the possibility of exemption is not indicated in this Table, it should be assumed that there is no exemption provided for the given required document (according to the governmental instruction); 5) If full coverage was provided to undocumented immigrants it was assumed that HIV care entered in the plan (unless otherwise stated); and 6) The phrase “Disease Under Epidemiologic Surveillance” is used to refer to the governmental instructions that mention free coverage of any of the following: infectious disease, diseases of obligatory declaration, diseases impacting public health or creating social emergency. ***Madrid has a separate section on infectious diseases in its first regional instruction issued August, 2012, clearly stating that everyone should be provided access to HIV care. However, the same instruction did not grant access to free general healthcare services to all undocumented immigrants (those not HIV-positive); thus, the level of access to free general health care is not in the same category as access to HIV care. For simple visual presentation, details on the level of HIV care in Madrid were provided in the same section of Table 2. ****CLM required proof of residence in the AC, but without a minimum month requirement during 100% of the study timeframe. However, all undocumented immigrants (without categorization) were granted access to general healthcare services only during 50% of the study timeframe; thus, the AC is considered medium-low access. *****Galicia created separate instructions on infectious diseases, granting healthcare access to everyone in such cases, but if only following requirements were met: if patients provided proof of residency, any type of identification, and proof of not being covered by any other insurance. Compared with other ACs, the time and level of free general healthcare services granted to undocumented immigrants were different than those granted for HIV care. Specifically, in Galicia, access level for free general care is considered low whereas access level for HIV care is considered medium-high, according to the designed model in Figure 1. As the instruction62 required presentation of proof of residency and any type of identification, access to HIV care was not considered high even though the calculated percentage is 92%. For simple visual presentation, details on the level of HIV care in Galicia were provided in the same section of Table 2. AC, Autonomous Community; CLM, Castilla-La Mancha; PGPSSP, Galician Social Protection Program of Public Health; RDL, Royal Decree Law.

Table 3. Summary of Remarks Made by the Interviewees* AC Representative Comments Andalucía Governmental official - head of The governmental instruction of 201339 was considered very efficient, because very few governmental organization cases were reported in which a patient was denied access to healthcare services or dedicated to HIV. treatment in Andalucía. Furthermore, even though changes made by 2012 RDL and RD were communicated to the hospitals and healthcare centers (hereinafter referred to as healthcare centers), Andalucía still continued providing free healthcare services to everyone, as they were doing before the health reform.

Aragón Governmental official - specialist in Interviewee stated that there might have been some confusion about which services to governmental organization provide free of charge between December 2012 and April 2013; however, no one was left dedicated to HIV. without access to free healthcare services, specifically referring to HIV-positive undocumented immigrants. Interviewee was not aware of difficulties undocumented immigrants without HIV may have faced while trying to access free general healthcare services. No specific clear regional governmental instructions exist (from April 2012 until August Madrid Two representatives of an NGO. 2018) in Madrid on how to implement 2012 RDL and RD, so each healthcare center The first is a specialist dedicated to made its own interpretation. There were multiple barriers created for undocumented public health and the second immigrants while accessing care due to lack of information within the public sector or by specialist is in the field of HIV the front office personnel of the centers, but everyone was still provided free healthcare from the same NGO. services. 2012 RDL did not impact HIV-positive undocumented immigrants in Madrid, because they could still access free healthcare services. In addition, due to a highly coordinated network of NGOs that work with HIV-positive people, any specific cases that were brought to their attention (by the patients or the healthcare centers) were resolved.

Valencia Two representatives of two There were no regional governmental instructions created specifically regarding different NGOs. The first is the providing care to HIV-positive patients who were not otherwise insured. However, the head of country-wide organization governmental instruction of July 31st, 2013,47 does talk about providing care to patients comprising multiple NGOs working with communicable diseases regardless of whether they meet the requirements set by the in the field of HIV and the second governmental documents. In addition, to tackle administrative barriers the “Protocol for is the secretary to the board of Social Workers Developed to Provide Access to Public Health Services in the country-wide NGO dedicated to Community of Valencia”53 was developed by Valencian Health Insurance Services public health. specifically for social workers in July, 2018, highlighting procedural requirements and groups entitled to access free healthcare services in the AC.

Basque Two governmental officials. The Everyone (official residents of Basque Country or not) were provided access to free Country first is the head of a governmental healthcare services in Basque Country, even though the entitlement might not have been office dedicated to public health granted by governmental instructions issued by the AC. and the second is a governmental specialist in the field of public health and HIV.

Castilla-La Specialist in the field of public 2012 RDL and RD were adopted exactly as developed by the central government. A Mancha health and social inclusion from governmental instruction that was published in January 2013, was not clear on how to countrywide NGO (local office). provide free services to undocumented immigrants in various cases. Specifically, in cases of emergency, serious or chronic illnesses, HIV infection, or even in case of pregnancy or in minor girls who did not possess identification or a proof of residence certificate in the AC.

In 2015, the newly elected left-wing government promised to provide access to free healthcare services to everyone in CLM regardless of their legal status. Thus, an order on February 23, 2016,59 was created. Nevertheless, this order still denied access to free general healthcare services to all undocumented immigrants without identification. Furthermore, as of today, no specific governmental instructions have been created explaining how to provide access to free healthcare services to HIV-positive patients. Consequently, in many cases, representatives of NGOs have to intervene on behalf of undocumented immigrants to prove that they are entitled to such services. Multiple requests have been made to the regional government by local NGOs to create such an official document.

Galicia Two representatives of an NGO. A 2012 RDL and RD were adopted almost exactly in the way they were issued. Galicia specialist in the field of public created very restrictive interpretation of 2012 RDL and RD. PGPSSP61 still provided free health from country-wide NGO general healthcare services to some undocumented immigrants who were not otherwise (local office) and a specialist in the covered by the public health insurance, but the program was not efficiently promoted to field of HIV from the same local the public and to relevant healthcare personnel. Front offices of the healthcare centers office of the NGO. were not aware of the entitlements granted under the program and often representatives of NGOs had to accompany undocumented immigrant to the centers in order to advocate for their rights. *Presented data were extracted from the interviews with the representatives of 7 ACs participating in this study. AC, autonomous community; CLM, Castilla-La Mancha; NGO, nongovernmental organization; PGPSSP, Galician Social Protection Program of Public Health; RD, Royal Decree; RDL, Royal Decree Law.

Table 4. Implementation and Monitoring of the Policy Changes Adopted by the 7 ACs* AC How changes produced by 2012 RDL or RD (and of Were specific implementation monitoring governmental instructions issued afterwards) were mechanism(s) put in place? communicated to the healthcare providers? Andalucía 1) No changes were made due to 2012 RDL and RD in the AC, thus No. nothing was communicated; 2) To communicate governmental instructions of June 6, 2013,39 information was put up in intranets of the healthcare facilities; 3) Information was separately sent (electronically) to healthcare centers explaining that HIV-positive immigrants were still eligible for free healthcare.

Aragón Governmental instructions were sent electronically to coordinators No information could be provided on the topic by the of healthcare facilities. No further information could be provided on interviewee. the topic by the interviewee.

Basque Country Complete hard copy of 2012 RDL and RD (as well as of Regional No. Cases were solved as they occurred. Decree 114/201252 and order of July 3, 201354) was sent to the heads of the governmental health departments. Afterward, the health departments developed and sent (electronically) a summary of all requirements to the heads of healthcare centers. The directors of the healthcare centers emailed that same information to the admissions office and client service departments of the healthcare centers. No governmental instructions were sent specifically on providing care to HIV-positive patients.

Castilla-La No governmental instructions/summary have been created or spread An NGO has been sending reports to the regional Mancha on how to implement changes produced by 2012 RDL and RD. No government about the problems occurring in the AC governmental instructions were sent specifically on providing care while accessing healthcare services. No response was to HIV-positive patients. given to an NGO by the representatives of the regional government. An NGO continues sending the reports monthly.

Galicia Implementation of the changes made by 2012 RDL and RD took the An NGO was reporting every case to the regional standard route practiced in Galicia. Specifically, official government on problems with accessing healthcare governmental instruction was created on how Galicia should apply services after implementation of 2012 RDL and RD. adopted 2012 RDL and RD. This governmental instruction was

published in official website of Galicia (Diario Oficial de Galicia), No response has been given to them by the after which the responsible governmental department forwarded representatives of regional government. same information electronically to EOSICS (Centers for Integrated Attention for Management/Centros de Atencion Integrada para Gestionar). Finally, computer programs were adapted to the new requirements. Trainings were provided about the changes; however, attendance was not mandatory.

Madrid Official governmental instruction (August 27, 2012)44 was created No information could be provided on the topic by the on how Madrid will apply adopted 2012 RDL and RD, which was interviewee. sent electronically to heads of healthcare centers. However, a governmental instruction did not provide detailed guidelines on how to implement changes proposed by the regional government. The same problem was present when DAR and TIR codes were implemented in August, 2015.

Valencia Information on 2012 RDL and RD, and regional governmental No specific monitoring system was put in place from instructions issued afterward, were published on an official 2012 to 2015. After 2015, a mixed committee was governmental website. Information was delivered electronically to formed (Health Council, the Assurance Unit, and the leadership of healthcare centers. Relevant posters were created NGOs) that met every 3 months. During meetings, disseminating the information. The interviewee was not aware of NGOs presented and solved cases of denied coverage how information was further communicated to the front office one by one. Information was kept on how many personnel of the healthcare centers. The interviewee sees the process requests for public insurance cards came in and how of dissemination of the information as problematic because the front many were given out or declined. Information office personnel do not possess a corporate electronic addresses or presented on these meetings showed that there was a corporate phone number. lack of information among employees at healthcare centers. Consequently, the government organized professional trainings for the administrative staff of the healthcare centers regarding active governmental instructions in the AC. *Presented data were extracted from the interviews with the representatives of 7 ACs participating in this study. AC, Autonomous Community; DAR, foreigner without health insurance; EOSICS, Centers for Integrated Attention for Management; NGO, nongovernmental organization; RD, Royal Decree; RDL, Royal Decree Law; TIR, transient without residence permit.

Figure 1. Model of Level of Access to Free General Healthcare Services for Undocumented Immigrants.

FREE HEALTH COVERAGE FOR ALL UNDOCUMENTED YES IMMIGRANTS* (≥50%** OF THE TIMEFRAME)

ID IS REQUIRED NO

YES PROOF OF RESIDENCE REQUIRED

PROOF OF RESIDENCE REQUIRED NO NO

≤3 MONTHS HIGH LOW ACCESS ACCESS

76%-90% 51%-75% =50% * “All undocumented immigrants” refers to providing free general healthcare coverage to every undocumented immigrant

and not just to a special population within the group. “Special population” refers to immigrants who are pregnant, minors, human trafficking victims, asylum seekers, and cases of MEDIUM- MEDIUM MEDIUM- HIGH LOW accidents or other serious illness. **≥ 50% refers to the initial ACCESS cutoff point to differentiate between Low Access, and ACCESS ACCESS High/Medium-High/Medium/Medium-Low Access.

Chapter 3: Late HIV Diagnosis among Immigrants in Spain versus Native-Born Spaniards, 2010 – 2015

Introduction Spain has one of the highest prevalence rates of HIV infection in the European Union (EU).

According to the Ministry of Health, Social Services and Equality (MSSSI) of Spain, 120,000 to 150,000 people were living in Spain with HIV in 2010.1 The national surveillance report showed 3366 newly diagnosed cases (7.2 cases per 100,000) in 2014.2

In 22 (71%) countries of 31 members of the EU and the European Free Trade Association

(EFTA), immigrants are an especially vulnerable group to HIV infection.3 In 2014, 32% percent of newly

HIV diagnosed patients were identified as immigrants in Spain.2 Immigrants are disproportionally affected by HIV compared with native-born populations.3-5 In Spain, the disproportionally higher prevalence of HIV in immigrants compared with native-born Spaniards has been documented since the mid-1990s.6 Immigrants from Latin America and the Caribbean (LAC) and sub-Saharan Africa (SSA) have been the most impacted in Spain.2,4,7-9

Many factors contribute to the vulnerability of immigrants to HIV infection, including socioeconomic barriers to healthcare access, legal restrictions that make immigrants ineligible to pursue necessary care, language difficulties, HIV stigma, discrimination by healthcare providers, lack of HIV education, or simply prioritization of attaining basic subsistence over health needs.7,10-15 Among HIV- positive immigrants, those who are undocumented are particularly at risk of not receiving necessary health care.12,16

Delay in access to health care may result in late HIV diagnosis (LHD). Specifically, late diagnosis refers to the advancement of HIV infection (eg, CD4 <350 cells/µL) by the time the individual first tests positive for HIV.17 LHD is an important healthcare marker because of the benefits of early diagnosis. Early diagnosis improves health outcomes of HIV-positive patients, prevents transmission of the virus, and reduces the costs of HIV treatment.18-22 Conversely, delays in diagnosis could impact the effectiveness of antiretroviral therapy (ART)23 and viral suppression needed for decreasing population

transmission rates.24,25 Immigrants have been previously found to be disproportionally represented specifically among cases of LHD in Spain.2,10,26

Immigrants are also considered one of the most vulnerable populations during times of economic crisis.6 This became evident when Spain implemented multiple austerity measures following the 2008 financial crisis.16,27,28 In 2012, the central government of Spain enacted Royal Decree-Law (RDL, legal norm with the rank of law) 16/2012 and Royal Decree (RD, legal norm with the rank of regulation)

1192/2012, which altered universal healthcare practices nationwide and limited the ability of some categories of immigrants to access health care and excluded undocumented immigrants.6,16,27,28 At the same time, some Autonomous Communities (ACs) did not fully apply that exclusion and promulgated regional regulations mainly focused on infections of public health concern.29 The main reason was that the exclusion could have had a deleterious effect also in fully covered populations by contributing to the spread of infectious diseases such as HIV, hepatitis, or tuberculosis, increasing the costs by only treating acute episodes.

Given this context, the aim of this study was to utilize data from a national cohort study on HIV- positive patients to examine the prevalence of LHD among immigrants in Spain (specifically, LAC and

SSA) compared with native-born Spaniards in recent years, and to compare the disparity, if any, between these two groups preceding and following the decrees limiting universal healthcare access in 2012.

Methods

The Cohort of the Spanish AIDs Research Network (CoRIS) is a nationwide multicenter open cohort study of HIV-positive patients launched in 2004. As of today, CoRIS encompasses 42 centers in

13 of 17 ACs (see Appendix C.I). CoRIS collects a broad array of patient data, including sociodemographic, epidemiologic, biologic, and treatment-related variables. Participants are recruited in the network if the following criteria are met: 1) first time in a recruiting clinic; 2) older than 13 years of age; 3) first time confirmed HIV-positive diagnosis; and 4) naïve to ART. Participant sociodemographic information (including education level, sex, place of birth, date of birth, education level) and

epidemiologic information (including most probable transmission mode, date of first HIV-positive result, treatment history) are collected through a structured questionnaire. Biologic information is collected through a blood test (at the start of the study and during scheduled follow-ups). The information is subject to internal quality controls: once every 2 years, information on 10% of the cohort is audited by an externally contracted agency. Participants signed an informed consent (available in Spanish, English, and

French) that clearly states that collected information is anonymous (developed according to the Spanish

Law of Data Protection), and they can decide to stop being part of the study at any time. This study was approved by the Institutional Review Boards of the participating hospitals and centers. A full description of CoRIS has been previously published elsewhere.30

Study sample

For the purpose of this study, cross-sectional panels of patients from January 1, 2010 to

December 31, 2015 were included. Patients were excluded if they were under 18 years of age, were from any immigrant groups other than LAC and SSA, or had a missing CD4 count within 1 year after HIV diagnosis. LAC and SSA were selected as they have been previously identified as the immigrant subgroups most impacted by HIV in Spain,2,4,7-9 and comprised 75% of immigrants registered in CoRIS. A total of 473 immigrants from other countries of origin were excluded from the study to be able to see the impact of 2012 RDL and RD solely on LAC and SSA. There is no information available on the legal status of participating immigrants (residence permit holders or undocumented immigrants) in Spain.

Measures

LHD, the primary outcome, was defined as having acquired AIDS or a CD4 cell count under 350 cells/µL on the first measurement within 1 year after HIV diagnosis, thus indicating progression of HIV infection without early detection.31-34 The main exposure variable was population group (immigrants vs native-born Spaniards). Immigrants were defined as “the persons residing outside their country of birth.”35,36 Additional demographic covariates included sex (male or female), age (19-25, 26-45, 46-65,

>65 years), educational level (middle school and below [unknown included] vs high school and above) as a proxy of socioeconomic status, and likely mode of HIV transmission (injection drug use, heterosexual sex, homosexual/bisexual sex, and other/unknown).

Analysis Descriptive analysis of demographic information and prevalence of LHD was conducted in the total sample as well as by population group. Subsequently, regression analysis was performed to model

LHD prevalence on population group adjusting for demographic and behavioral covariates. The model estimated the LHD prevalence ratio (PR) among immigrants versus native-born Spaniards. A Poisson distribution with robust variance estimation was used for model convergence.37,38 To assess whether the

LHD prevalence ratio of immigrants compared with native-born Spaniards differed before and after the

2012 RD and RDL, an interaction term between population group and calendar period (2010-2011 vs

2012-2015) was included in the final model. The regression model was further stratified by population group and calendar period. All statistical analyses were performed using STATA version 16.0 (College

Station, TX), with alpha set to 0.05.

Results

Sample characteristics

A total of 5943 participants registered in CoRIS met the inclusion criteria, of whom 1488 were immigrants (n=1240 from LAC and n=248 from SSA) and 4455 were native-born Spaniards (see Table

1). Participants in both population groups were predominantly men, between 26 and 45 years of age at

HIV diagnosis, and homosexual/bisexual. However, there were more women in the immigrant group than in the native-born group (19.4% vs 9.1%; P <.001). There were also marked differences in the mode of

HIV transmission between the two groups (P <.001). For example, the proportion of HIV transmission via injection drug use was higher among native-born Spaniards than among immigrants (5.5% vs 0.3%), whereas the proportion of HIV transmission through heterosexual contact was higher among immigrants

than native-born Spaniards (33.1% vs 19.3%; P <.001). Overall, immigrants were more likely to experience LHD compared with native-born Spaniards (45.7% vs 37.4%; P <.001). Figure 1 shows the secular trends of LHD prevalence in immigrants versus native-born Spaniards. The prevalence of LHD among immigrants from 2010 to 2015 ranged between 41% and 49%, compared with 33% to 39% among native-born Spaniards.

Multivariate analyses

Table 2 shows the adjusted PR (APR) model in the full sample and by population group across all

7 years. Between 2010 and 2015, the APR of LHD among immigrants versus native-born Spaniards was

1.15 (95% CI, 1.02-1.28), adjusting for covariates. Correlates of LHD were consistent between immigrants and native-born Spaniards. Across all years in the full sample, older individuals (APRs =

1.27-2.33; P <.001) and individuals whose transmission was not a result of men having sex with men

(APRs = 1.33-1.54, P <.001) were more likely to experience LHD than the respective referent groups.

When analyzed by calendar period (see Table 3), we can see that the APRs of immigrants compared with native-born Spaniards changed from 1.14 (95% CI, 1.02-1.29) from 2010 to 2011 to 1.28 (95% CI, 1.17-

1.39) from 2012 to 2015, although this increase was not statistically significant based on the interaction term in the analysis of the full sample (see Table 2).

Discussion

In light of the 2012 RDL and RD limiting immigrant access to health care in Spain, to the authors’ knowledge, this is the first study to examine the prevalence of LHD among immigrants nationwide before and after their promulgation. We found that immigrants, compared with native-born

Spaniards, had a persistently higher prevalence of LHD across years. Although the disparity between the

2 groups increased after 2012, this change was not statistically significant. The Spanish government increased free healthcare services to HIV-positive undocumented immigrants starting in 201339,40;

however, barriers to healthcare access still persist.41 Availability of evidence-based research is crucial to inform policies that appropriately allocate resources for at-risk populations.42

Contrary to an earlier study based on CoRIS data from 2004 to 2006, showing that immigrants had the same odds of LHD as native-born Spaniards,43 we found a disproportional presence of LHD among immigrants compared with native-born Spaniards in recent years. This may be explained, in part, by previous research showing multiple economic and social factors that increase the vulnerability of the immigrant population in a host country over time,7,10-15 which may have worsened in recent years. The current study encompasses periods following the 2008 economic crisis and the subsequent enactment of restrictive laws and regulations in Spain. Economic crises and legal restrictions imposed on immigrant populations are important barriers to healthcare access.6,7,12-14 Delaying access to health services may be particularly serious among undocumented HIV-positive immigrants,12,16 which could be due to the prioritization of primary needs (eg, food and housing) over health care.15 This warrants further research, as we did not have the ability to analyze the data by the legal status of immigrants.

Measures of austerity implemented following the 2008 financial crisis in Spain, specifically the

2012 RDL and RD, significantly limited universal healthcare access among undocumented immigrants.

As such, we had hypothesized a wider disparity in LHD between immigrants and native-born Spaniards before and after 2012. Although we found a nominal increase in the APR comparing the 2 groups from before 2012 with after 2012, this change was not statistically significant. This may be attributable to the decentralized Spanish health system, in which national restrictions imposed by the 2012 RDL and RD were not necessarily implemented equally across the regions in Spain, because not all ACs supported the change.6,15,44,45 Uniform implementation of the new national regulations could have led to worse levels of early HIV detection among immigrants. In addition, it is noteworthy that the 2012 RDL and RD impacted undocumented immigrants the most, and the dataset does not allow identification of documented versus undocumented immigrants. Thus, the lack of a statistically significant increase can possibly be explained by a large portion of CoRIS participants being documented immigrants. Despite this lack of statistical significance, the persistently higher prevalence of LHD among immigrants highlights severe vulnerability

and the healthcare needs of this population. In addition, due to the infectious nature of HIV, delays in care for at-risk populations could threaten the health of the entire population,16,28 which argues for adoption of population approaches to health policies.

Early HIV detection improves individual treatment success and reduces population transmission rates.18-22 HIV testing can be offered at healthcare facilities, at free-standing sites, and through other community-based programs. The availability of HIV rapid diagnostic tests at healthcare facilities has been previously identified as an important strategy for early HIV detection and immediate linkage of patients to necessary services. Overall, governments are recommended to take into consideration the local context and the cost effectiveness and availability of necessary resources to develop a mixed strategy model tailored to a population and the nature of the epidemic.46 The diffusion of these strategies in a community setting can be important for at-risk immigrants experiencing multiple barriers to traditional clinic-based healthcare access.

It has been previously noted that a limitation of CoRIS is that the data are collected from tertiary hospitals; thus, the study may not be representative of the entire HIV-positive population in Spain.43

Nevertheless, the overall prevalence of LHD is comparable with LHD statistics collected by the national epidemiologic surveillance on HIV/AIDS in Spain during the same timeframe.47-52

This study is an important contribution to the literature on immigrant health in Spain and demonstrates the significant disparity in LHD prevalence among immigrants compared with native-born

Spaniards. More research is warranted to better understand barriers to healthcare services among HIV- positive immigrants and to effectively reach this population to provide care.

References

1. Ministry of Health, Social Services and Equality (MSSSI). Informe annual del Sistema Nacional de Salud 2010. http://www.msssi.gob.es/organizacion/sns/planCalidadSNS/pdf/equidad/Informeanual2010/Infor me_2010_SNS_WEB.pdf 2. Ministerio de Sanidad, Servicios Sociales E Igualdad y Ministerio de Economía y Competitividad. Vigilancia Epidemiológica del VIH y SIDA en España: Sistema de información sobre nuevos diagnósticos de VIH registro nacional de casos de SIDA. 2015. 3. Alvarez-del Arco D, Monge S, Caro-Murillo A, et al. HIV testing policies for migrants and ethnic minorities in EU/EFTA Member States. Eur J Public Health. 2013;24(1):139-144. 4. Migrant health: epidemiology of HIV and AIDS in migrant communities and ethnic minorities in EU/EEA countries. European Centre for Disease Prevention and control. 2010. http://ecdc.europa.eu/en/publications/Publications/0907_TER_Migrant_health_HIV_Epidemiolog y_review.pdf 5. Alvarez-del Arco D, Monge S, Rivero-Montesdeoca Y, et al. Implementing and expanding HIV testing in immigrant populations in Europe: Comparing guideline recommendations and expert opinions. Enferm Infecc Microbiol Clin. 2017;35(1):47-51. 6. Suess A, Ruiz Pérez I, Ruiz Azarola A, March Cerdà JC. The right of access to health care for undocumented migrants: a revision of comparative analysis in the European context. Eur J Public Health. 2014;24(5):712-720. 7. Assessing the burden of key infectious diseases affecting migrant populations in the EU/EEA. 2014. https://www.ecdc.europa.eu/sites/default/files/media/en/publications/Publications/assessing- burden-disease-migrant-populations-summary.pdf 8. Ministerio de Ciencia E Innovacion, Ministerio de Sanidad Y Political Social, y Gobierno de España. Secretaría del Plan Nacional sobre el sida. Situación Epidemiológica del VIH/sida en Inmigrantes. 2009. http://www.msssi.gob.es/ciudadanos/enfLesiones/enfTransmisibles/sida/vigilancia/SituacionVIHI nmigrantes2009.pdf 9. Ministerio de Sanidad y Servicios Sociales e Igualdad (MSSSI). Vigilancia Epidemiológica del VIH/SIDA en España. Actualización. 2011. 10. Thematic report: migrants. Monitoring implementation of the Dublin Declaration on Partnership to Fight HIV/AIDS in Europe and Central Asia. European Centre for Disease Prevention and Control (ECDC). 2012. https://eurotox.org/wp/wp-content/uploads/ECDC_Thematic-report- Migrants.-Monitoring-implementation-of-the-Dublin-declaration-on-Partnership-to-Fight- HIVAIDS-in-Europe-and-Central-Asia-2013.pdf 11. Camoni L, Raimondo M, Regine V, et al. Referents of HIV Surveillance System. Incidence of newly HIV diagnosed cases among foreign migrants in Italy: 2006-2013. J AIDS Clin Res. 2015. https://www.hilarispublisher.com/abstract/incidence-of-newly-hiv-diagnosed-cases-among- foreign-migrants-in-italy-20062013-30852.html 12. Burns MF, Imrie J, Nazroo JY, et al. Why the(y) wait? Key informant understandings of factors contributing to late presentation and poor utilization of HIV health and social care services by African migrants in Britain. AIDS Care. 2007;19(1):103-108. 13. Alvarez-del Arco D, Monge D, Azcoaga A, et al. HIV testing and counselling for migrants populations in high-income countries: a systematic review. Eur J Public Health. 2012;23(6):1039-1045. 14. Prost A, Elford J, Imrie J, et al. Social, behavioural, and intervention research among people of sub-saharan African origin living with HIV in the UK and Europe: literature review and recommendations for intervention. AIDS Behav. 2008;12:170-194.

15. Garciá Rada A. Spanish doctors protest against law that excludes immigrants from public healthcare. BMJ. 2012;345:e5716. 16. Gallo P. Gené-Badia J. Cuts drive health system reforms in Spain. Health Policy. 2013;113(1- 2):1-7. 17. Kozak M, Zinksi A, Leeper C, et al. Late diagnosis, delayed presentation and late presentation in HIV: proposed definitions, methodological considerations and health implications. Antivir Ther. 2013;18(1):17-23. 18. Saganic L, Carr J, Solorio R, et al. Comparing measures of late HIV diagnosis in Washington State. AIDS Res Treat. 2012;2012:182672. 19. Fisher M. Late diagnosis of HIV infection: major consequences and missed opportunities. Curr Opin Infect Dis. 2008;21(1):1-3. 20. Valdiserri RO. Late HIV diagnosis: bad medicine and worse public health. PLoS Med. 2007;4(6):e200. 21. Bisset LR, Cone RW, Huber W, et al. Highly active antiretroviral therapy during early HIV infection reverses T-cell activation and maturation abnormalities. Swiss HIV Cohort Study. AIDS. 1998;12(16):2115-2123. 22. Mugavero MJ, Castellano C, Edelman D, Hicks C. Late diagnosis of HIV infection: the role of age and sex. Am J Med. 2007;120(4):370-373. 23. Gardner EM, McLees MP, Steiner JF, et al. The spectrum of engagement in HIV care and its relevance to test-and-treat strategies for prevention of HIV infection. Clin Infect Dis. 2011;52(6):793-800. 24. Cohen MS, Chen YQ, McCauley M, et al. Prevention of HIV-1 infection with early antiretroviral therapy. N Engl J Med. 2011;365:493-505. 25. HIV/AIDS Care Continuum. U.S. Department of Health and Human Services. 2013. http://aids.gov/federal-resources/policies/care-continuum/ 26. Ministerio de Ciencia E Innovacion, Ministerio de Sanidad, Political Social E Igualdad, Gobierno de España., et al. Diagnóstico tardío de la infección por VIH: Situación en España. 2011. http://www.caib.es/sacmicrofront/archivopub.do?ctrl=MCRST2185ZI100360&id=100360 27. Legido-Quigley H, Oter L, La Parra D, et al. Will austerity cuts dismantle the Spanish healthcare system? BMJ. 2013;346:f2363. 28. Pérez-Molina JA, Pulido F. Evaluación del impacto del nuevo marco legal sanitario sobre los inmigrantes en situación irregular en España: el caso de la infección por el virus de la inmunodeficiencia humana. Enferm Infecc Microbiol Clin. 2012;30:472-478. 29. Cimas M, Gullon P, Aguilera E, et al. Healthcare coverage for undocumented migrants in Spain: Regional differences after Royal Decree Law 16/2012. Health Policy. 2016;120(4):384-395. 30. Sobrino-Vegas P, Guitierrez F, Verenguer J, et al. The Cohort of the Spanish HIV Research Network (CORIS) and its associated biobank; organizational issues, main findings and losses to follow-up [article in Spanish]. Enferm Infecc Microbiol Clin. 2011;29:645-653. 31. Girardi E, Sabin CA, Monforte AD. Late diagnosis of HIV infection: epidemiological features, consequences and strategies to encourage earlier testing. J Acquir Immun Defic Syndr. 2007;46(1):S3-S8. 32. Biswas D, Toebes B, Jjern A, et al. Access to health care for undcomented migrants from a human rights perspective: a comparative study of Denmark, Sweden, and the Netherlands. Health Hum Rights. 2001;14:49-60. 33. Chauvin P, Parizot I, Simonnot N. Access to health care for undocumented migrants in 11 European Countries. Médicins du Monde (Doctors of the World), European Observatory on Access to Health Care. 2009. https://www.hal.inserm.fr/inserm-00419971/document 34. Sasse A, Florence E, Pharris A, et al. Late presentation to HIV testing is overestimated when based on the consensus definition. HIV Med. 2016;17:231-234. 35. Thematic report: migrants. Monitoring implementation of the Dublin Declaration on Partnership to Fight HIV/AIDS in Europe and Central Asia. European Centre for Disease Prevention and

control. 2012. https://www.ecdc.europa.eu/en/publications-data/thematic-report-migrants- monitoring-implementation-dublin-declaration-partnership 36. How health systems can address health inequities linked to migration and ethnicity. World Health Organization. 2010. http://www.euro.who.int/__data/assets/pdf_file/0005/127526/e94497.pdf 37. Williamson T, Eliasziw M., Hilton Fick G. Log-binomial models: exploring failed convergence. Emerg Themes Epidemiol. 2013:10(1):14. 38. Lumley T, Kronmal R, Ma S. Relative risk regression in medical research: models, contrasts, estimators, and algorithms. UW Biostatistics Working Paper Series. Working paper 293. 2006. http://citeseerx.ist.psu.edu/viewdoc/download?doi=10.1.1.817.6036&rep=rep1&type=pdf 39. Inverardi G. Accessing HIV prevention, testing, treatment care and support in Europe as a migrant with irregular status in Europe: a comparative 16-country legal survey. European HIV Legal Forum. 2016. https://www.aidsactioneurope.org/en/publication/accessing-hiv-prevention- testing-treatment-care-and-support-europe-migrant-irregular-0 40. Ministerio De La Presidencia, Relaciones Con Las Cortes E Igualidad. Real Decreto-ley 7/2018 sobre el acceso universal al Sistema Nacional de Salud. Agencia Estatal Boletín del Estado. 2018. https://www.boe.es/diario_boe/txt.php?id=BOE-A-2018-10752 41. Ndumbi P, Del Romero J, Pulido F, et al. Barriers to health care services for migrants living with HIV in Spain. Eur J Public Health.2018;28(3):451-447. 42. Fakoya I, Álvarez-del Arco D, Woode-Owusu M, et al. A systematic review of post-migration acquisition of HIV among migrants from countries with generalized HIV epidemics living in Europe: implications for effectively managing HIV prevention programs and policy. BMC Public Health. 2015;15:561. 43. Sobrino-Vegas P, Garcia-San Miguel L, Caro-Murillo A, et al. Delayed diagnosis of HIV infection in a multicenter cohort: prevalence, risk factors, response to HAART and impact on mortality. Curr HIV Res. 2009;7:224-230. 44. MacPherson DW, Zencovich M, Gushulak BD. Emerging pediatric HIV epidemic related to migration. Emerg Infect Dis. 2006;12:612-617. 45. Pérez-Molina JA, Pulido F. How is the implementation of the new legal framework for health care affecting HIV-infected immigrants in an irregular situation in Spain? Enferm Infecc Microbiol Clin. 2015;33(7):437-445. 46. Consolidate guidelines on the use of antiretroviral drugs for treating and preventing HIV infection: recoomendations for a Public Health Approach. 2nd Edition. World Health Organization. 2016. https://www.ncbi.nlm.nih.gov/books/NBK374294/pdf/Bookshelf_NBK374294.pdf 47. Secretaría del Plan Nacional sobre el Sida/Centro Nacional de Epidemiología. Área de Vigilancia y Conductas de Riesgo Vigilancia epidemiológica del VIH/Sida en España: Sistema de información sobre nuevos diagnósticos de VIH y registro nacional de casos de Sida. 2012. https://www.mscbs.gob.es/ciudadanos/enfLesiones/enfTransmisibles/sida/vigilancia/InformeVIH sida_Junio2012.pdf 48. Secretaría del Plan Nacional sobre el Sida/Centro Nacional de Epidemiología. Área de Vigilancia y Conductas de Riesgo. Vigilancia epidemiológica del VIH/Sida en España: Sistema de información sobre nuevos diagnósticos de VIH y registro nacional de casos de Sida. 2015. https://www.mscbs.gob.es/ciudadanos/enfLesiones/enfTransmisibles/sida/vigilancia/InformeVIH _SIDA_2015.pdf 49. Secretaría del Plan Nacional sobre el Sida/Centro Nacional de Epidemiología. Área de Vigilancia y Conductas de Riesgo. Vigilancia epidemiológica del VIH/Sida en España: Sistema de información sobre nuevos diagnósticos de VIH y registro nacional de casos de Sida. 2011. https://www.mscbs.gob.es/ciudadanos/enfLesiones/enfTransmisibles/sida/vigilancia/InformeVIH Sida_Junio_2011.pdf 50. Secretaría del Plan Nacional sobre el Sida/Centro Nacional de Epidemiología. Área de Vigilancia y Conductas de Riesgo. Vigilancia epidemiológica del VIH/Sida en España: Sistema de

información sobre nuevos diagnósticos de VIH y registro nacional de casos de Sida. 2013. https://www.mscbs.gob.es/ciudadanos/enfLesiones/enfTransmisibles/sida/vigilancia/InformeVIH Sida_Junio2013.pdf 51. Secretaría del Plan Nacional sobre el Sida/Centro Nacional de Epidemiología. Área de Vigilancia y Conductas de Riesgo. Vigilancia epidemiológica del VIH/Sida en España: Sistema de información sobre nuevos diagnósticos de VIH y registro nacional de casos de Sida. 2014. https://www.mscbs.gob.es/ciudadanos/enfLesiones/enfTransmisibles/sida/vigilancia/InformeVIH Sida_Junio2014.pdf 52. Secretaría del Plan Nacional sobre el Sida/Centro Nacional de Epidemiología. Área de Vigilancia y Conductas de Riesgo. Vigilancia epidemiológica del VIH/Sida en España: Sistema de información sobre nuevos diagnósticos de VIH y registro nacional de casos de Sida. 2016. https://www.mscbs.gob.es/ciudadanos/enfLesiones/enfTransmisibles/sida/vigilancia/InformeVIH _SIDA_2016.pdf

Table 1. Characteristics of the Total Sample from 2010 to 2015 Total Immigrants, Native-born P Sample, % (n=1488) Spaniards, % % (n=4455) (n=5943) Sex <.001 Men 88.3 80.7 90.9 Women 11.6 19.4 9.1 Age at HIV diagnosis, y <.001 18-25 14.2 15.3 13.9 26-45 66.9 72.4 65.1 46-65 17.8 12.2 19.7 65> 1.0 0.1 1.4 Likely mode of transmission <.001 Homosexual/bisexual contact 69.1 63.0 71.1 Heterosexual contact 22.7 33.1 19.3 Injection drug use 4.2 0.3 5.5 Other 3.9 3.7 4.1 Education <.001 Middle school and below 46.6 50.3 45.4 High school and above 53.3 49.7 54.6 Late HIV diagnosis 39.5 45.7 37.4 <.001 Presented percentages may be rounded up.

Figure 1. Prevalence of LHD by Population Group Across Years.

60.00%

48.30% 50.00% 48.68% 45.49% 44.30% 48.35% 41.01%

40.00% 36.49% 38.94% 38.19% 37.95% 36.54% 30.00% 32.71%

20.00%

10.00%

0.00% 2010 2011 2012 2013 2014 2015 Immigrants Native-Born Spaniards

LHD, late HIV diagnoses.

Table 2. Multivariate Analysis of the Prevalence of LHD in the Full Sample and by Population Group Variables Total Sample Immigrants Native-born Spaniards PR (95% Cl) P PR (95% Cl) P PR (95% Cl) P Target population Native-born Spaniards 1 - - - - Immigrants 1.15 (1.02-1.28) .019 - - - - Time-period 2010-2011 1 1 1 2012-2015 0.96 (0.89-1.04) .372 1.07 (0.96-1.21) .22 0.96(0.89-1.04) .353 Time-period*population-group 1.11 (0.97-1.28) .132 - - - - Sex Women 1 1 1 Men 1.03 (0.94-1.13) .497 1.04 (0.90-1.19) .597 1.04 (0.92-1.16) .542 Age at enrollment, y 18-25 1 1 1 <26-45 1.27 (1.14-1.43) <.001 1.18 (0.99-1.40) .061 1.33 (1.15-1.54) <.001 <46-65 1.67 (1.48-1.89) <.001 1.30 (1.06-1.60) .011 1.84 (1.58-2.15) <.001 >65 2.33 (1.95-2.79) <.001 1.81 (1.49-2.20) <.001 2.50 (2.04-3.05) <.001 Education level Middle school and below 1 1 1 High school and above 0.83 (0.78-0.89) <.001 0.81 (0.72-0.92) .001 0.85 (0.78-0.92) <.001 Likely mode of transmission Homosexual/bisexual contact 1 1 1 Heterosexual contact 1.42 (1.31-1.53) <.001 1.47 (1.28-1.69) <.001 1.39 (1.26-1.53) <.001 Injection drug use 1.33 (1.16-1.53) <.001 1.91 (0.99-3.68) .052 1.30 (1.12-1.50) <.001 Other 1.54 (1.37-1.73) <.001 1.59 (1.27-1.98) <.001 1.52 (1.32-1.75) <.001 A time-period*population-group variable refers to an interaction term between population group and calendar period (2010-2011 vs 2012-2015) that was included in the model. LHD, late HIV diagnoses; PR, prevalence ratio.

Table 3. Multivariate Analysis of the Prevalence of LHD in the Full Sample and Time Period Variables 2010-2011 2012-2015 PR (95% Cl) P PR (95% Cl) P Target population

Native-born Spaniards 1 1 Immigrants 1.14 (1.02-1.29) .025 1.28 (1.17-1.39) <.001 Sex Women 1 1 Men 1.01 (0.88-1.17) .855 1.05 (0.93-1.17) .427 Age at enrollment, y

18-25 1 1 <26-45 1.30 (1.07-1.57) .007 1.25 (1.09-1.44) .001 <46-65 1.62 (1.31-2.00) <.001 1.70 (1.46-1.97) <.001 >65 2.32 (1.75-3.08 <.001 2.34 (1.86-2.94 <.001 Education level Middle school and below 1 1 High school and above 0.80 (0.72-0.90) <.001 0.85 (0.78-0.93) <.001 Likely mode of transmission

Homosexual/bisexual contact 1 1 Heterosexual contact 1.46 (1.27-1.68) <.001 1.39 (1.26-1.54) <.001 Injection drug use 1.47 (1.21-1.78) <.001 1.21 (0.99-1.48) .066 Other 1.78 (1.47-2.16) <.001 1.44 (1.24-1.67) <.001 LHD, late HIV diagnoses; PR, prevalence ratio.

Chapter 4: A Qualitative Study of Systemic Barriers Encountered by HIV-positive Immigrants in Spain

Introduction

More than half of European Union (EU) member states identify immigrant populations as disproportionately affected by HIV.1-4 Since the mid-1990s, Spain has reported a disproportionate number of HIV cases among immigrants as compared with native-born Spaniards.1-6 According to the first nationwide HIV data collection tool (Information System for New Diagnosis of HIV) implemented in

Spain, of 3366 newly diagnosed cases (7.2 cases per 100,000) in 2014, 32% (1077.10 cases) were identified among immigrants.7

Socioeconomic insecurity, legal status of immigrants, and the experience of stigmatization in the host country affect immigrants’ access to prevention programs, testing, and care services.2,8 This further creates inequalities in healthcare access among immigrants relative to the native-born population,9 and increases their vulnerability to HIV infection.4,5,8-13 Health policies14 and economic crises15-17 can also have a significant effect on overall population health. The impact of economic crises on vulnerable groups, such as immigrants, is also disproportionally severe.18

In recent years, Spain has executed multiple austerity measures to cope with the effect of the

2008 economic crisis. In 2012 the government enacted Royal Decree Law (RDL) 16/2012 and Royal

Decree (RD) 1192/2012 that, together with other budget cuts, increased copayments for an already economically distressed population, denied the right to health care among the undocumented immigrant population,18-20 and altered the previously exercised universal healthcare system in Spain.18-21 This created more barriers that immigrants encountered while accessing necessary healthcare services and added to discrimination or stigma commonly experienced due to HIV-positive status in a host country.2

HIV treatment disruption may cause health deterioration among immigrants and increase mortality and transmission of the virus.22 In this context, and in light of the paucity of data on HIV- positive immigrants in Spain, the aim of this qualitative research was to determine the systemic barriers experienced by HIV-positive immigrants while accessing necessary healthcare in Spain.

Methods

Participant recruitment

Twelve participants were recruited by a local nongovernmental organization (NGO) through phone or in-person contact during their routine visits to the office. The local NGO is dedicated to helping

HIV-positive immigrants (eg, providing psychologic support as well as necessary nutritional food) and to guiding them through the process of accessing healthcare services in Valencia, Spain. To ensure participant anonymity, the name of the NGO is not listed. A social worker employed at the local NGO, otherwise not involved in the research, identified HIV-positive immigrants who routinely engaged with the organization and who met the criteria determined by the study. The social worker explained the purpose of the study to prospective participants. Refusal to participate in the study did not impact services provided to them by the NGO. Informed consent (available in English and Spanish) was obtained.

Participants were included in the study if they met the following criteria: 1) adults 18 years or older; 2)

HIV-positive; 3) had been living in Spain for 1 or more years; 4) spoke Spanish or English; and 5) had experience accessing necessary healthcare as HIV-positive adults. All interviewees were given €10 to participate in the research. The study was approved by the City University of New York Institutional

Review Board.

Interview procedure

Semistructured interviews were conducted at the partner NGO site in summer 2019 to facilitate in-depth conversations with study participants around sensitive topics. This method allows for a deeper understanding of participants’ life experiences.23 Interviews were conducted in Spanish by the lead author.

Participants agreed to the recording of the interview to ensure the accuracy and completeness of the data captured.

Semistructured interviews were designed to explore participant experiences in the following 2 areas: 1) life as an HIV-positive person in terms of emotional or physical distress, and perceptions or experiences of discrimination; and 2) barriers to accessing healthcare services in Spain, and how/if they

were able to overcome them. The semistructured interview guide (see Appendix D.I) was designed in accordance with a conceptual framework by Lévesque et al24 that concentrated on different levels of healthcare access, including participants’ ability to identify healthcare needs, seek care, reach necessary services, obtain care, and receive adequate services. The Lévesque et al24 framework has been previously validated among immigrants in various European countries.25 Our interview guide also included questions exploring participant experiences when diagnosed as HIV-positive and the social effect it had on them.

The final question in the guide addressed participants’ knowledge of 2012 RDL and RD and if/how these impacted them.

Thematic analysis

Before performing analysis, all interviews were transcribed and deidentified. Transcription of the interviews was done by a professional service. Both transcription and subsequent analysis were performed in Spanish. Only quotes used in this paper were translated by the lead author from Spanish into English.

Quotes were corrected for grammar and restructured for clarity without altering the meaning of the original speech.

Thematic analysis identified commonalties among the participants. Thematic analysis was chosen for this study as it allowed for the richness of capturing stories,26 as opposed to using a predetermined framework to analyze the data. The interviews were analyzed following Braun and Clarke’s26 guidelines for thematic analysis. Dedoose (version 8.3.16) was used to aid the analysis.

Results

Characteristics of the participants

Data were considered sufficiently saturated after in-depth interviews with the 12 study participants. Table 1 shows the characteristics of the participants. Participants were from 6 different countries (Argentina, Chile, Cuba, Honduras, Peru, and Venezuela) and all spoke Spanish as a native language. Five of the 12 participants were employed and 4 were married or in a relationship. Sex

distribution was approximately equal among women and men; 60% of the participants were between the ages of 31 and 50 years. Five participants were heterosexual, 5 were homosexual, and 2 identified no sexual preference. Half of the participants had lived with HIV from 6 to 25 years; 50% of participants had resided in Spain from 1 to 5 years and the rest for 6 or more years. Regarding immigration status, 60% of the participants arrived in Spain without documentation and 60% of participants were documented at the time of the interview. Half of the participants arrived for the first time in Spain alone. Reasons for immigration varied among the participants; most reasons related to financial or political hardship.

Table 2 shows their brief immigration journeys. Table 3 summarizes participant experiences with being HIV-positive in Spain and in their countries of origin.

Main themes identified

Table 4 presents 4 themes identified during the interviews. All 4 themes address life experiences of the participants and the systemic barriers and/or enablers they encountered while initially trying to access healthcare services in Spain.

A. Theme 1: Experienced distress after being diagnosed HIV-positive

The majority of participants expressed difficulty with accepting becoming HIV-positive, with managing the health effects of having HIV or of its treatment, and with sharing the diagnosis with loved ones. For example, Patient 2 shared the following anecdote:

Patient 2: “At the start I was very depressed. In my case I had a shock and it took me 15 years to talk about it, and I talked about it in AVACOS-H. It was incredible horror, panic, the world came down on me, I had adolescent children, and they were in the waiting room at the hospital. One of them heard the diagnosis and told the other. They found out like this, because if it was for me, I would just have carried this alone.” (AVACOS-H is a Valencian Association dedicated to HIV, AIDS, and hepatitis.)

Similarly, Patient 4 described experiencing distress due to the process of accepting the diagnosis and sharing it with loved ones.

Patient 4: “My experience when I came here was very bad, emotionally. This man, at the NGO, who I think is a psychologist, talked to me a lot and helped me understand many things. He told me that I am not the first or the last who is going through this. I had fear for my family as well because they were asking me

how I was and what happened. Only my 3 daughters know about it. I did not want to know anything about anyone, because I had fear of restarting my life. I had a Spanish boyfriend and he did not know either.”

In the same vein, Patient 5 described experiencing distress due to the process of assuming the diagnosis and sharing it with the family, and also dealing with the treatment side effects.

Patient 5: “(…) They told me that I was HIV-positive and you can imagine what I was thinking, oh my God, my little children, my husband. They told me do not worry, that you can last for 10 years. Imagine it was 2003, I had 7- or 8-year-old kids and another who was 12 or 13 years old. So little, and imagine they tell you this, that you can last 10 years, my head went crazy. In the end I started the treatment, but it gave me an incredible allergy. I could not wear clothes because everything was itching, another [medication] made me vomit, and I could not walk, but I was looking in the mirror and every time I was seeing myself marked by another treatment. Because all treatments were hurting me I stopped taking them and I spent one and a half years without any treatment before I came to Spain. The second treatment that they gave me here was effective (…) My friends did not know because there [referring to her country of origin] you could not say this. Sincerely I did not have any support.”

Similarly, other participants, such as Patient 7, expressed difficulties due to lack of treatment in their countries of origin, and had the following reaction after being diagnosed:

“I will die. I thought that I will die.”

Another participant (Patient 10) expressed that it was necessary to be positive; however, it was hard to initially adjust to the knowledge of being HIV-positive.

Patient10: “If you are positive, it will give you a lot of fear; you are scared to enter this world, because it is not easy. You go to bed thinking that you have the disease and you wake up knowing you have the disease and it is hard. In the beginning it is hard to overcome this thinking, it is hard to overcome, but when you accept it then you know that you will live with this until the end of your days.”

A few participants did not express having strong emotional distress due to being diagnosed with

HIV. They took care of themselves (received treatment, lived a healthy lifestyle); however, they nonetheless avoided sharing information with others.

Patient 1: “When I found out about it, I knew I had to live a bit differently, and did not get upset. So, I was taking care of myself. Especially when I was not taking any medication, so I ate well and slept well. Because I did not have a medication, I was limiting my life a bit. I do not feel like I have HIV. I go on as if nothing happened to me.”

Few participants expressed no or limited emotional distress while dealing with their diagnoses or life as HIV-positive persons, contrary to the majority of immigrants who were interviewed. For example,

Patient 3 shared the following:

Patient 3: “(…) I got it and that is it, it is something that you do not choose (…) you have to accept it. I think I accepted it quite well. However, it was still a process of adaptation (…) I know that I have it, but it is controlled (…) sometimes I do not believe that I have it. I know that it is there and I take care of myself, I take my medication (…)”

Another participant (Patient 6) explained that, although it was hard to adapt to the idea of being

HIV-positive, the support of her partner made it manageable for her.

Patient 6: “For me it was hard, it is a hard situation. Knowing that you are limited in many things (…) but I was lucky to have a partner, we were together, we were in the same situation (…) I cannot imagine people who are alone, people who do not have support of a partner or family members or of a friend or similar, because friends discriminate too.”

B. Theme 2: Perceived or experienced discrimination due to being HIV-positive in Spain

The majority of participants experienced discrimination or expressed fear of possible discrimination due to their HIV status. For example, Patient 12 said the following:

Patient 12: “We went to a pool in a village and the owner told his subordinates not to let us in the pool because we will contaminate everyone with AIDS. In the hospital as well. I was in the observation room and I asked someone for water. He was slow to bring it and I heard them talking. I heard one worker telling another that he should be careful with me because I have HIV. I got angry and I told them, “I will not contaminate your fellow worker if he brings me a glass of water.”

Patient 11 also noted how she was treated differently due to prejudice or lack of knowledge about

HIV and how it could be transmitted.

Patient 11: “I lived with my niece who was living with her aunt. This woman knew of my health condition but her children did not. Once I was cooking a stew and I took a spoon to try it and she [referring to the aunt] thought I was planning to put it directly to my mouth. She told me “put it in your hand.” I told her, “I was planning to do that.” I saw where this was going. She was asking, “How are you?” “You have to be careful with these things.” Of course, I was very careful, including after I showered. I leave the bathroom as if no one has entered it.”

Some participants described having fear of discrimination in different situations in their lives in

Spain.

Patient 10: “It is a country with people of different ages, and you cannot compare a person who is 80 or 70 years old with one who is 20 years old. Older people bring a lot of stigma and taboos to many situations. It does not matter how much you say that Spain is free and is diverse and there are a lot of liberties, the society here is still trying to accept things.”

Patient 10 also talked about perceived fear of being denied employment or being fired because of his HIV status.

Patient 10: “One also has fear in an environment of employment when you think “They will do a test for HIV and it will come out positive, and they will fire me, they will not want me, they will reject me.”

Similarly, Patient 2 described her actual experience when trying to get a job.

Patient 2: “Recently, in some jobs they no longer discriminate because of age and HIV status, because in some other jobs they continue to reject you for other reasons, but in reality, because they do analysis and HIV status comes out positive. Because they want to be sure that people will not miss work, contracts are short, they want to get rid of a lot of problems. They think that people who have HIV will be constantly in the hospital.”

On the other hand, Patient 8 described a violation of her right to doctor-patient privacy because she had HIV.

Patient 8: “My partner did not know it [referring to her HIV status], and when I told my doctor, I felt liberated. This doctor made me feel safe, but when I left the room and my partner entered, he told him “How is it going with your partner, so many years as a HIV patient?” When he came out of the room, he gave me a look. I wanted to report him [referring to the doctor] because it should not be like this, because supposedly I am signing a document that says that whatever I tell my doctor is confidential.”

Few participants expressed limited or no experience of discrimination or perceived discrimination due to being HIV-positive, however their responses were nonetheless telling of the broader social conditions around HIV. For example, Patient 1 shared the following:

Patient 1: “Because I never shared and I never talked about it, I never had this experience.”

C. Theme 3: Barriers encountered when initially trying to access free healthcare services in Spain

The majority of participants who had negative or somewhat negative experiences while trying to access free healthcare services mentioned encountering systemic barriers; specifically, not being able to receive a public health insurance card. Patient 3 discussed problems with meeting the requirement of being registered in an Autonomous Community (AC) for the minimum months required in order to apply for a public health insurance card.

Patient 3. “Applying for a public health insurance card was a problem at the start, because I arrived in Spain and here it is fundamentally important to be registered in an AC. I spent 4 months without meeting someone who would register me in the AC. I was paying rent but no one ever registered me there. I got registered in my fourth month in the AC.”

Similarly, Patient 11 described problems with meeting the requirement of being registered in an

AC in order to apply for a public health insurance card.

Patient 11: “Everything had to be done one after another. Analysis, applying for a public health insurance card especially, because I was not previously registered 3 months in the AC as they required. I did not have that yet. They asked me for the proof of registration in the AC and I just gave an address of the place I arrived to.”

Another participant (Patient 6) had difficulty getting an appointment with the social worker at the hospital to apply for the public health insurance card. According to the participant, he thought the social worker could grant a public health insurance card, as advised by a friend.

Patient 6: “The admission and information desks at the hospitals need a reason why you want an appointment with the social worker. They were telling us different reasons why they could not give us an appointment with the social worker. They told us that in order to get such an appointment we already needed to have a public health insurance card. We explained that we did not have the card and that is why we wanted an appointment, but they told us that the social worker was not for that. We went there because our friend received the card this way, but in another institution or health center.”

When the interviewee was asked if the admission or information staff at the hospital explained where they should have gone to apply for the card, Patient 6 answered “No, they never told us.”

Few participants expressed limited to no barriers while trying to access healthcare services in

Spain. For example, Patient 2 shared the following:

Patient 2: “(…) I was talking to the people with the truth, I was telling them, “listen, we are trying to have a normal life in Spain, have all of our documents in order, we do not want anyone to give us gifts”, but it could have been because I am HIV-positive they were immediately giving me an pubic health insurance card with validity of 3 months, 6 months, depending on the regional government (…)”

Patient 6 also expressed experiencing no barrier in receiving a public insurance card necessary to access free healthcare services in Spain.

Patient 6: “Here in Spain, I was given one paper that allows me to live in Spain so I did not have any problems, look here it is (…) for all the hospitals.”

D. Theme 4: Possible reasons of positive experience when initially trying to access free healthcare

services in Spain

This theme expresses the notion of a “guiding source” who possibly influenced participants’ positive experiences when initially trying to navigate the public health system in Spain. The majority of the participants mentioned guidance from a local NGO who showed them pathways to receiving free healthcare services and a public health insurance card. They found an NGO through personal effort or a

friend. Patient 11 described her experience of trying to receive treatment for HIV in Spain through the help of a local NGO, as follows:

Patient 11: “I came here with enough medication for one month. When it was gone, I thought, “What do I do now?” I searched on the Internet and I said, “There should be some organization here dedicated to HIV-positive people that can help me in this situation.” I found AVACOS-H. I called them and they answered and asked me, “Can you come in now?” Of course, I went because I had been without medication for two weeks. When I explained my situation and how I was, Diana helped me a lot. She immediately talked with a doctor for me.”

Similarly, Patient 10 described how everything was organized for him by a local NGO as follows:

Patient 10: “The Red Cross guided me to receive a public health insurance card: right away they helped me talk with a doctor who gave a referral, after which I went to ambulatory care and talked with a social worker to whom I explained my health needs and that I needed treatment. Right away I was given a health insurance card and a doctor gave me the treatment I needed.”

Several participants shared how friends guided them through the process and helped navigate the system. For example, Patient 1 expresses how a friend, who immigrated to Spain before him, explained to him where to go and what to do.

Patient 1: “I came here with help from my friend from Cuba. He came here two months before I did. Thus, he already navigated all these formalities and he explained to me what I had to do. I went to the medical center. But I was not registered in the AC. I explained that I was HIV-positive and that I had to take a medication. I talked with a social worker and she processed everything for me.”

In the same vein, P12 noted the following:

Patient 12: “A man that I was married to was coming to Valencia (…) When he arrived, he told me “do not pay anything.” I received a bill at the hotel where I was staying. He told me, “Do not pay anything and this will be resolved.” I went back with him [to the hospital] and that is when I started doing all the paperwork and public health insurance card...”

Similarly, Patient 9 talked about how a friend helped her complete the requirements to receive a public health insurance card and guidance received from a local NGO to pursue other possible help.

Patient 9: “Yes, the woman in the apartment where I was living helped me get proof of registration at this address. AVACOS-H also helped to see if I could receive financial assistance.”

All participants shared having some level of guidance from a third party (such as an NGO, hospital staff, or a friend) that helped them navigate the Spanish healthcare system.

Possible influence of other variables on the positive experience

The study also looked at the possible connection of the documentation status of the participants and/or of the type of guidance received, on positive or negative experience when applying for a public health insurance card. All participants who arrived in Spain with legal documents (5 of 12) or as an asylum seeker (2 of 12) had a positive experience when applying for a public health insurance card. Four out of these 7 participants received guidance from an NGO through the process, 2 were assisted by friends, and 1 was aided by a hospital staff member.

Of the 5 participants who arrived in Spain undocumented, 3 had negative or somewhat negative experiences while applying for their public health insurance cards. Two undocumented participants had a positive experience. Of these 2 latter participants, 1 was guided through the process by an NGO and another was guided by a friend who initially was also assisted by an NGO. Of the 3 participants who had negative or somewhat negative experiences, 2 had minimal guidance from a friend and resolved the obstacles by themselves. The third undocumented immigrant had to access emergency care due to an accident for which she was billed. After receiving the bill, she was advised by a family member not to pay the bill. This participant already had legal immigrant status in Spain when she needed healthcare services for the first time.

Discussion

The number of immigrants in Spain has increased greatly over the past decade. In 1998, immigrants were only 1.6% of the total population; by 2019, the percentage had increased to 10.7%.27 It is commonly observed that immigrants arrive healthy in the country (healthy immigrant effect)28,29; however, with the passage of time, their health worsens due to various socioeconomic factors and to the risk of being excluded from free public health services.30,31 Few studies have examined the process of access to healthcare services among HIV-positive immigrants in Spain.32 To our knowledge, this is one of the first studies to examine the experiences of this vulnerable population in Spain, especially after the passage of 2012 RDL and RD. This study adds new knowledge to the public health literature,

highlighting the personal and systemic struggles faced by HIV-positive immigrants in Spain, in both health care and other arenas.

We found that all participants who encountered barriers while applying for a public health insurance card mentioned not having proof of registration in an AC (with or without the required minimum time period of residence) as an obstacle (Theme 3). Participants who had a somewhat positive experience of applying for a public health insurance card were guided by a social worker, a friend, or family member or an NGO/association (Theme 4). Participants who had somewhat negative experiences while applying for a public health insurance card reported less guidance from another person or organization. Sixty percent (7 of 12) of the participants did not appear to have knowledge of the 2012 health reform in Spain and thus did not express its effect on their lives. Only 1 participant was fully aware of the health reform.

Results are consistent with other studies that identified difficulties individuals had meeting legal requirements to use free healthcare services, including acquiring a public health insurance card, which were barriers to access to care in Spain. Being an undocumented immigrant has also been identified as a risk factor for facing more barriers while accessing healthcare services.33,34 The 2012 RDL and RD abolished previously practiced universal healthcare access in Spain,35 and the requirement of being registered in an AC was a barrier stemming from the new law. Therefore, regardless of whether participants were aware of the 2012 RDL and RD, the commonly cited systemic barrier to accessing a public health insurance card was the direct effect of 2012 RDL and RD.

This study highlights the importance of the existence of NGOs and social networks in facilitating

HIV-positive immigrants’ access to free healthcare services. Even when individuals are not directly engaged with an NGO, it can still be the source of informational or instrumental support for family and friends who try to help. NGOs appear to be an important safety net system in Spain and appear to buffer against restrictions that Spanish laws imposed on healthcare access among undocumented immigrants.

We have found previously that regional implementation of the national laws varied greatly, with some

ACs eventually granting access to undocumented immigrants who were HIV-positive, but navigating

these provisions was often difficult for individuals (Unpublished data). Previous studies have also shown that third-party guidance is a positive facilitator for entry into the healthcare system in Spain.34,36 Various

NGOs and medical communities in Spain have been actively involved in advocating for the rights of immigrants to health care, especially after the implementation of 2012 RDL and RD.35 Some of these organizations have also been providing administrative support or healthcare assistance to immigrants who were initially denied care.36 Furthermore, having a robust civil society may be crucial for mobilizing advocacy and policy action in the face of political ideology that is not public health-friendly in many

ACs; political ideology can often influence how each AC implements national laws on healthcare access.37

Experiences (or fear) of discrimination, stigma, and intolerance have been previously reported by

HIV-positive immigrants in Spain and other European countries,25,34 as has the burden and struggle of their health status.25 This highlights the importance of disseminating information on available support services (hospitals, health centers, pharmacies, other community organizations) and providing proper education and adequate support to all HIV-positive immigrants, especially because many immigrants come from countries with stigma and intolerance regarding HIV. The need for comprehensive systems intervention to address the multifaceted challenges faced by HIV-positive immigrants in Spain is further reinforced by findings from this study.

We recognize some limitations of our study. First, our sampling from a single site may limit the generalizability of the results. However, findings are consistent with the results and recommendations of previous studies on the topic of interest.25,33-36 Second, this study has a small sample size, which may limit variations in the explored topic.38 However, data reached saturation with 12 participants in our study, suggesting that the sample was sufficient for the issues investigated and in the particular study setting. A smaller number of participants also allowed in-depth case-oriented analysis of each interview which is a strength in qualitative research.38 Another limitation is the possible impact of the face-to-face interview process on underreporting of participants’ experiences as HIV-positive persons living in Spain. However, the interviewer came from a social work background and created a safe and motivating environment for

the interviewees in which to freely tell their stories. Finally, although questions for the interviews were designed specifically for this study, it is possible that a different set of questions could have given different results. However, the interviews were semistructured, which allowed interviewees to deviate from the questions. This allowed exploration of participants’ lives as HIV-positive immigrants in Spain that was not initially included in the semistructured interview guide.

This study is a contribution to the limited literature describing the personal journeys of HIV- positive immigrants and their experiences accessing healthcare services in Spain, especially after the passage of 2012 RDL and RD. Immigrants represent a growing population in Spain, and all of Europe, and greater public health attention to the needs of such vulnerable populations is urgently needed. The results of this study demonstrate the important role of NGOs in helping HIV-positive immigrants navigate the system. Future follow-up research is needed to design and implement effective models of improving the care and health of HIV-positive immigrants in Spain and throughout Europe.

References

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17. Karanikolos M, Mladovsk P, Cylus J, et al. Financial crisis, austerity, and health in Europe. Lancet. 2013;381(9874):1323-1331. 18. Suess A, Ruiz Pérez I, Ruiz Azarola A, March Cerdà JC. The right of access to health care for undocumented migrants: a revision of comparative analysis in the European context. Eur J Public Health. 2014;24(5):712-720. 19. Gallo P. Gené-Badia J. Cuts drive health system reforms in Spain. Health Policy. 2013;113:1-7. 20. Legido-Quigley H, Oter L, La Parra D, et al. Will austerity cuts dismantle the Spanish healthcare system? BMJ. 2013;346:f2363. 21. Pérez-Molina JA, Pulido OF. Evaluación del impacto del nuevo marco legal sanitario sobre los inmigrantes en situación irregular en España: el caso de la infección por el virus de la inmunodeficiencia humana. Enferm Infecc Microbiol Clin. 2012;30:472-478. 22. Montaner JSG. Adverse consequences for the human immunodeficiency virus epidemic in Spain following the new legal health framework on the illegal immigrants — save today and pay more tomorrow. Enferm Infecc Microbiol Clin. 2012;30(8):431-432. 23. Patton, MQ. Qualitative research. In: Everitt BS, Howell D, eds. Encyclopedia of Statistics in Behavioral Science. Hoboken, NJ Wiley:2005. 24. Levesque JF, Harris MF, Russel G. Patient-centered access to health care: conceptualizing access at the interface of health systems and populations. Int J Equity Health. 2003;12:18. 25. European HIV Early Diagnosis and Access to Treatment Project (Euro HIV-EDAT) Project. Access to HIV testing and linkage to care for migrants populations in Europe 2014-2017. National Report on HIV and migrants in Europe. https://eurohivedat.eu/arxius/ehe_docsmenu_docsmenu_doc_115- National_Reports_Synthesis_WP8_Euro_HIV_EDAT_Finale_version.pdf 26. Braun V, Clarke V. Using thematic analysis in psychology. Qual Res Psychol. 2006;3(2):77-101. 27. Estadistica del Padron Continuo. Provisional data. National Institute of Statistics 2019. https://www.ine.es/prensa/pad_2019_p.pdf 28. Uretsky MC, Mathiesen SG. The effects of years lived in the United States on the general health status of California’s foreign-born populations. J Immigr Minor Health. 2007;9:125-136. 29. Ribera B, Casal B, Cantarero D, et al. Adaptacion de los servicios de la salud a las caracteristicas específicas y de utilización de los nuevos españoles. Gaceta Sanitaria. 2008;22:86-95. 30. Ahonen EQ, Benavides FG, Benach J. Immigrant populations, work and health – a systematic literature review. Scand J Work Environ Health. 2007;33:96-104. 31. Gushulak B, Pace P, Weekers J. Migration and health of migrants. EN: WHO Regional Office for Europe, editor. Pvoerty and Social Exclusion in the WHO European Region: Health systems respond. Copenhagen, Denmark: WHO Regional Office for Europe. 2010:257-281. 32. Llop-Girones A, Vargas Lorenzo I, Garcia-Subirats I, et al. Immigrants’ access to health care in Spain: a review. Revista Española de Salud Pública. 2014;88(6):715-734. 33. Pérez-Urdiales I, Goicolea I, San Sebastián M, et al. Sub-Saharan African immigrants women’s experiences of (lack of) access to appropriate healthcare in the public health system in the Basque Country, Spain. Int J Equity Health. 2019;18(1):59. 34. Ndumbi P, Del Romero J, Pulido F et al. Barriers to health care services for migrants living with HIV in Spain. Eur J Public Health. 2018;28(3):451-457. 35. Peralta-Gallego L, Gené-Badia J, Gallo P. Effects of undocumented immigrants’ exclusion from health care coverage in Spain. Health Policy. 2018;122:1155-1160. 36. Urtaran-Laresgoiti M, Fonseca Peso J, Nuño-Solinís R. Solidarity against healthcare access restrictions on undocumented immigrants in Spain: the REDER case study. Int J Equity Health. 2019; 8:82. 37. Cimas M, Gullon P, Aguilera E, et al. Healthcare coverage for undocumented immigrants in Spain: regional differences after Royal Decree Law 16/2012. Health Policy. 2016;120(4):384- 395.

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Table 1. Characteristics of the Participants Sex Women 6 Men 5 Transgender women 1 Age, y 18-30 2 31-50 7 51-65 3 Sexual orientation Heterosexual 5 Homosexual 5 Unknown/other 2 Region of origin Argentina 2 Chile 1 Cuba 3 Honduras 1 Peru 1 Venezuela 4 Employment status Employed 5 Unemployed 2 Part-time employment 1 Illegal manual work 3 Retired 1 Family status Single 8 Married 2 In a relationship 2 Number of years diagnosed with HIV <5 4 6-15 1 16-25 5 26> 2 Probable transmission mode Heterosexual contact 5 Homosexual contact 5 Unknown 2 Initially tested in Spain Yes 1 No 11

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Table 2. Immigration Details of the Participants Time living in Spain, y 1-5 6 6-11 1 12-16 2 17> 2 Unclear 1 Documentation status when arrived Documented 5 Undocumented 5 Asylum seeker 2 Documentation status now Documented 7 Undocumented 3 Asylum seeker 2 Immigrated to Spain alone Yes 6 No 6 Living with partner/family member Yes 6 No 5 Unknown 1 Reason(s) of immigration Financial situation of country of origin 3 Political situation of country of origin 3 Health reasons 1 Political situation and health reasons 1 Other (Spanish partner, threat to life in the country of origin, financially supporting child already living in Spain, seeking treatment for a family member) 4

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Table 3. Participants’ Experiences Being HIV-Positive Family/friend support on the matter of HIV Full support (family and friends) 2 Family support 1 Friend support 2 Some support (some family and/or some friends) 6 No support 1 Experience/perception of country of origin context for HIV Lack of medication 5 Discrimination (including fear of discrimination) 2 Stigma and prejudice (including lack of information) 4 No experience in country of origin 1 Received initial guidance on how to access necessary healthcare services in Spain NGO guidance (including associations) 6 Hospital staff (social worker) 1 Friend guidance (friend, family member) 5 Experience of applying for insurance card in Spain Positive 9 Negative 3 Perceived reasons for negative experience while trying to access healthcare services or after receiving care Hospital staff (not entitled to health insurance card) 1 Not entitled by the law (3-month registration requirement not met) 2 Not explained the system in advance (received a bill) 1 N/A (participants who did not identify negative experience) 8 Perceived experience while trying to access other health services/follow-ups Positive 9 Negative 1 Unknown or not applicable 2 Emotional experience of living with HIV Distress 4 Distress in the initial stages 5 No negative thoughts expressed 3 Experience of discrimination in country of origin Fear of discrimination 5 Experienced discrimination 2 No experience of discrimination 1 Other (unknown or not applicable) 4 Experience of discrimination in Spain Fear of discrimination 2 Experienced discrimination 2 No experience of discrimination 3 Other (felt differential treatment, unknown, unclear) 5 Knowledge/experience of 2012 RDL and RD Aware and did not change anything 1 Somewhat aware and did not change anything 3 Not aware and was not in the country 4 Not aware and was in the country 1 Not aware and unclear if he/she was in the country 3 NGO, nongovernmental organization; RD, Royal Decree; RDL, Royal Decree Law.

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Table 4. Themes Identified through the Interviews

Theme Brief Description

Experienced distress after being diagnosed HIV- Participants experienced emotional or physical positive distress and/or struggled to adapt to living as an HIV-positive person during initial period of diagnosis, throughout life, or described no negative time in their lives as it pertains to the adjustment to being HIV-positive. Perceived and experienced discrimination due to Participants had perceived fear of discrimination, being HIV-positive while in Spain experienced discrimination, experienced differential treatment, ignorance about HIV, as well as described not having any discriminative incidents as an HIV-positive person. Barriers encountered when initially trying to Participants experienced systematic barriers (not access free healthcare services in Spain being eligible to receive public health insurance card) and administrative barriers (front office staff at the hospitals) while trying to access free healthcare services in Spain. Possible reasons of positive experience when Participants identified sources who gave them initially trying to access free healthcare services in initial guidance on the process of receiving free Spain healthcare services and were perceived by the interviewer as a possible reason of overall positive

experience. Specifically, guidance from an NGO, from a friend, hospital staff, or personal effort.

NGO, nongovernmental organization.

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Chapter 5: Conclusions

Overview

All three aims of this mixed-methods dissertation were developed to study policy implementation and the impact of 2012 health reform (2012 Royal Decree Law [RDL] and Royal Decree [RD]) that abolished previously practiced universal healthcare coverage in Spain, denying access to free care to undocumented immigrants and to persons over age 26 who had never been employed previously.1

Findings from this dissertation, presented in Chapters 2 through 4, provided qualitative and quantitative evidence that HIV-positive immigrants encountered systematic barriers while trying to access free healthcare services in Spain, especially after the promulgation of 2012 RDL and RD. The qualitative portion elucidated the systematic barriers by providing narratives from HIV-positive immigrants living in

Spain, further supported by legal limitations demonstrated in policy implementation analysis of 2012

RDL and RD and consecutive regional policies in the 7 Autonomous Communities (ACs) of Spain. In addition, the epidemiologic analysis portion of the dissertation showed an increase in the percentage and disproportional presence of late HIV diagnoses (LHD) among immigrants compared with native-born

Spaniards, after implementation of 2012 RDL and RD.

The main findings of this dissertation can be separated into 3 parts: 1) Access to free healthcare services granted to undocumented immigrants in 7 ACs were uneven and the primary constraining factor was the minimum time of residence requirement in the respective AC (discussed in chapter 2); 2) LHD was disproportionally present among HIV-positive immigrants compared with native-born Spaniards from 2010 to 2015 (discussed in chapter 3); and 3). HIV-positive immigrants encountered systematic barriers while accessing free healthcare services in Spain, predominantly due to their inability to comply with the minimum time of residence requirement in the respective ACs (discussed in chapter 4).

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Uneven access granted to undocumented immigrants in the 7 ACs

We found that, among the 7 ACs studied, Andalucía provided the highest access to free healthcare services (general and HIV care) to all undocumented immigrants during the entire period of the study timeframe, without any requirement for identification or proof of residency. Basque Country is considered to have medium-high access, with full coverage for all undocumented immigrants for 76% to

90% of the study timeframe. Aragón, Madrid, and Valencia provided medium access, with full coverage to all undocumented immigrants for 51% to 75% of the study timeframe. Barriers to care (free general and HIV care) in these ACs were less severe, with a requirement for identification and less than 3 months of residency in the AC during the majority of the study timeframe. Madrid provided high access to HIV care to all undocumented immigrants granted according to the first regional instruction issued after 2012

RDL and RD. Castilla-La Mancha provided medium-low access to undocumented immigrants, with full coverage provided to all undocumented immigrants for 50% of the study timeframe. Finally, Galicia provided the lowest access, as access to free general healthcare services was provided only to a limited set of undocumented immigrants (eg, pregnant women, minors, asylum seekers, and human trafficking victims) during the entire study timeframe (not including the time between enactment of 2012 RDL and the first regional instruction). At the same time, Galicia provided medium-high access to all HIV-positive undocumented immigrants due to separate instructions issued by the regional government regarding free care for persons with infectious diseases.

Aragón and Galicia created governmental instructions specifically for providing free healthcare services to patients with diseases under epidemiologic surveillance (including HIV care). Castilla-La

Mancha, Basque Country, and Madrid either mentioned access to free services for undocumented immigrants with contagious diseases or provided alternative pathways to care. Although infectious diseases were not specifically mentioned in the governmental instructions, it was assumed that such access was provided in Andalucía and Valencia free of charge when full coverage was granted to undocumented immigrants.

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Disproportional presence of LHD among HIV-positive immigrants compared with native-born Spaniards from 2010 to 2015

We found that the prevalence of LHD in the total sample was 39.5%. Compared with native-born

Spaniards (n=4445), immigrants (n=1488) were more likely to experience LHD (37.4% vs 45.7%, respectively; P <.001). Multivariate analysis showed that the adjusted prevalence ratio (APR) of LHD among immigrants compared with native-born Spaniards was 1.15 (95% CI, 1.02-1.28), after controlling for covariates. This disparity widened from 2010-2011 (APR=1.14; 95% CI, 1.02-1.29) to 2012-2015

(APR=1.28; CI, 1.17-1.39), although the increase was not statistically significant. We conclude that despite this lack of statistical significance, persistently higher prevalence of LHD among immigrants highlights a critical vulnerability in the healthcare needs of this population.

Systematic barriers encountered by HIV-positive immigrants while accessing free healthcare services in

Spain

We found that all participants who described encountering a barrier while applying for a public health insurance card mentioned not having proof of registration in an AC (with or without the required minimum time period of residence). Participants who had somewhat positive experiences applying for a public health insurance card were guided throughout the process by a social worker, a friend/family member, or by a nongovernmental organization (NGO)/association. Participants who had somewhat negative experiences in applying for a public health insurance card described receiving little-to-no guidance from a third person or an organization. Of the undocumented immigrants participating in this study who had somewhat positive experiences (2 of 5), each had a third party guide them through the process. Few participants had knowledge of the 2012 health reform in Spain, and neither expressed its effect on their lives; however, it is probable that having documentation (legal immigration status) or guidance to navigate the system from a third party served as a protective factor in overcoming the barriers set by 2012 RDL and RD, specifically related to having proof of residency in an AC.

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Limitations

There were some limitations that were inherent in all 3 research studies. The first limitation related to the sample sizes of the studies. Specifically, we included only 7 of 17 ACs in the policy implementation analysis study (Chapter 2), 13 of 17 ACs were part of the epidemiologic study (Chapter

3), and 12 participants were interviewed for the qualitative study (Chapter 4); thus, the results may not be generalizable across Spain. However, the policy implementation analysis study (Chapter 2) consisted of three (Andalucía, Madrid, and Valencia) of the 4 largest ACs by population size.2 In addition, 6 of the 7

ACs (Madrid, Andalucía, Valencia, Aragón, Basque Country, Galicia) were among the 10 ACs of Spain with the largest immigrant populations.2 According to recent statistics, approximately 52% (173,909) of the newly arrived immigrants in Spain (333,777) settled in the 7 ACs selected for this study.2 The qualitative study (Chapter 4) has a small sample size, which may limit variations in the explored topic; however, data achieved saturation at 12 participants for the purpose of the research. The epidemiologic study (Chapter 3) was conducted using the largest secondary database available in Spain; the overall prevalence of LHD was comparable with LHD statistics collected by the national epidemiologic surveillance on HIV/AIDS in Spain during the same timeframe.3-8

Second, the single route chosen to recruit participants may also be a limitation. Specifically, participants for the qualitative study (Chapter 4) were recruited with help of 1 NGO in 1 AC, policy interviews (Chapter 2) were done only with 9 representatives from the respective ACs selected by two of the researchers of the study, and epidemiologic data (Chapter 3) were collected only from tertiary hospitals; thus, the results may be affected by selection bias. However, the participants interviewed for the qualitative study (Chapter 4) were from 6 different countries and arrived in Spain during various time periods, as well as in different ACs; therefore, their experiences with accessing healthcare services are diverse. Participants selected for the policy implementation study (Chapter 2) represented NGOs as well as governmental organizations, thus providing input from diverse points of view and backgrounds. In addition, the researcher responsible for the recruitment of the interviewees from the governmental organizations for the policy implementation study (Chapter 2) is a leading professional in the HIV field in

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Spain, and currently is responsible for National HIV/AIDs Plan development. In the epidemiologic study

(Chapter 3), even though data were collected from only tertiary hospitals, the overall prevalence of LHD was comparable with the data collected by the national epidemiologic surveillance on HIV/AIDS.3-8

Third, in the qualitative study (Chapter 4) and interview portion of the policy implementation study (Chapter 2), participants may have under-reported their opinions and aspects of their experiences.

However, the interviewer came from a social work background and created a safe and motivating environment for the interviewees to tell their stories freely and share their opinions about the policy implementation process and impact of 2012 RDL and RD.

Policy Implications

Spain has a long and rich history of immigration. Spain has been considered as pathway to

Europe, especially for immigrants coming from the north of Africa and the Middle East, due to their close proximity.9 In 2011, 457,649 documented and undocumented immigrants arrived in Spain.10 Since the economic crisis of 2008, the total number of immigrants coming to Spain has decreased; however, a large number of undocumented immigrants still arrive in Spain. The total number of undocumented immigrants who entered Spain only by boat decreased from 13,424 in 2008 to 5441 in 2010, and to 3804 in 2012, and then increased to 7485 in 2014.11,12

Due to the overall increase in the number of undocumented immigrants, it is necessary to study the capacity of many developed countries to provide health care to vulnerable groups, including Spain.9

Several factors make undocumented immigrants particularly vulnerable to health risks. 1) Health issues developed due to lack of access to healthcare services and vaccinations in their countries of origin; and 2) conditions of the journey to the host country impacting the psychologic and physical health of undocumented immigrants.9 Furthermore, in the host country, undocumented immigrants have been denied access to health care due to lack of legal awareness in their communities, provider ignorance of laws regarding their protection, and unwillingness to treat among medical professionals due to deep- seated discrimination and racism.13,14 In recognition of the continued influx of undocumented immigrants

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to Spain,9,11,12 the lack of empiric literature on access to health care for immigrants living in Spain,15 and the recent enactment of restrictive laws and regulations in Spain,1 it is even more important to enrich research in the field to inform policy makers. The policy challenge of attending to the health needs of vulnerable populations such as immigrants is particularly relevant as a result of the 2019 coronavirus crisis and the associated economic fallout, which may put further strain on the welfare state including healthcare.

The findings from this dissertation may have such policy implications. First, all 3 research aims studied the possible impact of restrictions imposed by 2012 RDL and RD on immigrants, which is crucial to inform policy makers who can appropriately allocate resources for at-risk populations in the future.

Specifically, the policy implementation study (Chapter 2) showed that undocumented immigrants were granted substantially limited access to free healthcare services after implementation of 2012 RDL and

RD, thus posing risk to their health as well as the health of the overall population in Spain, particularly with regard to the prevention and containment of communicable diseases. The change also violated the fundamental human right to health, which contravened the Spanish Constitution. The study also showed differential treatment of undocumented immigrants across 7 ACs, stipulating uneven access to healthcare services. This will inform policy makers that currently enacted national or regional laws limit the access of vulnerable groups to much needed free healthcare services. Policies should be developed in the future to address this problem. In addition, the qualitative study (Chapter 4) specifically identified the primary systematic barrier encountered by HIV-positive immigrants while accessing free healthcare services: the minimum residency requirement in the AC, set by healthcare reform and consequent regional policies.

This finding specifically indicates where the policy change has to be made. On the other hand, the epidemiologic study (Chapter 3) demonstrated the disproportional LHD among immigrants compared with native-born Spaniards, indicating a possible need for more community outreach programs and nationwide interventions to educate vulnerable groups on HIV testing and subsequent care. Ultimately, this research has the potential to address systematic barriers encountered by immigrant populations while accessing necessary free healthcare services in Spain.

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Future Research

There are opportunities for future research to build upon this dissertation. In addition to the main objective, the policy implementation study (Chapter 2) also provided insights into the implementation processes employed by the 7 ACs. Findings indicated structural challenge in the rollout of healthcare policies in Spain and calls into question whether the access granted to undocumented immigrants on paper actually translated into practice at the clinic level. As this was a secondary aim of the policy implementation paper (Chapter 2), we did not review further documents or examine implementation fidelity at the local level. Further research will be needed to examine policy implementation at a more granular level to guarantee that enacted policies are actually practiced.

Findings of the qualitative paper (Chapter 4) demonstrated the need for more research on the importance of the presence of a guiding entity when HIV-positive immigrants first arrive in the host country and try to navigate a health care system. To the knowledge of the authors, no study has been done to investigate the effectiveness of third-party guidance for newly arrived immigrants to navigate public services in Spain.

The epidemiologic study (Chapter 3) found a disproportional presence of LHD among immigrants compared with native-born Spaniards. The restrictions imposed by 2012 RDL and RD and subsequent regional health policies imposed important barriers to free healthcare access on undocumented immigrants in Spain. Delaying access to health services may be particularly hazardous for undocumented

HIV-positive immigrants. This warrants further research because we did not have the ability to analyze the data based on the legal status of immigrants. Availability of evidence-based research is crucial to inform policies that appropriately allocate resources for at-risk populations, such as HIV-positive undocumented immigrants.

Overall Conclusions

This dissertation provides support for systematic barriers associated with impact of restrictive policies on the access of immigrant populations to free healthcare services. At the same time, this research

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identified possible positive association of third-party guidance with successful navigation of the Spanish healthcare system by vulnerable groups that has not been documented previously. The results demonstrated that there were several structural barriers hindering the utilization of healthcare by undocumented immigrants, regardless of the efforts taken by regional governments to grant such access.

The experiences shared by the HIV-positive immigrants in the interviews and the disproportional impact on LHD on immigrants compared with native-born Spaniards further support the need to develop and implement more comprehensive healthcare policies for all immigrants in Spain. This dissertation will inform policy makers of the gaps that need to be addressed and strategies for how civil society can be incorporated into the healthcare system to address the needs of vulnerable groups in Spain.

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References

1. Gallo P. Gené-Badia J. Cuts drive health system reforms in Spain. Health Policy. 2013;113:1-7. 2. National Institute of Statistics. Population Figures at 1 January 2019. Migrations Statistics. Provisional Data. Spain: National Institute of Statistics 2018. Accessed on January 20, 2020. https://www.ine.es/en/prensa/cp_e2019_p_en.pdf 3. Secretaría del Plan Nacional sobre el Sida/Centro Nacional de Epidemiología. Área de Vigilancia y Conductas de Riesgo Vigilancia epidemiológica del VIH/Sida en España: Sistema de información sobre nuevos diagnósticos de VIH y registro nacional de casos de Sida. 2012. Accessed on February 12, 2019. https://www.mscbs.gob.es/ciudadanos/enfLesiones/enfTransmisibles/sida/vigilancia/InformeVIHsida _Junio2012.pdf 4. Secretaría del Plan Nacional sobre el Sida/Centro Nacional de Epidemiología. Área de Vigilancia y Conductas de Riesgo. Vigilancia epidemiológica del VIH/Sida en España: Sistema de información sobre nuevos diagnósticos de VIH y registro nacional de casos de Sida. 2015. Accessed Accessed on February 12, 2019. https://www.mscbs.gob.es/ciudadanos/enfLesiones/enfTransmisibles/sida/vigilancia/InformeVIH_SI DA_2015.pdf 5. Secretaría del Plan Nacional sobre el Sida/Centro Nacional de Epidemiología. Área de Vigilancia y Conductas de Riesgo. Vigilancia epidemiológica del VIH/Sida en España: Sistema de información sobre nuevos diagnósticos de VIH y registro nacional de casos de Sida. 2011. Accessed on February 12, 2019. https://www.mscbs.gob.es/ciudadanos/enfLesiones/enfTransmisibles/sida/vigilancia/InformeVIHSida _Junio_2011.pdf 6. Secretaría del Plan Nacional sobre el Sida/Centro Nacional de Epidemiología. Área de Vigilancia y Conductas de Riesgo. Vigilancia epidemiológica del VIH/Sida en España: Sistema de información sobre nuevos diagnósticos de VIH y registro nacional de casos de Sida. 2013. Accessed on February 12, 2019. https://www.mscbs.gob.es/ciudadanos/enfLesiones/enfTransmisibles/sida/vigilancia/InformeVIHSida _Junio2013.pdf 7. Secretaría del Plan Nacional sobre el Sida/Centro Nacional de Epidemiología. Área de Vigilancia y Conductas de Riesgo. Vigilancia epidemiológica del VIH/Sida en España: Sistema de información sobre nuevos diagnósticos de VIH y registro nacional de casos de Sida. 2014. Accessed on February 12, 2019. https://www.mscbs.gob.es/ciudadanos/enfLesiones/enfTransmisibles/sida/vigilancia/InformeVIHSida _Junio2014.pdf 8. Secretaría del Plan Nacional sobre el Sida/Centro Nacional de Epidemiología. Área de Vigilancia y Conductas de Riesgo. Vigilancia epidemiológica del VIH/Sida en España: Sistema de información sobre nuevos diagnósticos de VIH y registro nacional de casos de Sida. 2016. Accessed on February 12, 2019. https://www.mscbs.gob.es/ciudadanos/enfLesiones/enfTransmisibles/sida/vigilancia/InformeVIH_SI DA_2016.pdf 9. The Ministry of Health, Social Services and Equality of Spain, the Institute of Social Development and Peace of the University of Alicante, The University of Valencia and the WHO Regional Office for Europe. Spain: assessing health system capacity to manage sudden large influxes of migrants. Joint report. World Health Organization 2018. Accessed on January 15th, 2020. http://www.euro.who.int/en/countries/spain/publications/spain-assessing-health-system-capacity-to- manage-sudden-large-influxes-of-migrants-2018 10. Burgos AC, Sueiras CJ. La posición innovadora Española en el context de la UE-27. La Revista Información Comercial Española 2011;860:17-36.

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11. Derechos Humanos en la fronter sur 2014. Seville: Andalusian Association for Human Rights 2014. Accessed on February 1, 2020. www.apdha.org/media/fonrtera_sur_2014_web.pdf 12. Lucha contra la inmigración irregular. Balance 2013. Madrid Spanish Ministry of the Interior 2013. Accessed on February 15th, 2020. www.interior.gob.es/documents/10180/1207668/balance_2013_inmigracion_irregular.pdf 13. Biswas D, Toebes B, Jjern A, et al. Access to health care for undocumented immigrants from a human rights perspective: a comparative study of Denmark, Sweden, and the Netherlands. Health Human Rights 2001;14:49-60. 14. Chauvin P, Parizot I, Simonnot N. Access to health care for undocumented immigrants in 11 European countries. Médicins du Monde European Observatory on access to healthcare. Médicins du Monde 2009;154 inserm-00419971. 15. Llop-Girones A, Vargas Lorenzo I, Garcia-Subirats I et al. Immigrants’ access to health care in Spain: a review [article in Spanish]. Rev Esp Salud Publica. 2014;88(6):715-734.

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APPENDIX A: CHAPTER 1 METHODOLOGIC NOTES

Appendix A.I: Three Main Changes Under the 2012 RDL and RD 1. Redefining of Services Into Two Portfolios 2. Types of Beneficiaries 3. User Contributions (Fees) 1.1. “Common” portfolio: 2.1. “Insured”: 3.1. Long-term unemployed and noncontributory pensioners – 0%. The basic common basket which includes “all prevention, diagnosis, A. The part of the population who have paid in treatment and rehabilitation activities that take place in healthcare some amount of social security, and thus have 3.2. Workers with an income: centers or social healthcare centers, as well as urgent patient either been employed (including self-employed) transport.” This basket is entirely covered by public financing. or receive regular benefits from the Social A. Less than €18,000/year – 40%; Security system; B. More than €18,000/year – 50%; Supplementary common basket, which includes “benefits that are C. More than €100,000/year – 60%. provided by means of ambulatory dispensation and are subject to B. Persons who are Spanish nationals residing user contribution (pharmaceutical benefits, orthoprosthetic benefits, in Spain, are nationals of the EU or EEA and are 3.3. Pensioners with an income: dietetic products, and nonurgent patient transport).” Please see registered in the Central Registry of Foreign specific user contribution fees in column 3 of this table. Nationals, or are nationals of a third country A. Less than €18,000/year – 10% (€8 who lawfully reside in Spain, provided they are maximum/month); Accessory service common basket, which includes “all activities, not covered by their country of origin and their B. More than €18,000/year – 10% services and techniques that are not considered essential although may current annual income is not higher than (€18 maximum/month); contribute or support the improvement in chronic pathologies.” €100,000. C. More than €100,000/year – 60% Provided services under the basket are subject to user (€60 maximum/month). contribution and/or reimbursement. The cost of the accessory 2.2. Beneficiaries of an “insured” person: services is billed by the providers to the regional health services. Final Invoice and copayment amount are determined according to assigned Spouses, former spouses (in case of continued financial limits (please see column 3 of this table) for an individual dependency), children, and siblings, provided case and is approved by MSSSI. that they are under age 26 (or over age 26 in cases of disability with a disability rating of 1.2. “Complementary” portfolio: 65% or higher), and minors who are under guardianship of the spouse or of other insured Additional service baskets created by the ACs. The developed baskets person. should include at least a basic common basket in its basic, supplementary and accessory modes. Designed additional service 2.3. Persons who do not fall into any of these baskets are covered by regional funds. categories are allowed to purchase healthcare benefits in the amount of predefined fee under a special agreement. Data from Ministry of Health, Social Services and Equality. National Health System of Spain Annual Report 2012. AC, autonomous community; EU, European Union; EEA, European Economic Area; MSSSI, Ministry of Health, Social Services, and Equality; RD, Royal Decree; RDL, Royal Decree Law.

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APPENDIX B: CHAPTER 2 METHODOLOGIC NOTES

Appendix B.I: Guide for the Semistructured Interview

Personal Information:

Please indicate your full name: Sex: Your current professional position: Number of years in current position: Which Autonomous Community (AC) do you represent: Please indicate if you have only worked on HIV policy development or in other policy areas as well? If yes, please specify what other type of policy areas have you worked in?

PART 1: 16/2012 RDL and 1192/2012 RD

1. Adoption of 16/2012 RDL and 1192/2012 RD (before the 18th December 2013 change resulting from the “Healthcare Interventions in Situations of Public Health Risk””):

1.1 How were 16/2012 RDL and 1192/2012 RD adopted in your autonomous community in relation to healthcare services for HIV infection in undocumented immigrants?

• Adopted exactly as proposed by the central government. Specifically, regardless of HIV status: healthcare was not free for undocumented immigrants and persons over 26 years who have never been employed aside from minors under 18 years, pregnant women, and those suffering medical emergencies. Copayment was required based on income.

• Adopted with adjustments. Specifically, HIV-positive undocumented immigrants were still able to access for free ALL or SOME healthcare services despite their legal status or income.

Please specify which HIV healthcare services were provided free of charge and upload relevant document(s).

• Please expand if neither of provided options fit.

Request relevant governmental document(s) in cases where adjustments were made.

1.2 Which key personnel – both within and outside the administration – took an initiative to develop a modification to the policy specifically targeting HIV-positive undocumented immigrants and what were their roles.

Please indicate the job title of the key personnel and the role they played in developing the policy.

2. Implementation of 16/2012 RDL and 1192/2012 RD (before the 18th December 2013 change resulting from the “Healthcare Interventions in Situations of Public Health Risk”):

2.1 How were the policy changes delivered to the hospitals and other healthcare providers?

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• Hard copy of 16/2012 RDL and 1192/2012 RD (together with amendments made by an AC, if applicable) or email with the same information was delivered to all healthcare providers. • Main changes were summarized and delivered to all healthcare providers by mail or email. • Other; please specify.

2.2 Were separate governmental instructions/governmental documents with summary of changes sent to HIV healthcare providers specifically indicating which services were free of charge and to whom?

• YES. • NO. • Other; please specify.

3. Monitoring of the implementation of 2012 RDL and RD:

3.1 Was there any mechanism to monitor the implementation of the above reforms in HIV clinics or in other healthcare settings?

• YES. If so, please provide details on how monitoring was done for 2012 RDL and RD. • NO. • Other; please specify.

3.2 Did you receive (or conduct yourself) reports, statistics, complaints, observations, or any notice from healthcare providers and/or patients on how implemented changes affected HIV-positive persons or specifically HIV-positive immigrants (undocumented or documented)?

• YES. Please specify what type of information was delivered to you. Request relevant document(s). • NO. • Other; please specify.

PART 2: “Healthcare Interventions in Situations of Public Health Risk”

1. Adoption of interterritorial health council agreement “Healthcare interventions in situations of public health risk”:

1.1 How was the 2013 interterritorial health council agreement “Healthcare interventions in situations of public health risk” adopted in your autonomous community in relation to HIV services for undocumented immigrants?

• Implemented exactly as proposed by central government. Specifically, HIV-positive undocumented immigrants, are able to access healthcare services free of charge.

• Implemented with adjustment.

Specifically, HIV-positive undocumented immigrants, are able to access for free ALL or SOME healthcare services despite their legal status or income.

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Please specify which healthcare services HIV-positive undocumented immigrants are able to access free of charge.

• Please expand if neither of provided options fit.

Request relevant governmental document(s) in cases where adjustments were made.

1.2 Which key personnel – both within and outside the administration – took the initiative to develop a modification to the policy specifically targeting HIV-positive undocumented immigrants and what was their role in the organization.

Please indicate the job title of the key personnel and the role they played in developing the policy.

2. Implementation of the “Healthcare interventions in situations of public health risk”:

2.1 How was the policy change of 2013 delivered to the hospitals and other healthcare providers?

• A hard copy of the 2013 changes (together with amendments made by the AC, if applicable) or email with the same information was delivered to all healthcare providers. • Changes were summarized and delivered to all healthcare providers by mail or email. • Other; please specify.

2.2 Were separate governmental instructions/governmental documents with summary of changes sent to the HIV-healthcare providers specifically indicating which services are free of charge and to whom?

• YES. • NO. • Other; please specify.

3. Monitoring of the implementation of “Healthcare interventions in situations of public health risk”:

3.1 Were there any mechanisms to monitor the implementation of the policy change in HIV clinics or in other healthcare settings?

• YES. If so, please provide details on how monitoring was done for the policy change. • NO. • Other; please specify.

3.2 Did you receive (or conduct yourself) reports, statistics, complaints, observations or any notice from healthcare providers and/or patients on how implemented changes affected HIV-positive persons or specifically HIV-positive immigrants (undocumented or documented)?

• YES. Please specify what type of information was delivered to you. If you possess the actual report/notice/complaint.

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Request relevant document(s). • NO. • Other; please specify.

PART 3: Regional policy changes after December, 2013

1. Where there any other regional policy changes adopted after the 2012 RDL and RD, and 2013 “Healthcare interventions in situations of public health risk,” addressing specifically healthcare service access of HIV-positive undocumented immigrants?

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APPENDIX C: CHAPTER 3 METHODOLOGIC NOTES

Appendix C.I: The List of the Centers and Investigators Participating in CoRIS

Executive committee

Santiago Moreno, Inma Jarrín, David Dalmau, Maria Luisa Navarro, Maria Isabel González, Federico

Garcia, Eva Poveda, Jose Antonio Iribarren, Félix Gutiérrez, Rafael Rubio, Francesc Vidal, Juan Berenguer,

Juan González, M Ángeles Muñoz-Fernández.

Fieldwork data management and analysis

Inmaculada Jarrin, Belén Alejos, Cristina Moreno, Carlos Iniesta, Luis Miguel Garcia Sousa, Nieves Sanz

Perez, Marta Rava.

BioBanK HIV Hospital General Universitario Gregorio Marañón (Madrid)

M Ángeles Muñoz-Fernández, Irene Consuegra Fernández.

Hospital General Universitario de Alicante (Alicante)

Esperanza Merino, Gema García, Irene Portilla, Iván Agea, Joaquín Portilla, José Sánchez-Payá., Juan

Carlos Rodríguez, Lina Gimeno, Livia Giner, Marcos Díez, Melissa Carreres, Sergio Reus, Vicente Boix,

Diego Torrús.

Hospital Universitario de Canarias (San Cristóbal de la Laguna)

Ana López Lirola, Dácil García, Felicitas Díaz-Flores, Juan Luis Gómez, María del Mar Alonso, Ricardo

Pelazas., Jehovana Hernández, María Remedios Alemán, María Inmaculada Hernández.

Hospital Universitario Central de Asturias (Oviedo)

Víctor Asensi, Eulalia Valle, María Eugenia Rivas Carmenado, Tomás Suárez-Zarracina Secades, Laura

Pérez Is.

Hospital Universitario 12 de Octubre (Madrid)

Rafael Rubio, Federico Pulido, Otilia Bisbal, Asunción Hernando, Lourdes Domínguez, David Rial

Crestelo, Laura Bermejo, Mireia Santacreu.

Hospital Universitario de Donostia (Donostia-San Sebastián)

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José Antonio Iribarren, Julio Arrizabalaga, María José Aramburu, Xabier Camino, Francisco Rodríguez-

Arrondo, Miguel Ángel von Wichmann, Lidia Pascual Tomé, Miguel Ángel Goenaga, Mª Jesús Bustinduy,

Harkaitz Azkune, Maialen Ibarguren, Aitziber Lizardi, Xabier Kortajarena, Mª Pilar Carmona Oyaga,

Maitane Umerez Igartua.

Hospital General Universitario De Elche (Elche)

Félix Gutiérrez, Mar Masiá, Sergio Padilla, Catalina Robledano, Joan Gregori Colomé, Araceli Adsuar,

Rafael Pascual, Marta Fernández, José Alberto García, Xavier Barber, Vanessa Agullo Re, Javier Garcia

Abellán, Reyes Pascual Pérez, María Roca.

Hospital Universitari Germans Trias i Pujol (Badalona)

Roberto Muga, Arantza Sanvisens, Daniel Fuster.

Hospital General Universitario Gregorio Marañón (Madrid)

Juan Berenguer, Juan Carlos López Bernaldo de Quirós, Isabel Gutiérrez, Margarita Ramírez, Belén

Padilla, Paloma Gijón, Teresa Aldamiz-Echevarría, Francisco Tejerina, Francisco José Parras, Pascual

Balsalobre, Cristina Diez, Leire Pérez Latorre, Chiara Fanciulli.

Hospital Universitari de Tarragona Joan XXIII (Tarragona)

Francesc Vidal, Joaquín Peraire, Consuelo Viladés, Sergio Veloso, Montserrat Vargas, Montserrat Olona,

Anna Rull, Esther Rodríguez-Gallego, Verónica Alba, Alfonso Javier Castellanos, Miguel López-Dupla.

Hospital Universitario y Politécnico de La Fe (Valencia)

Marta Montero Alonso, José López Aldeguer, Marino Blanes Juliá, María Tasias Pitarch, Iván Castro

Hernández, Eva Calabuig Muñoz, Sandra Cuéllar Tovar, Miguel Salavert Lletí, Juan Fernández Navarro.

Hospital Universitario La Paz/IdiPAZ (Madrid)

Juan González-Garcia, Francisco Arnalich, José Ramón Arribas, Jose Ignacio Bernardino de la Serna, Juan

Miguel Castro, Ana Delgado Hierro, Luis Escosa, Pedro Herranz, Víctor Hontañón, Silvia García-

Bujalance, Milagros García López-Hortelano, Alicia González-Baeza, Maria Luz Martín-Carbonero, Mario

Mayoral, Maria Jose Mellado, Rafael Esteban Micán, Rocio Montejano, María Luisa Montes, Victoria

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Moreno, Ignacio Pérez-Valero, Guadalupe Rúa Cebrián, Berta Rodés, Talia Sainz, Elena Sendagorta,

Natalia Stella Alcáriz, Eulalia Valencia.

Hospital San Pedro Centro de Investigación Biomédica de La Rioja (Logroño)

José Ramón Blanco, José Antonio Oteo, Valvanera Ibarra, Luis Metola, Mercedes Sanz, Laura Pérez-

Martínez.

Hospital Universitario Miguel Servet (Zaragoza)

Piedad Arazo, Gloria Sampériz.

Hospital Universitari MutuaTerrassa (Terrasa)

David Dalmau, Angels Jaén, Montse Sanmartí, Mireia Cairó, Javier Martinez-Lacasa, Pablo Velli, Roser

Font, Marina Martinez, Francesco Aiello

Complejo Hospitalario de Navarra (Pamplona)

Maria Rivero Marcotegui, Jesús Repáraz, María Gracia Ruiz de Alda, María Teresa de León Cano, Beatriz

Pierola Ruiz de Galarreta.

Corporació Sanitària Parc Taulí (Sabadell)

María José Amengual, Gemma Navarro, Manel Cervantes Garcia, Sonia Calzado Isbert, Marta Navarro

Vilasaro.

Hospital Universitario de La Princesa (Madrid)

Ignacio de los Santos, Jesús Sanz Sanz, Ana Salas Aparicio, Cristina Sarria Cepeda, Lucio Garcia-Fraile

Fraile, Enrique Martín Gayo.

Hospital Universitario Ramón y Cajal (Madrid)

Santiago Moreno, José Luis Casado Osorio, Fernando Dronda Nuñez, Ana Moreno Zamora, Maria Jesús

Pérez Elías, Carolina Gutiérrez, Nadia Madrid, Santos del Campo Terrón, Sergio Serrano Villar, Maria

Jesús Vivancos Gallego, Javier Martínez Sanz, Usua Anxa Urroz, Tamara Velasco, Alejandro Vallejo.

Hospital General Universitario Reina Sofía (Murcia)

Enrique Bernal, Alfredo Cano Sanchez, Antonia Alcaraz García, Joaquín Bravo Urbieta, Ángeles Muñoz

Perez, Maria Jose Alcaraz, Maria del Carmen Villalba.

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Hospital Nuevo San Cecilio (Granada)

Federico García, José Hernández Quero, Leopoldo Muñoz Medina, Marta Alvarez, Natalia Chueca, David

Vinuesa García, Clara Martinez-Montes, Carlos Guerrero Beltrán, Adolfo de Salazar Gonzalez, Ana

Fuentes Lopez.

Centro Sanitario Sandoval (Madrid)

Jorge Del Romero, Montserrat Raposo Utrilla, Carmen Rodríguez, Teresa Puerta, Juan Carlos Carrió, Mar

Vera, Juan Ballesteros, Oskar Ayerdi.

Hospital Clínico Universitario de Santiago (Santiago de Compostela)

Antonio Antela, Elena Losada.

Hospital Universitario Son Espases (Palma de Mallorca)

Melchor Riera, María Peñaranda, Mª Angels Ribas, Antoni A Campins, Carmen Vidal, Francisco Fanjul,

Javier Murillas, Francisco Homar, Helem H Vilchez, Maria Luisa Martin, Antoni Payeras.

Hospital Universitario Virgen de la Victoria (Málaga)

Jesús Santos, Cristina Gómez Ayerbe, Isabel Viciana, Rosario Palacios, Carmen Pérez López, Carmen

Maria Gonzalez-Domenec.

Hospital Universitario Virgen del Rocío (Sevilla)

Pompeyo Viciana, Nuria Espinosa, Luis Fernando López-Cortés.

Hospital Universitario de Bellvitge (Hospitalet de Llobregat) (Barcelona)

Daniel Podzamczer, Arkaitz Imaz, Juan Tiraboschi, Ana Silva, María Saumoy, Paula Prieto.

Hospital Universitario Valle de Hebrón (Barcelona)

Esteban Ribera, Adrian Curran.

Hospital Costa del Sol (Marbella)

Julián Olalla Sierra, Javier Pérez Stachowski., Alfonso del Arco, Javier de la torre, José Luis Prada, José

María García de Lomas Guerrero.

Hospital General Universitario Santa Lucía (Cartagena)

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Onofre Juan Martínez, Francisco Jesús Vera, Lorena Martínez, Josefina García, Begoña Alcaraz, Amaya

Jimeno.

Complejo Hospitalario Universitario a Coruña (A Coruña)

Ángeles Castro Iglesias, Berta Pernas Souto, Álvaro Mena de Cea.

Hospital Universitario Basurto (Bilbao)

Josefa Muñoz, Miren Zuriñe Zubero, Josu Mirena Baraia-Etxaburu, Sofía Ibarra Ugarte, Oscar Luis Ferrero

Beneitez, Josefina López de Munain, Mª Mar Cámara López, Mireia de la Peña, Miriam Lopez, Iñigo Lopez

Azkarreta.

Hospital Universitario Virgen de la Arrixaca (El Palmar)

Carlos Galera, Helena Albendin, Aurora Pérez, Asunción Iborra, Antonio Moreno, Maria Angustias

Merlos, Asunción Vidal, Marisa Meca.

Hospital de la Marina Baixa (La Vila Joiosa)

Concha Amador, Francisco Pasquau, Javier Ena, Concha Benito, Vicenta Fenoll, Concepción Gil Anguita,

José Tomás Algado Rabasa.

Hospital Universitario Infanta Sofía (San Sebastián de los Reyes)

Inés Suárez-García, Eduardo Malmierca, Patricia González-Ruano, Dolores Martín Rodrigo, Mª Pilar Ruiz

Seco.

Hospital Universitario de Jaén (Jaén)

Mohamed Omar Mohamed-Balghata, María Amparo Gómez Vidal.

Hospital San Agustín (Avilés)

Miguel Alberto de Zarraga.

Hospital Clínico San Carlos (Madrid)

Vicente Estrada Pérez, Maria Jesús Téllez Molina, Jorge Vergas García, Juncal Pérez-Somarriba Moreno.

Hospital Universitario Fundación Jiménez Díaz (Madrid)

Miguel Górgolas, Alfonso Cabello, Beatriz Álvarez, Laura Prieto.

Hospital Universitario Príncipe de Asturias (Alcalá de Henares)

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José Sanz Moreno, Alberto Arranz Caso, Cristina Hernández Gutiérrez, María Novella Mena.

Hospital Clínico Universitario de Valencia (València)

María José Galindo Puerto, Ramón Fernando Vilalta, Ana Ferrer Ribera.

Hospital Reina Sofía (Córdoba)

Antonio Rivero Román, Antonio Rivero Juárez, Pedro López López, Isabel Machuca Sánchez, Mario Frias

Casas, Angela Camacho Espejo.

Hospital Universitario Severo Ochoa (Leganés)

Miguel Cervero Jiménez, Rafael Torres Perea.

Nuestra Señora de Valme (Sevilla)

Juan A Pineda, Pilar Rincón Mayo, Juan Macías Sanchez, Nicolás Merchante Gutierrez, Luis Miguel Real,

Anais Corma Gomez, Marta Fernández Fuertes, Alejandro Gonzalez-Serna.

Hospital Álvaro Cunqueiro (Vigo)

Eva Poveda, Alexandre Pérez, Manuel Crespo, Luis Morano, Celia Miralles, Antonio Ocampo, Guillermo

Pousada

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APPENDIX D: CHAPTER 4 METHODOLOGIC NOTES

Appendix D.I: Semistructured Interview Guide Script

A. Personal information

The aim of this guide is to describe the life narrative of the immigrant.

1. Please tell me about you: § Your full name § Age § Sex § Country of birth § Family situation (marital status, if all family members are here with you in Spain) § Education 2. Please tell me about your current situation: § Your current professional position/ economic situation § Number of years in current position (if applicable) § Legal or administrative status or issues in Spain § Language knowledge 3. Tell me about your experience of immigration to Spain: § Country of origin § Reason of immigration § Immigrated alone or with other family members, friends § In which autonomous community and city or village do you reside? § Approximately since when have you permanently resided in Spain: MM/YYYY § Issues or positive experiences in immigrating and adapting to living in Spain

B. Information about HIV

The aim of this part is to understand HIV disease awareness of the immigrant, to collect information on his/her sexual life, and to understand what his/her initial experiences were during and after getting diagnosed as HIV-positive.

1. What is your knowledge about HIV? § Transmission § Prevention § Treatment 2. Can you tell me about your sexual partners? § Sexual orientation § Number of partners (if applicable) 3. What is your experience of living with HIV? § Why did you get tested for HIV? § Did you know where to go to have an HIV test done? § Approximately when you were diagnosed HIV-positive and where: MM/YYYY § Did someone explain to you what it means to have HIV and how to manage it, or what were the next steps? Was it clear for you which services you would need to access after you were diagnosed HIV-positive and where to go? § What is your perception of HIV infection § Do your family and friends know you are HIV-positive? Do they support you in managing the infection?

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§ Did your life change after you were diagnosed as HIV-positive? How? Did it affect your relationships with family members, friends or coworkers? § What are your experiences with discrimination due to your HIV-positive status? § What communication do you have with or knowledge of other people living with HIV- positive status in Spain or back home?

C. Usage and access to necessary services

The aim of this part is to determine which services the immigrant is utilizing and what barriers he/she is encountering (or experienced in past) while accessing necessary testing or healthcare.

1. Which healthcare system are you utilizing at the moment? § Public healthcare § Private insurance § None of the above If, none of the above where do you go or what do you do when you need medical care? 2. Where you tested for HIV in Spain? If yes: § Did you know where to go? § Describe your experiences (accessing a testing facility, how were you treated, how was information delivered to you) § Do you know if you were late-to-diagnose? Late to treat? 3. Are you currently in treatment for HIV or a related health condition? If yes: § What treatment are you currently on? § Why are you using the service provider that you are using? § Describe your experiences (accessing services, how were you treated, how was information delivered to you) 4. Are you paying for the services provided for HIV treatment or other related health conditions? If yes:

What is the percentage of the fee you are paying? Was there ever a case when you could not pay? What happened?

D. Information and effect of the 2012 healthcare reform

The aim of this part is to determine how much information the immigrant was provided or understood about limitations imposed by the 2012 healthcare reform and how and/or if it changed their experience of accessing necessary healthcare services.

1. Were you in Spain in 2012? 2. Were you getting HIV-related healthcare in Spain in 2010? Or in 2018? 3. Can you tell me which healthcare services you think you are entitled to access free of charge and for which services you have to pay or co-pay? § Emergency care § Blood tests, radiology, genecology, urology, or other health services necessary upon need (not including dentist, and/or any services that are more esthetic procedures than health related). § HIV testing, pre-exposure prophylaxis treatment, antiretroviral treatment, follow-up visits, health guidance related to HIV infection. 4. Did you ever had difficulties in accessing healthcare services?

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If yes: § Where (Spain, your home country)? § When (approximately what year)? § Why (inability to pay, denied by healthcare professional, not sure where to seek required care)? 5. Where you ever been denied right to healthcare services? If yes: § Where (Spain, your home country)? § When (approximately what year)? § Why (inability to pay, denied by healthcare professional, not sure where to seek required care)? § What was the explanation given to you? 6. Are you aware of the limitations imposed by the 2012 health reform on immigrants? 7. Are you aware of changes made to the 2012 healthcare reform in an autonomous community you reside or changes issued afterwards?

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