World AIDS Day 2019: Emerging gaps and challenges in delivering care to people living with HIV in Bihar, India
Ed Monk is an RSTMH member and physician from the UK working with MSF in Bihar, India.
World AIDS Day 2019
In the 35 years since its discovery there have been truly remarkable advances in the opportunities for care of people living with HIV. A life of normality is now the goal in many settings, with treatment often consisting of a single pill once a day that is highly effective at controlling viral replication, to the extent that individuals can anticipate to lead a normal healthy life once virally suppressed with zero transmissibility to partners.
While a focus on high-burden settings can offer the greatest opportunity for absolute health impact, it is important to acknowledge that as our accomplishments build, new populations will continue to emerge as neglected by our efforts, relatively speaking.
One example is Bihar, India, where MSF has been working since 2007, originally focusing on the treatment of visceral leishmaniasis/HIV co-infection. Through this work, we came to realise that, as a population, people living with advanced HIV in Bihar were particularly vulnerable.
MSF in Bihar, India
In February 2019 MSF opened an inpatient facility in Patna, Bihar’s capital, dedicated to provide comprehensive, holistic care to patients living with advanced HIV. Three central themes are at the focus of this care: 1) access to care, 2) mortality rate reduction through delivery of quality care and 3) patient dignity.
Although the national HIV prevalence of India is low at an estimated 0.22% (2017), it has the third largest absolute number of people living with HIV, after South Africa and Nigeria, at 2.1 million. Bihar, one of India’s largest but also least economically developed states, is home to an estimated 115,000 people living with HIV and is one of the few states that has not seen a decrease in deaths attributable to advanced HIV over the last 15 years, increasing by 31%.
The population of Bihar has a relatively poor access to healthcare compared to many states in the country and by living with a chronic condition requiring life-long medication in such a setting, complicated by community and healthcare-based stigma, it is no wonder that many patients referred to our services report significant physical and emotional suffering.
Stigma, discrimination and access to healthcare
The people we see in our 36 bed unit frequently recount a tortuous journey with difficulty accessing regular inpatient services, reporting that healthcare professionals have denied them access to care through fear of the negative impact that caring for a patient with HIV will have upon their practice and/or health.
This behaviour is appreciable in everyday practice. I have known patients to be refused emergency department assessment, publicly humiliated by being shouted out of a clinic (by medical staff) and denied access to life-saving surgery. Sadly, each of these events are of no surprise to our patients and national staff, despite there being a law against the denial of treatment to patients living with HIV.
This compound stigma from healthcare professionals is rarely challenged, leading to a discrimination that is present across all levels of care in Bihar. As a result, patients frequently present to ART (anti-retroviral therapy) centres in times of medical crisis, despite there rarely being inpatient capacity. Our unit provides a place from which to deliver essential care in such circumstances.
Access to diagnostics and treatment
The provision of care specific to advanced HIV is governed by national and international organisations and working groups, determining the availability and supply of diagnostics and medications. Although many advances have been made in international policy development, including drug supply advocacy and assurance, it takes time for these to filter down to national, regional and community levels, creating gaps in healthcare delivery with each stage of delay.
In line with the global trend, a large proportion of the patients we see (79.6%) are ART experienced, often requiring a switch to second-line therapy. Availability of integrase inhibitors is limited, however, despite dolutegravir being recommended as the preferred option for all populations living with HIV by the WHO, and the second-line agents to which we do have access (mostly protease inhibitors) frequently have stock-outs at local ART centres.
Many of the diagnostics recommended for the screening and diagnosis of opportunistic infections in advanced HIV disease (WHO) are not readily available from national services. Although we perform many of these at our unit and provide treatment accordingly, the quality assurance and availability of many of the medications we require day-to-day are poor, particularly those for secondary prophylaxis to prevent disease relapse/recurrence (for example: cotrimoxazole, fluconazole and valganciclovir).
The burden of bacterial infections in advanced HIV contributes greatly to inpatient mortality. Given that India has been described as having the highest drug resistance index for WHO-defined priority organisms and the majority of our patients present with opportunistic infections requiring treatment with antimicrobials, stewardship is a strong focus of ours.
Of great concern, our unit has found that 86% of all positive isolates show resistance patterns of multidrug resistance or higher (32.4% of which are multidrug-resistant, 62.2% extensively drug-resistant and 5.4% pan drug-resistant).
A multidisciplinary antimicrobial stewardship programme within our unit, comprising targeted and timely therapy, infection prevention control and stewardship audit, has contributed to a 16-fold reduction in antibiotic spending whilst not compromising patient care – indeed mortality rates improved from 37% in February (similar to that of other advanced HIV projects) to a stable 10-15%.
Palliative care, mental health and advanced HIV infection
In advanced HIV disease, quality of life can be particularly impacted upon and symptom alleviation is an essential early focus of the care we deliver. All patients receive supportive care assessments on admission so that we can tailor the care we provide on an individual basis, addressing palliative care needs if they arise.
Although the majority of our patients have a disease trajectory far more optimistic than that of patients receiving palliative care in most other settings, they are still at their most susceptible to further illness at discharge, often with a high complexity of care needs, and remain physiologically and psychologically vulnerable.
Mental health support is also a major focus of our unit, echoing the palliative care ethos of the assessment and treatment of physical, psychosocial and spiritual needs alongside compassionately delivered medical care. Almost all of the patients we see are accompanied by a story of challenging circumstances, with intricate family dynamics that have been tested by the unfamiliarity and confusion surrounding a diagnosis of HIV in rural India.
Most of our patients on admission show signs of low-mood or depression, with complex emotional factors that require counselling and family unit support, delivered by a team of psychologists and counsellors both at the ward-level and as an outreach health promotion service.
Closing the healthcare gap
There is still a long way to go, but gradually we are seeing a change in how HIV is perceived within the hospital services outside of our unit, building reliable referral pathways throughout the city and advocating for universal access to quality healthcare without discrimination.
Our holistic care model appears to be well received, building patient autonomy and confidence despite difficult circumstances that are often laden with uncertainty, allowing us to introduce a little more normality into our patients’ day-to-day while delivering holistic, patient-centred care.
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