REPORT OF COMMUNITY CONSULTATION AMONG YOUNG WOMEN LIVING WITH HIV CURRENTLY ACCESSING PMTCT SERVICES IN BENUE, EDO, AKWA-IBOM AND LAGOS STATES.
By
Oyelakin Taiwo
  1. Context

HIV continues to pose a serious health risk for pregnant women and their children in high prevalence settings. Vertical transmission, occurring during pregnancy, labour, delivery or breastfeeding, remains the main mode of HIV infection in children. An estimated 390 000 children globally acquired HIV from their mothers in 2010 with over 90% of these new infections occurring in sub-Saharan Africa While the majority of infants of HIV-infected mothers do not themselves become HIV-infected, they are nonetheless at risk of increased mortality and morbidity and vulnerable to orphanhood. However, the use of antiretroviral drugs during and after pregnancy is a proven intervention to virtually eliminate the risk of HIV transmission to infants, as evidenced in high-income countries where new childhood HIV infections are now almost non-existent.

Nigeria a low-income country of 150 million people is one of the countries with the highest number of HIV-infected pregnant women; between 57,000 and 76,000 pregnant women (mid-point estimate 66,500) were HIV-infected and required antiretroviral prophylaxis for prevention of mother-to-child transmission (PMTCT) in 2010[2]. There are approximately 663,000 annual births and a high mortality ratio (510/100,000 births); approximately 42% of maternal deaths are attributable to HIV

Nigeria has experienced successful national efforts in reducing disparities in safe motherhood with reductions in maternal mortality of approximately 50% in the last decade. More than 90% of pregnant women attend antenatal clinics at least once during their pregnancyalthough the majority first attends during the second or third trimester. The Government of Nigeria is implementing a decentralized approach to HIV prevention, care and treatment in order to reach the 85% of Nigeria’s population that live in rural areas. Nigeria has also had notable success in rapidly expanding ART (antiretroviral treatment) coverage in the general population; the number of ART sites across the country grew from the 11 experimental PMTCT sites in 2003 had increased to 640 by December 2008,almost half of which are community-based health centres, and an estimated 49–57% of HIV-infected adults eligible by clinical or immunologic criteria were receiving ART by the end of 2010. By contrast, the coverage of antiretroviral prophylaxis for HIV-infected pregnant women was still very low in 2010, within the range of 23–31%. Nigeria healthcare system remains overstretched, with one doctor for every 49 000 people and one nurse for every 1 800 peoplewhich is ten times lower than the World Health Organization (WHO) recommended minimum standard.

  1. Rationale

The revised 2010 WHO guidelines for prevention of mother-to-child transmission of HIV recommend lifelong ART for women with CD4 counts at or lower than 350 cells/. The guidelines recommend two prophylaxis regimens for women who are not clinically or immunologically eligible for ART. Option A consists of antepartum zidovudine (AZT) from 14 weeks of pregnancy, single-dose nevirapine (sd-NVP) at the onset of labour and a dual-drug regimen of zidovudine (AZT) and lamivudine (3TC) until one week after delivery. The infant receives daily oral nevirapine from birth until all breastfeeding has ceased. In Option B, mothers receive triple-drug antiretroviral prophylaxis starting from 14 weeks of pregnancy until all exposure to breast milk has ended. Daily oral nevirapine to the infant is provided from birth until six weeks of age. Determination of which women are eligible for lifelong ART and which women receive prophylaxis is primarily through CD4 screening.

The Ministry of Health in Nigeria isproposing plans to begin implementing a new approach termed Option B+ in which all pregnant women who test HIV positive are placed on ART for life, from 14 weeks gestation or first antenatal visit, and regardless of their CD4 count or clinical stage. This simplified approach would facilitate the achievement of not only the Global Plan target of elimination of new paediatric HIV infections by 2015, but also the target of universal access to HIV treatment for mothers in a setting where it is difficult to effectively distinguish between those mothers eligible for treatment and those needing prophylaxis. While CD4 testing should be available to guide the initiation of ART, Nigeria, like many other low-income countries, suffers major constraints in the expansion of laboratory capacity, and specifically regarding access to CD4 testing. The simplification of drug regimen options may also help to improve adherence to therapy and reduce the many bottlenecks within the cascade of PMTCT interventions as countries adopt the Treatment 2.0 framework of simplified HIV treatment. Implementing Option B+ may be a more effective PMTCT strategy, as it can help overcome some of the individual, organizational and societal barriers associated with achieving high coverage levels of prophylaxis and treatment, and will ensure that most HIV-infected pregnant women are placed on treatment immediately following diagnosis leading to further reduction of MTCT.

  1. Objectives
  1. To open a dialogue between women living with HIV and care providers around perceived and real barriers to high quality, rights-based care
  2. To explore what impact, if any, decentralization of services has on stigma and discrimination and women’s access, adherence and retention in care
  3. To develop recommendations and submit to members of the National Technical working group on Prevention and ensure through advocacy that access to ARV’s for pregnant women and people in discordant relationship is increased.
  4. To open a dialogue between women living with HIV, care providers, service providers and State Agency for the control of AIDS in Benue, Edo, Akwa-Ibom and Lagos state respectively.
  1. Consultation Methodology

The fellow choose the project states on the premise of high prevalence …………………………using community consultation. Consultation are an opportunitytoclarifysharedunderstanding or perceptions held by a group can also create ownership and engagement among participants because they are given an opportunity to express their views and be heard by others. However, because of the smaller size, consultations are limited in their ability to produce results that are can be generalized to the larger population.

Sampling and Selection of Participants

In planning the consultation, the fellow employed a judgment selectionmethod; participants were chosen with the purpose of representing specific inclusion criteria:

  1. Young women living with HIV currently attending PMTCT service in a health facility (aged18-30)
  2. Women living with HIV from rural communities who have gone through a PMTCT service
  3. Women living with HIV in a discordant relationship

Transportation reimbursement was provided to all participants and light refreshments were served during each consultation.

Languages Used for Data Collection

The participants’ preferred languages were used in the consultation

In Benue, Lagos and Edo the consultation took place largely in English, as every participant felt comfortable speaking English. Occasionally, participants felt more comfortable expressing themselves in pidgin or local language

  1. Identified Challenges

Weak Health System;. The Nigerian health system is in comatose, substandard technology and a lack of infrastructural support, including electricity, water and diagnostic laboratories resulting in misdiagnosis. Medical record keeping is rudimentary and diseases surveillance is very poor. Delivery of health care becomes a personal affair and dependent on ability to pay for basic laboratory and physician services. These have exacerbated the disease burden (FMoH, 2010). Health care financing is worse hit especially where health care faces serious problem of acceptability with out-of-pocket expenditure accounting for over 70% of total private health expenditure is enough to dent the little progress of the health system made. Hence, the increasing out-of-pocket expenditure due to high disease burden on most poverty-stricken households has kept them in the vicious cycle of the poverty trap. Risk pooling in the form of private/commercial health insurance is often lopsided while the much touted social insurance is limited to those in Federal government service (HERFON, 2010) The reasons for a dysfunctional health system include: gross in adequate infrastructural support, electricity, potable water and diagnostic laboratories, very low per capita health spending, high out-of-pocket expenditure by PLWHAs, and a total absence of a community-based integrated system for disease prevention, surveillance and treatment amongst others.

Poor Management Information Systems;. Majority of the participants in the four project states are ignorant or unaware of available services and their rights regarding health service delivery mainly because of the absence of a bill of rights for consumers (claim holders) and providers (duty bearers). The role of the family in preventing and managing illness is also underestimated or inadequately supported by government programmes. Basic life-saving commodities are in short supply in most health systems. This is, in part, a result of resource shortages, but, there are still problems even when substantial increase in funding are available, as in the case of Global Fund to fight AIDS, Tuberculosis and Malaria and building effective and accountable national procurement and drug management systems is an increasing prominent component of the health system action agenda. The provision of health services relies on the availability of regular supplies of drugs and equipment, as well as appropriate infrastructure at the facility level. Facilities without safe water and electricity, with nonfunctioning equipment, and inadequate deliveries of drugs, diagnostic and other supplies are all too common in many states of the country.

Cost of Treatment;. PMTCT programmes in Nigeria are largely donor driven with insufficient government supervision. The national HIV/AIDS response in Nigeria has been constrained by a lack of capacity, essentially at the state level. Efforts need to be made to urgently train a critical mass of health workers. Challenges to scaling up treatment include the high cost, weak processes for procurement and supply chain management, the low availability of and delays in the delivery of antiretroviral drugs and limited access to entry-point services. High user charges for laboratory tests constitute another barrier to treatment access. There is inadequate information regarding activities being implemented by the private sector. Blood safety, universal precautions and injection safety need to be improved, especially in the private and unregulated sector. The level of community involvement remains low, coordination needs to be strengthened among the many stakeholders involved in supporting and delivering HIV/AIDS services. Monitoring and evaluation capacity at the federal and state levels needs to be strengthened, focusing on patient tracking, programme implementation and quality control.

-Management of drugs and other commodities

Coordination of providers; lack of infrastructure, lack of human resources, financial constraints, programmatic problems, weak leadership and management at national level, poor cooperation between management structures, geographical barriers, lack of awareness and low uptake of counseling and/or testing, stigmatization and discrimination by health workers and the community, lack of coordination and limited access to services

Stigma and Discrimination - Stigma as the reason why individual patients, because of the fear of rejection, discrimination, violence or unemployment, avoid ART clinics or do not adhere to their medication, even when they know the benefits of treatment. Such patients often prefer discrete visits from home-based care volunteers or traditional healers that can be visited at night.

NationalHealth Institution LevelCommunity LevelIndividual Level

Level

  1. Recommendation

Identified areas for collaboration on strengthening integration and coordination of

Community service provision and the health systems

Increased links are needed for women who access treatment to receive counseling concerning desired children and family planning.

Strengthen the interface between facility based care and community systems for HIV

treatment, linking to on-going efforts including efforts to develop synergies around

community health workers and frontline health workers

Build sustainability in responses to HIV through better integration between government and non-state health-related programmes, facilities and providers

New and innovative ideas and approaches identified for community-led provision of treatment services that are replicable and could be scaled up to reach those currently unreached but in need of HIV treatment