University of Groningen Exploring strategies to optimize pharmacotherapy with antiretrovirals in Papuans living with HIV Sianturi, Elfride

University of Groningen

Exploring strategies to optimize pharmacotherapy with antiretrovirals in Papuans living with

HIV

Sianturi, Elfride

10.33612/diss.116883036

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Publication date: 2020

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Sianturi, E. (2020). Exploring strategies to optimize pharmacotherapy with antiretrovirals in Papuans living with HIV. Rijksuniversiteit Groningen. https://doi.org/10.33612/diss.116883036

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CHAPTER 1

GENERAL INTRODUCTION AND THESIS

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HIV IN INDONESIA AND PAPUA

The first case of HIV patients was reported in 1987 [1]. The latest reports showed that more than 600.000 out of 254 million Indonesians live with HIV [2], with a prevalence ranging between 0.1% and 2% across the country. The prevalence was higher than earlier predictions [3], but lower than in some other countries in the Asia-Pacific region such as Thailand and India [4]. Within Indonesia, the highest prevalence has been reported for the provinces Papua and West Papua. There the HIV prevalence was estimated to be as high as 2.3% among the general population aged 15-49 years [2],[5]. Furthermore, recent figures suggest that death rates as well as HIV incidence in Indonesia increase which is in contrast to other areas in this region which showed a decline [6]. In Indonesia, initially, injection drug use was reported to be the main mode of transmission. In recent years, unprotected sexual intercourse is thought to be the primary mode of transmission of HIV [2]. The Indonesian government created the National AIDS Committee (NAC) which is responsible to coordinate the local, national and international work on HIV/AIDS prevention and treatment [1].

ANTIRETROVIRAL TREATMENT

Zidovudine and didanosine used as monotherapy, were the first antiretroviral agents which improved survival of HIV patients [7]. Since combination treatment with three antiretrovirals became available, mortality and transmission of HIV has been reduced successfully [8]. Antiretroviral therapy (ART) has not been available in Indonesia between 1987-2004 [9]. With support of international donors, the Indonesian government started to provide ART free of charge to patients in 2004, initially in a limited area. As Papua was not included in this area, the Papuan local government used their own budget to provide ART free of charge from 2004 onwards. Provision of ART was part of a program to scale up prevention of HIV infections, and treatment and support of HIV patients with aim to eliminate HIV transmission.

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More than 50% of the total expenditure of this program focused on treatment [2],[9]. Currently, ART is provided free of charge throughout Indonesia, but until now, most patients have to pay for the physician appointment, for the administration as well as for laboratory monitoring out of their pocket [1].

The current national guideline recommends healthcare providers to start HIV patients on ART, once they are diagnosed irrespective of their CD4 count [10]. Despite this guideline, the

coverage with ART is still low. It is estimated that only 10% of patients living with HIV (PLHIV) receive ART [11]. Furthermore, only a limited number of different ART regimens that are on the market, are available in Indonesia [9],[12]. The first line regimen that is recommended to be used in international guidelines, is also widely used in Indonesia. However, the regimens which are recommended to be used as second line or third line of ART are not yet available in Indonesia. Furthermore, there is a lack of capacity for laboratory monitoring of patients, especially outside the big cities [9].

ADHERENCE TO ART

Patients have to take their ART to achieve successful treatment, but adherence to ART remains a problem [13],[14]. Studies about HIV adherence have been conducted in many areas [15]. Barriers to being adherent among HIV patients have been found to be concerns about medication and health, stigma, family responsibilities, and problems with schedule and routine [16]. Those barriers varied by stage of the disease, region and age [17]–[21]. Studies from Asia and Africa also show that problems of the health system are contributing to a lack of adherence [22]–[24]. Research on adherence to ART in Indonesia is limited. The level of

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adherence among HIV patients in urban areas in Indonesia was found to be lower [25] than in other developing countries [23].

Patients require help to adhere to their medication regimen. Multidisciplinary care combining care from health providers, social community and including family support has been shown to be important [15]. Such help needs to take into account beliefs about medicines, illness concepts, religious values [26],[27] and stigma [28]. Healthcare providers including pharmacists may optimize adherence by some interventions, in particular addressing the problem of adverse effects [29]–[31]. However, so far, pharmacists seemed to have a very limited role in developing countries [32],[33], while pharmacists in developed countries have implemented a diversity of strategies in HIV management [34]–[36]. To implement services such as pharmacists counselling HIV patients in developing countries faced barriers from patients and health care providers [37],[38].

HIV RELATED STIGMA

The sociologist Erving Goffman introduced the term stigma which originally referred to signs which marked slaves or criminals in ancient Greek [39]. Stigma has been described as labeling, stereotyping, separating, and discriminating people [40]. The recognition of difference and devaluation which is embedded in the social context are components of most definitions of stigma [41]. The existence of HIV-related stigma is widely recognized. Being HIV positive is associated with promiscuity, commercial sex, and homosexuality, which are considered deviations from social values. Studies show that stigma can be produced through many ways, but the manifestation of being stigmatized is remarkably similar [42]. Stigma

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negatively influences health outcomes in HIV patients, for example it has been shown that stigma forms a barrier to access healthcare [43]. Different frameworks have been developed to conceptualize and measure HIV-related stigma [44], but only few studies have been conducted in Indonesia in this area [45],[46]. Developing interventions to reduce stigma should combine the theory and local evidence [47].

HIV IN PAPUA

Papua is the most Eastern island of Indonesia with more than 1.2 million inhabitants consisting of indigenous as well as migrants, predominantly from other regions of Indonesia. About half of the Papua island belongs to Indonesia since 1963 [48]. Nowadays it consists of two provinces, namely West Papua and Papua Province. The other half of the island is Papua New Guinea. Melanesians are the predominant indigenous ethnicity living on Papua [49]. Different from other areas in Indonesia, more than 80% of Melanesians belong to Christianity. Papua and West Papua Province have a special autonomy status within Indonesia. This special autonomy status (OTSUS= Otonomi Khusus) gave some privileges to the inhabitants regarding health care, education and infrastructure [50].

Despite economic growth in the provinces Papua and West Papua, the economic situation of many Papuans remains a problem, especially among the indigenous people. The topography of the island is diverse with vast areas of remote highlands. Multiple ethnic subgroups among Papuans have a rich diversity in cultural traditions. Amongst others, ethnic groups hold local concepts about illness and medication [50].

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As has been already highlighted, the prevalence of HIV on the island is estimated to be the highest in Indonesia, reported to be 24 times higher than the national rate [2]. Even though the OTSUS has been held almost 20 years [51], there are problems with infrastructure including health care and transportation. Furthermore, there is a lack of healthcare providers working in peripheral health facilities. Previously HIV care could be merely provided by referral hospitals in the two provinces including dispensing of ART. Recently, the Indonesian government has attempted to strengthen community health facilities in remote areas. Therefore, nowadays a number of community health centers in Papua provide basic diagnostic procedures and monitoring of HIV patients as well as dispense ART [52]. Despite such changes, as in other areas diagnosing HIV early and obtaining ART remains a problem in Papua [53],[54].

KNOWLEDGE GAPS

In summary, despite changes in health care, HIV is still a problem in Indonesia, especially in the two Papuan provinces. To improve this, attempts have been made in providing ART free of charge and decentralizing HIV care to community health centers. Little is known whether these measures have helped HIV patients in this area, in particular little is known about the level of adherence to ART and factors associated with adherence. Furthermore, the role of pharmacists in HIV care have not been explored.

THESIS AIM

In this thesis, the experiences of PLHIV taking ART in Indonesia are explored. In particular, we investigated factors associated with regularly attending counselling when receiving ART, the level of adherence to ART and the factors associated with adherence and the level of

13

health literacy. Finally, we also investigated the role of the pharmacist in HIV care in Indonesia.

Outline of this thesis

Chapter 2 identifies the barriers and facilitators of attending HIV counselling in an urban area of Indonesia.

Chapter 3 determines the level of adherence and investigates whether stigma, beliefs about medicines, sociodemographic characteristics including ethnicity are associated with adherence in People living with HIV (PLHIV) in Papua, Indonesia. This chapter also examines the level of health literacy among PLHIV in Indonesia and assesses associations between characteristics of medication, beliefs about medicines, stigma, and health literacy.

Chapter 4 explores experiences among Papuans living with HIV in obtaining ART and in coping to adhere to treatment in a qualitative study interviewing patients and health care providers.

Chapter 5 explores the pharmacist’s role in HIV care by investigating the level of HIV treatment knowledge, empathy, and HIV stigma of pharmacy students and pharmacists working with People living with HIV (PLHIV) in Indonesia.

Chapter 6 summarizes and discusses the main findings of the thesis as well as the implications for clinical practice.

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