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HIV care in specialized services: an analysis in the light of programmatic vulnerability
Rafaela Fidelis Lima Silvério: Postgraduate Program in Public Health, Institute of Public Health. Federal Fluminense University.
Email: rafaelafidelis@id.uff.br
https://orcid.org/0000-0002-3239-9891

Aluísio Gomes da Silva Júnior: Institute of Public Health, Federal Fluminense University.
Email: agsilvajunior@id.uff.br
https://orcid.org/0000-0003-2445-3963

Drieli Oliveira Silva: Postgraduate Program in Public Health, Multidisciplinary Health Institute, Anísio Teixeira Campus, Vitória da Conquista, Federal University of Bahia.
E-mail: drielioliveira07@gmail.com
http://orcid.org/0000-0002-7735-6895

Patty Fidelis de Almeida: Institute of Public Health. Federal Fluminense University.
Email: pattyfidelis@id.uff.br
https://orcid.org/0000-0003-1676-3574

ABSTRACT
The aim of this study was to analyze and understand the care experiences of people living with HIV, identifying enablers of and barriers to access to care. We conducted a qualitative evaluative study based on 45 in-depth interviews with people living with HIV undergoing treatment in specialized polyclinics. A thematic analysis was performed using a theoretical framework structured around the following two dimensions of programmatic vulnerability: access to health services and comprehensiveness of care. Despite achieving viral suppression, most of the participants did not make frequent use of primary care services. Medical appointments, laboratory tests and individual preventive and educational actions were concentrated in polyclinics. The main point of reference for care were infectologists, without the involvement of a multiprofessional team; however, access to other specialists was available via internal referral within the polyclinics. Care provision for other health conditions was partial and complemented by private services. Although HIV patients in polyclinics receive support for both medical and relational health demands, comprehensive care remains a challenge. We suggest the development of a patient-based model of shared care provided across all levels of care with changes in the modus operandi of primary and specialized care services.
Keywords: HIV/AIDS; Health Vulnerability; Secondary Health Care; Comprehensive Care.

INTRODUCTION
In 2022, approximately 39 million people were living with HIV worldwide, 620,000 people died of HIV-related illnesses and 1.3 million individuals tested positive1. Multisectoral strategies to control the epidemic, prevent the spread of the virus up to 2025 and end AIDS by 2030 include the 95-95-95 targets for testing, treatment and viral suppression and the 10-10-10 targets addressing barriers to access to services, stigma, discrimination, inequalities and gender violence against people living with HIV2.
Following the development of antiretroviral therapy (ART), AIDS became a manageable chronic disease and morbidity and mortality were reduced3. However, people living with HIV face pervasive stigma and social, individual and programmatic vulnerability, increasing the chance of exposure to risk factors and illness4. Poor housing conditions, unemployment and low education and income levels are associated with greater risk of HIV infection and lower likelihood of seeking testing5. Culture and religiosity can have a negative impact on seeking testing and adherence to ART, as fasting often includes medication6. Women who experience physical or sexual intimate partner violence are 3.2 times more likely to acquire HIV and have lower rates of viral suppression and ART uptake7.
The approach to HIV care varies around the world. In the US, Medicaid and the Ryan White HIV/AIDS Program are the largest source of insurance coverage for people with HIV, providing specialty care and medications, including ART8. In countries in Sub-Saharan Africa, around 40% of free ART is funded by international donations9. In Uganda and Tanzania, HIV care is provided by primary care services without integration of HIV and chronic disease services10. In England, ART is provided by the National Health Service and people undergoing treatment in specialist HIV clinical services consent to shared care of comorbidities in primary care services11.
In Brazil, the country\'s public health system, o Sistema Único de Saúde (SUS) or Unified Health System, provides universal free access to HIV care and is the exclusive provider of ART, which is recognized as an international human right12. The introduction of rapid testing in primary care services in 201213 demonstrated that HIV care previously delivered by specialized services for sexually transmitted infections (STIs), AIDS and viral hepatitis could be gradually decentralized to primary care services. However, the services responsible for providing longitudinal care vary according to the decentralized organization model employed by the SUS and the approach adopted by local health systems, revealing lack of consensus on this matter and therefore limited research in this area. São Paulo, the largest municipality in Brazil and a pioneer in the implementation of multiprofessional and intersectoral HIV care programs, maintains a centralized specialized services approach combined with shared care in primary care services for comorbidities, health promotion and disease prevention, and diagnosis, and to encourage patient affiliation to health services14. In another major capital city, Rio de Janeiro, the decentralization of HIV care to primary care services has been incentivized since 2013, with treatment being based on risk stratification and respect for patient choice15.
Drawing on the experiences of people living with HIV, this study sought to answer the following research question: What are the enablers of and barriers to access faced by people living with HIV undergoing treatment in specialized regional polyclinics? We used a theoretical framework based on the dimensions of programmatic vulnerability4,16, which consider the performance of social services, with emphasis on the health sector, in guaranteeing quality of life and minimizing (or increasing) exposure to health risks through the development of promotion and protection actions4.
METHODOLOGY
We conducted a qualitative evaluative study based on in-depth interviews with people living with HIV undergoing treatment in specialized polyclinics, which are referral services in the municipality where the study was undertaken. Based on the interviewees’ accounts, we sought to understand and analyze the care experiences of people living with HIV, identifying enablers of and barriers to access arising from programmatic vulnerability resulting from a care model centered on specialist services.
Study setting
The study was undertaken in a municipality in the state of Rio de Janeiro with approximately 500,000 inhabitants. The state is divided into eight health regions in which primary care facilities linked to specialized regional polyclinics constitute the first level of care, supported by a network of referral hospitals. In 2018, 4,529 people living with HIV (latest available data) were registered in the municipality’s HIV/AIDS medication system. The study setting comprises the seven regional polyclinics, which are the main care services used by these individuals.
Each polyclinic has a dispensing center and the minimum multiprofessional team recommended by the Ministry of Health for specialized STI/HIV/AIDS care services: infectologist, nurse, auxiliary nurse and/or nurse technician, and social worker and/or psychologist17. However, polyclinics also have other specialties for referral from primary care services.
Data collection and study participants
We conducted 45 face-to-face semi-structured interviews between December 2021 and June 2022 using a guide designed to obtain information on socioeconomic characteristics and care seeking experiences, including: access to HIV testing, appointments with infectologists and other professionals, tests and medications; access to health promotion and prevention actions; affiliation and utilization of primary care services, the polyclinic and other points of the health care network; and other care trajectories outside the formal system. This article focuses on care actions in polyclinics.
The interviews had an average duration of one hour and were recorded and transcribed in full. Data on prescribed ART and laboratory tests were collected from the participants’ patient records. The interviews were conducted until data saturation was achieved and the data were representative of the seven polyclinics. To ensure confidentiality, the interviews were conducted in a private room inside the clinic or a place outside the polyclinic chosen by the interviewee.
The inclusion criteria were patients living in the municipality aged over 18 years who had tested positive for HIV at least one year before the interview. The participants were selected with the help of polyclinic staff and invited to participate while waiting to see the infectologist or immediately after the appointment.
Data analysis
Thematic analysis was performed to obtain an understanding of the general context and select significant extracts regarding patient experiences. The latter were organized into core themes in a spreadsheet to group individual experiences and facilitate interpretation of the findings18.
The results were analyzed drawing on the concepts of programmatic vulnerability proposed by Ayres et al.4 and Pinho and França-Junior16. While all dimensions of vulnerability – individual, social and programmatic – are dynamic and inter-related and influence care seeking and adherence behaviors, this study focuses on aspects related to access to and use of health services.
The narratives were therefore analyzed from the perspective of the following two dimensions and their respective categories: a) Access to health services – regular health services, diagnosis and HIV testing, appointments with an infectologist, other professionals and HIV care referral services and general health services; health service infrastructure and facilities, communication and patient tracing; availability of ART and other medications, laboratory tests for HIV/AIDS treatment; and b) Comprehensiveness of care - health promotion and prevention actions; interprofessional care; access to other specialists and points of the health care network.
The study was approved by the research ethics committee of the Institute of Human Sciences at the Fluminense Federal University (reference codes n.4.456.756 and CAAE 34986920.8.0000.8160) and received the consent of the local government. To ensure confidentiality, participants were identified using an alphanumeric code consisting of the interview number and letter attributed to the respective polyclinic. The names of the professionals were deleted.
RESULTS
Participant profile and access to HIV testing
A little over half of the participants (51.1%) identified as male, 51.1% had a partner and 57.8% had children. Almost half the sample (48.9%) were aged between 41 and 60 years. Most participants (75.5%) were brown or black, 44.4% had completed secondary education, 53.3% had a family income of up to two minimum wages and 53.3% were breadwinners. Some of the interviewees were unemployed (13.3%) or receiving benefits (33.3%). Most of the participants who worked (62.2%) had occupations requiring primary or secondary school level qualifications. Almost half of the participants did not do physical activity (48.9%), while over half drank (51.1%) and 29% smoked (Table 1).
Table 1
Access to health services
Over half of the participants (53.3%) were diagnosed HIV+ between 2011 and 2020. Testing was performed in the municipality in 71.1% of cases. Most of the tests were performed in specialized services/polyclinics (42.2%), followed by private laboratories (17.8%), public hospitals (17.8%), private hospitals (4.4%), primary care services (15.6%) and non-governmental organizations (2.2%).
Around 44% of the participants did the test because they had clinical signs and symptoms of HIV. Most of the participants who were symptomatic at the time of testing were men (80%) and reported doing the test because of worsening symptoms, admission to hospital or tuberculosis diagnosis. Some of the men did the test because they were recommended to do so by friends or family. In contrast, more than half of the participants who were asymptomatic at the time of testing (56.5%) were women, accounting for 68.4% of all women in the sample. These women reported doing the test because their partner had tested positive, some of whom had been hospitalized for AIDS or died from the disease.
Over half the participants reported being registered with a primary health care center (57.8%). However, only four reported visiting the center regularly, while only two had a detectable viral load at the time of the interview and four had a CD4 T-lymphocyte count <350 cells/mm3 (Table 2). The remaining participants visited health centers occasionally or did not visit at all because they feared breach of confidentiality, believed the health team was unprepared, or because it was easy to get an appointment at the polyclinic. Most of the participants who had private health insurance (37.8%) reported having popular health plans, which they used in parallel with or to complement polyclinic services. All participants used the polyclinic as a regular source of HIV care (Table 2).
Table 2
The main, and sometimes the only, health professional responsible for HIV care in the municipality was the infectologist. Participants felt they received longitudinal care from these professionals, with whom they established a bond, fruit of affection and trust built over time. The patients reported a high level of satisfaction with care and the relationship established. Nurses were also mentioned, although with less frequency, in four of the seven clinics (Box 1).
Infectologists were also seen as a reference point for general health, even by participants who used other points of the health care network on a sporadic basis. The participants made frequent mention of seeking appointments for non-HIV-related health problems, such as Covid-19, fever, flu, parasites, hair loss and high blood pressure. Participants without comorbidities (18) understood that there was no need to seek other types of care than that provided by the infectologist (Box 1).
The participants had appointments every 3 to 6 months, as recommended by the doctor or on the patient’s own initiative. In general, there were no delays in initiating treatment. Participants who mentioned difficulties in the initial stage highlighted disinformation at the polyclinic reception desk and verbal referral from primary care services for an appointment with an infectologist, without formal referral. Although no welcoming strategies were mentioned, first contact in polyclinics was made by nurses and was highly praised by the participants (Box 1).
In six of the seven polyclinics, the follow-up appointment date was scheduled by the doctor. This system was considered to facilitate routine and appointment show-up, especially during the Covid-19 pandemic, when the health services were overburdened. Unscheduled appointments were available for other health problems.
Some of the patients reported long appointment wait times. Waiting lines were organized by the patients in crowded corridors. Some polyclinics did not have a specific infectious disease consulting room, making it difficult to locate the right room. Complaints about bathroom facilities, drinking fountains, lack of water and cups, excess heat in consulting rooms, and lack of shade from the sun in waiting areas were common (Box 1).
box 1
Lack of communication of cancellation or rescheduling of appointments was a cause of dissatisfaction. In some polyclinics, nurses got in touch with the patients using WhatsApp; however, this service was interrupted when the professional was substituted. WhatsApp was also used as a communication channel by some infectologists to provide clinical guidance between appointments. Patients were advised by the health team of the need to reschedule appointments in the case of no-show. However, some participants reported that the service did not have a telephone, meaning that they had to go to the clinic to reschedule (Box 2).
Some health professionals tracked no-shows or withdrew ART, but only in some cases and without following any set guidelines. When this happened, patients appreciated these efforts as a form of health care and promotion of affiliation. However, most participants reported that they attended appointments assiduously and there was no need for tracking (Box 2).
All interviewees had been prescribed ART. Antiretroviral drugs were dispensed at the polyclinic every one to two months. This interval was increased to 3 months during the Covid-19 pandemic to facilitate adherence to social isolation measures. Being able to choose a clinic far away from the patient’s home was pointed out to be a positive factor for maintaining confidentiality and protection against prejudice. Only four participants reported shortages of antiretroviral drugs in the polyclinic they attended. In such cases, the patients were advised to collect the drugs from another clinic or come back the next day.
The polyclinic pharmacies were flexible in relation to the collection of antiretroviral drugs, which was very much appreciated by the patients. The drugs were dispensed upon presentation of the identity card of the patient registered with the dispensing system, without the need for a prescription. Up to three different authorized persons could also collect the drugs under the following circumstances: where the patient feared stigma, was unable to get time off work or was ill. Despite these rules, some interviewees considered the fact that the clinic only opened on working days and during business hours a barrier to access to medication (Box 2).
Reports of shortages of medications such as dipyrone, antibiotics, anti-inflammatories, propranolol, psychotropics and hormones were common. There were also shortages of medications used to treat the side effects of long term ART, such as folic acid, omeprazole, and lipid-lowering and diabetes drugs. The participants reported not being able to afford to purchase these medications and red tape for collecting these drugs at the popular pharmacy (Box 2).
Six polyclinics collected samples for CD4 and viral load tests and complementary tests, such as complete blood, glucose and lipid counts, kidney function test and urinalysis. Patients from the clinic where blood samples were not collected were directed to another polyclinic, hindering access to testing. Tests were requested every six months, and it generally took around one month to get the results.
The viral load test sample was collected on Wednesdays between 7 and 9 am. Participants from two polyclinics reported the use of a ticket system with a maximum of 20 to 30 places per day and long queues starting at 5.30 am, meaning that access to testing was considered limited by most interviewees. Other participants reported feeling exposed and experiencing breach of confidentiality during queue organization, resulting in major suffering (Box 2).
Most participants reported needing to collect the results from the polyclinic, except for the viral load/CD4 count test results, which could be viewed by the infectologist on the SISCEL (the National Network for CD4+/CD8+ Lymphocyte and HIV Viral Load Counting Laboratory Test Control System). This was flagged as a difficulty, especially when the appointment was after the laboratory closed (at 11pm), meaning that the patient had to make a separate trip to the clinic or arrive much earlier than necessary to collect the results.
Box 2
Comprehensiveness of care
Regarding health promotion and disease prevention, in all polyclinics individual guidance on healthy habits, physical exercise and diet was provided by different professionals (infectologist, nurse, nutritionist, rheumatologist, psychologist, orthopedist). Participation in collective activities was rare in almost all clinics. Patients received vaccine guidance and were vaccinated in the polyclinics (Box 3).
Almost all participants reported that they understood the information received on HIV care: dosage, side effects, the need to change the treatment regimen and importance of adherence to ART; the importance of healthy habits; check-up tests (CD4, viral load count, etc.); condom use; the “undetectable = untransmittable” concept. Participants reported feeling comfortable in being able to clarify doubts with infectologists and nurses. Some interviewees mentioned that they did not clearly understand the tests, side effects and treatments, but trusted their health to the professionals and followed the guidance. One participant, who self-declares as a transvestite (E17_A) and uses cross-sex hormones, mentioned that the length of the appointment was too short to clarify doubts (Box 3).
The participants highlighted that the guidance received had a positive effect on their HIV experiences, reinforcing the adoption of behaviors such as safe sex, and helped them accept seropositivity, live like “a normal person”, differentiate between HIV and AIDS, and overcome the fear of vertical transmission, among others.
Most interviewees reported easy access to both male and female condoms in the polyclinics. Despite availability in the clinics, reports of purchasing condoms were common, for different reasons: embarrassment of collecting condoms in front of people, preferring not to go to the clinic just to get condoms, and lack of trust in the product or complaints about quality. One of the interviewees mentioned that using the condom was like “sucking candy in a wrapper”, with the discomfort leading to sexual abstinence (Box 3).
A little over half of the participants mentioned having seen professionals in the polyclinic other than the infectologist and nurse via internal referrals and direct scheduling, with long queues beginning at dawn. The most cited professionals were psychologists (17), social workers (7), psychiatrists (5), nutritionists (3), dentists (3), GPs (2), gynecologists (2), urologists (2), neurologists (1), endocrinologists (1), rheumatologists (1), orthopedists (1), pathologists (1), obstetricians (1), dermatologists (1), and physical therapists (1). Only four participants reported needing to be referred by the primary care doctor, hindering the care trajectory.
Participants highlighted the importance of the availability of other specialties, emphasizing psychology and odontology, although only one-third received counselling from a psychologist. Many dentists reported having been seen by a SUS dentist. Difficulty accessing other professionals, such as social workers, hampered the exercise of workers\' rights and access to free transport (Box 3). Participants did not mention interprofessional approaches to care such as single treatment plans or communication between different specialists.
Mentions of referral to other points of the health care network were rare. Only five participants reported referral to other health services, for image scanning, consultation or surgery. Most participants presented the infectologist prescriptions and results of tests requested by other professionals – from primary care services, hospitals, emergency department or private specialists – for the purposes of longitudinal care or to review treatment strategies. Some participant mentioned that they did not show the prescriptions and test results but kept the infectologist informed about appointments with other health professionals (Box 3).
Participants with comorbidities underlined the incompleteness of care. For non-HIV-related health problems, interviewees often encountered difficulties accessing other health services, highlighting long procedure and result wait times. As a result, some participants ended up using private services for appointments and tests (mammogram, ultrasound, X-ray), mainly in popular clinics, or researched information and treatments on the internet (Box 3). Of the 24 participants who had appointments in private popular clinics or paid out of pocket for consultations, the most common specialists seen were dentists (7), followed by gynecologists (4), GPs (3), ophthalmologists (4), physical therapists (3), dermatologists(2), nutritionists (2), endocrinologists (2), cardiologists (2), urologists (1), ear, nose and throat specialists (1) and psychiatrists (1).
Box 3

DISCUSSION
Our findings raise questions about the availability of and access to comprehensive health care for people living with HIV, showing that care is centered on infectologists without promoting shared care across primary services and other points of the health care network. According to the participants, experiences of HIV care and care of other problems and comorbidities differed.
Most participants were socially and economically vulnerable, which is consistent with other studies5,19. However, almost all interviewees managed to control HIV infection, indicating that treatment received on the SUS was successful in maintaining an undetectable viral load1. It is also important to highlight that, despite the Covid-19 pandemic, which reduced healthcare use and placed great stress on the health system20, there were no reports of disruptions in HIV care.
Given their serological status, the clinical condition of the participants was treatable in primary care services21, benefitting from territorial-based services where comprehensiveness and care coordination are essential attributes. Confidentiality concerns, which are common among people living with HIV, especially in those undergoing treatment in primary care services10,11,22, is a key aspect to be considered in the organization of lines of care. Respecting the level of care in which the patient wishes to be treated is essential and is part of the national HIV care guidelines21. However, the possibility of undergoing treatment in primary are services, as is the case with the municipality of Rio de Janeiro15, can be key to ensuring greater affiliation with the first level of care, which requires flexibility and modifications to work processes15.
HIV testing, one of the pillars of combination prevention and essential to meeting the 95-95-95 targets (UNAIDS, 2021), was concentrated in specialized services, even after 2012, a milestone in the introduction of rapid testing in primary care services in the SUS12. Gender differences were observed in access to testing. Testing among women was generally associated with the diagnosis of a partner, reflecting the entrenchment of traditional notions of safe marital sex and testing restricted to the antenatal period23.
Regarding regular HIV care in polyclinics, the participants did not identify any barriers to access to appointments with infectologists. The latter were recognized as the main point of reference for HIV care and, in many cases, for the treatment of general health problems, including those that could be absorbed by primary care services. Infectologists were therefore considered to be responsible for the coordination of care, a function that primary care professionals rarely perform24,25.
Nevertheless, limitations were observed in the care of non-HIV-related comorbidities. Chronic age-related conditions associated with the side effects of ART and stigmas require multiprofessional and intersectoral care and shared care across primary services, specialized services, psychosocial services and other facilities that make up the health care network14,24. As a result of these limitations, one the strategies employed by patients to obtain complete care was the use of private clinics/popular private health insurance plans. Participants therefore encountered the same difficulties identified in other settings and health systems when trying to access support services, especially specialty care26,27.
Organizational problems and poor facilities resulted in long wait times, dissatisfaction and discomfort, and in some cases breach of confidentiality. Improvements in the physical facilities of health services and ensuring accessibility are related to patient and staff satisfaction28. In addition, our findings reinforce the need to provide staff training across all sectors in health facilities focusing on the assurance of confidentiality of people living with HIV29.
The availability of ART in the municipality confirms the success of the policy of free universal access on the SUS12. Staff discretion and ease of collection of antiretroviral drugs contributed to treatment adherence. Extending dispensing intervals was a successful strategy for maintaining adherence to ART during the pandemic. In contrast, shortages of other drugs, including those used to treat the side effects of long term ART, meant patients had to buy or stop taking medications for a diverse range of health conditions30. Although one alternative was the popular pharmacy, the participants reported red tape for accessing medications, as shown by other studies31.
Access to health promotion and disease prevention actions was concentrated in polyclinics, adopting an individualized approach centered on infectologists. The guidance provided and communication with these professionals were appreciated by the participants, making an important contribution to affiliation and treatment adherence32. However, the interviewees did not report actions developed by multiprofessional teams within a broader health promotion perspective addressing prevention for partners and promoting quality of life, treatment adherence, reducing harm from alcohol and other drug use, and physical activity33. Our findings also highlight the importance of educational activities that address both the preventive and psychosocial aspects of condom use, corroborating other studies23.
Access to other health professionals was concentrated in polyclinics, through internal referrals or direct scheduling, although with restrictions. It is important to highlight the generally poor access to oral health services, which are essential for the prevention and treatment of HIV-associated periodontitis, such as acute necrotizing ulcerative gingivitis, associated with low immunity34. Edentulism has a negative impact on general health and quality of life35, which, when added to stigma, heightens the level of vulnerability experienced by people living with HIV. Poor access to social assistance limits awareness of social rights and benefits, such as free transport, which helps break down financial barriers to access to health services36. In addition, participants did not receive interprofessional care, which entails co-responsibility and matrix support integrated across different areas of knowledge in the health care network37.
One of the limitations of the study is the fact that participants were selected in polyclinics, meaning they already had access to HIV care, which does not necessarily reflect the real situation among patients in general. In addition, the perspective of other actors such as health professionals was not considered.
FINAL CONSIDERATIONS
Despite risk stratification, HIV care remains centralized in polyclinics in the state of Rio. However, HIV patients in these services also receive support for both medical and relational health demands, and the participants’ experiences of longitudinal care, a supportive and welcoming environment and respect shown by health professionals should be valued. It is also important to recognize the care coordination role played by infectologists, which is a difficult role to perform in any point of the health care network. All these aspects, together with the availability of biomedical resources (ART, HIV/AIDS check-up tests), were important factors contributing to adherence to treatment. However, the participants’ experiences reveal important areas for improvement, including clinic infrastructure and facilities and the management of testing and results delivery.
The provision of comprehensive integrated care remains a challenge. Patients who do not regularly use primary care services miss out on the opportunity to access family-oriented community health care and treatment for other health conditions, exacerbating vulnerability. Analyses based on the experiences of people living with HIV with the utilization of health services can make an important contribution to developing a patient-based model of shared care provided across all levels of care, which in turn requires changes in the modus operandi of primary and specialized care services.
COLLABORATORS
RFL Silvério was responsible for study conception, data collection, analysis and interpretation, and drafting this manuscript. AG Silva Júnior participated in data analysis and interpretation and in drafting this manuscript. DO Silva participated in data analysis and interpretation. PF Almeida was responsible for study conception, data analysis and interpretation, drafting the manuscript, and study coordination.
FUNDING
The study “Coordination and continuity of care across primary and specialized services in the municipality of Niterói” was funded by the Applied Project Development Program (PDPA), a partnership between Niterói City Council and Fluminense Federal University. PF Almeida received a scholarship from the National Council for Scientific and Technological Development (CNPq).

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