Renán E. Orellana, Co-Editor-in-Chief
Hiring a private investigator to be the cornerstone of a behavioral intervention to improve adherence to antiretroviral therapy seems to be an irrational, erratic means of health promotion. In many respects, such an approach would be doomed for failure, but it may be something to consider in the development of future strategies that target the psychosocial determinants of behavior in impoverished communities. There is an anecdotal basis for this idea that the role of a public health worker should take on certain idiosyncrasies of a private detective – a success story of accessibility and reachability in the context of an African health system, if you will.
In the summer of 2013, I worked with DREAM (Drug Resource Enhancement against AIDS and Malnutrition), an AIDS therapy program that fights the AIDS epidemic in Africa using a strategy of both prevention and pharmacological treatment in the care of the holistic well-being of seropositive HIV patients. The most important and revolutionary component of the DREAM model, however, is that of the centrality of patients themselves – over a million of whom the DREAM program has directly or indirectly assisted since 2002 (Fig.1&2). The key to success has been the principle of the “human relationship,” a concept that, in my opinion, is excluded from the lexicon of the generalized field of public health, both in research and in practice.
The scenario is this: two bicycle taxis are riding down a dirt path that cuts across fields of tall grasses and sparsely scattered trees in the heart of rural Malawi. One bicycle taxi is carrying me, an mzungu – the autochthonous word for “white person” in Chichewa and other Bantu languages. The other is carrying a poised, stunning Malawian woman wearing a black scarf, a white T-shirt with the “I DREAM” logo, and an African chitenje wrapped around her waist.
At the crux of the DREAM model are the DREAM “Activists”. One of the most important components of the treatment process involves the active participation of hundreds of local men and women who provide the support and counseling that medical personnel cannot offer. They themselves are receiving treatment from the DREAM program, so by virtue of their own experience of recovery as DREAM patients, they reassure other patients in the program that AIDS is no longer a death sentence. They become vehicles of hope and resilience in an effort to eradicate “afro-pessimism” – the fatalistic belief that nothing can be done to alleviate the suffering and poverty of African communities, that all foreign aid is futile.
Community Care and Home Care services (CCHC) are the reason that compliance rates are very high for DREAM, with adherence to antiretroviral therapy being at around 94 percent [i]. The home care service is spearheaded by the Activists of the movement “I DREAM,” who are employed by DREAM to become extensions of the familiar immobile health system of clinics and hospitals so that care can reach patients wherever they are – be it their homes, the streets, orphanages or hospitals. And thus, HIV positive men and women become part of the public health workforce as socio-health workers, cultural intermediaries, counselors, peer health educators, and even as “private detectives.”
On these bicycles taxis, we were able to quickly traverse a route that covers the same distance that the patient we are visiting must travel by foot. This rudimentary system of unpaved roads connects remote villages to the nearest township, and villagers must walk kilometers on end to reach hospitals, clinics, pharmacies, schoolhouses, and markets.
Upon arriving at the village, a swarm of children greeted us, awestruck by the fact that a “white person” had come to visit their remote corner of the world. The Activist asked the children in Chichewa if they knew where we could find our friend (i.e., the patient), but we were informed that she was feeling unwell earlier and was nowhere to be found. Apparently, she had departed from the village before daybreak to seek medical care at an unknown location several kilometers away, leaving her five-year-old daughter behind with the grandmother, who was also unable to identify her whereabouts. And so what began as a routine follow-up home care visit became an attempt to answer some urgent questions. Where had she gone for treatment? A near-by health center? The municipal hospital? How severe is her health condition at this point?
Weeks before, I had begun to establish a close relationship with this patient and her five-year-old daughter, both of whom were HIV positive patients in the DREAM program. I first met her when she had been informed of a presumptive diagnosis of cancer. Though the neoplasm was later discovered to be, in reality, tuberculosis mimicking cancer, this patient was at a critical stage of AIDS and had severe acute malnutrition with clinical signs of severe wasting. Yet, her subsequent recovery cannot be attributed solely to the work of healthcare providers, therapeutic food supplements, TB medications, and ARVs. In many ways, the triumph of the DREAM program is firmly grounded on the steadfast support system of the Activists, a component of the model solidified by the “home care” service that secures adherence and optimal care for all DREAM patients. The Activist movement acts as a catalyst for the eradication of stigma and helps in the reintegration of patients into community life. Activists develop strong bonds with patients and their communities, harvesting sincere relationships of trust and friendship.
All afternoon, the Activist and I scoured the municipality looking for our friend. We first visited the women’s TB ward and outpatient services unit of the municipal hospital, but found no record that our patient had even visited the hospital that day. And to make the situation even more worrisome, it was suggested that she may have been admitted for inpatient hospital care in a city 45 minutes away, though there was no way to confirm her transfer to this particular medical facility. We searched the neighboring outpatient clinics and regional health centers to no avail before stopping by the local UNICEF medication distribution center. To our relief, we were informed that her name was documented in the logbook seeing that she had arrived earlier to collect her TB medications. Apparently, she had received treatment for her pain and other complications and had just left for her village in better condition not long before.
The principle of the “human relationship” is slowly emerging as a veritable concept in public health practice and profession. As evidence-based research on the psychosocial factors that shape the human condition begins to bridge the schism between intangible concepts and the primarily empirically-driven field of public health, an increasing weight is being placed on unorthodox measures of human social interaction. To better understand how different sociocultural landscapes influence population-based outcomes in human behavior, cognition and health, it is important to gauge the impact of the varying levels of affinity between two or more people or groups of people (i.e., concrete assessments of such abstract concepts as “friendship” and “loneliness”).
In order to assess such obscure indicators, however, we need a better understanding of how the socioeconomic environment influences the sociocultural landscape of a community. In this particular article, I want to mention the emergent concept that the HIV/AIDS epidemic in Sub-Saharan African is the outcome of an endemic problem of deeply-rooted structural poverty.
Although data suggests that health and ill-health follow a social gradient in which a lower socioeconomic position is aligned with poorer health,[ii] [iii] to say that poverty is the driving force behind the AIDS epidemic in Africa is a little unsettling. This idea is founded on empirical evidence that links poverty to population measures of morbidity, mortality and quality of life. For decades, socioeconomic factors and marginalization have undeniably perpetuated the spread of the HIV/AIDS epidemic in Sub-Saharan Africa and around the world, but it is important to conceptualize the link between the AIDS epidemic and poverty in limited resource countries in a different way.
This piece focuses primarily on an intervention that introduces novel ways of securing quality healthcare services by addressing sociocultural and socioeconomic dynamics in marginalized populations. In impoverished communities, socioeconomic factors pose huge barriers to the accessibility of resources and basic human needs like education, clean water, adequate sanitation and proper nutrition. But beyond these tangible, concrete factors that further exacerbate and perpetuate the HIV epidemic, it is important to consider how human behavior relates to both the built environment and the psychosocial elements that individuals face in their communities. How can we expect to ensure compliance to treatment regimens if we neglect the social context and the psychological state of patients? This can include anything from an HIV positive youth having to cope with stigma at school, to an elderly patient being physically incapable of traveling to a health center for check-ups, medications or routine blood work.
As a final example, consider how young people with congenitally acquired HIV infection are subjected to the same social-emotional development as their HIV-negative peers. Yet, despite coming up against the same emotional volatility and developmental hurdles as their seronegative counterparts, the adolescence of HIV-positive teens is often marked by an internal struggle in adherence to the antiretroviral therapy to which they have been dependent on since birth and must continue to take for the rest of their adult lives. In spite of this, strong social-support systems of peers make it possible to effectively breach the social barriers that deter perinatally HIV-infected adolescents from routinely taking their medications, the result of which can be disastrous in the form of HIV drug resistance.
DREAM envisions a new Africa in which seropositive mothers have access to tri-therapy so that their children can be born healthy and without HIV, in which entire villages affected by AIDS are no longer communities of orphans, in which advanced diagnostic-therapeutic practices like virological monitoring are commonplace in clinics and hospitals alongside conventional clinical monitoring, and in which stigma, discriminatory behavior, and humiliation for one’s health condition are nonexistent. The experience of DREAM in Africa has led to a realization that the most invaluable response to the AIDS pandemic is not necessarily one of drugs and condoms. As we continue to foster innovation and ingenuity in research and practice, we must consider the idea that the most successful treatment and prevention strategies rely greatly on human relationships. Without this human element at the core of public health, poverty reduction efforts will be in vain and the dream of an AIDS-free world will be unattainable.