Topic: Positive, Health, Dignity and Prevention

UNFINISHED BUSINESS

The Global Network of People Living with HIV (GNP+), The International Community of Women Living with HIV (ICW), The Global Network of Young People Living with HIV (Y+ Global), The HIV Justice Network (HJN), Prevention Access Campaign (PAC), AIDS Action Europe (AAE), Australasian Society for HIV, Viral Hepatitis and Sexual Health Medicine (ASHM Health), The European AIDS Treatment Group (EATG), and Afrocab Treatment Access Partnership (Afrocab) came together to host the Living 2024 conference on 20–21 July 2024 as an official pre-conference to the International AIDS Society’s AIDS 2024 conference in Munich, Germany.

Living 2024 partners shared a common interest in achieving the conference outcomes for the benefit of communities of people living with HIV. GNP+ led the conference and partnership coordination; however, all partners contributed their expertise and resources to support the organization of the conference.

A series of materials that aims to improve the understanding of Positive Health, Dignity and Prevention. These booklets were written to support organisations to promote the meaningful engagement of people living with HIV in decisions that affect our lives.

Positive Health, Dignity and Prevention: What Does it Mean for Networks of People Living with HIV?

Positive Health, Dignity and Prevention: What Does It Mean for Me? 

A treatment literacy guide for pregnant women and mothers living with HIV

Women living with HIV from eight countries have shared their expertise to shape the content and design of the guide and it was formulated in direct response to a call from communities for up-to-date, evidence-based resources.

Positive Health, Dignity and Prevention for Women and their Babies: A treatment literacy guide for pregnant women and mothers living with HIV is intended for use by networks of women living with HIV, women’s groups, peer educators and others wishing to provide information and guidance to support women living with HIV through the decisions they will need to make before, during and after their pregnancy.

The guide has 12 modules covering issues ranging from human rights to treatment adherence and nutrition. It is made up of three separate tools:

• facilitator’s manual
• illustrated flipchart
• accessible poster

The facilitator’s manual and flipchart are intended to be used together by leaders of support groups, peer educators or lay counselors to facilitate small groups or community sessions with women living with HIV. The poster can be displayed anywhere where it will be seen by women living with HIV and their families, such as: clinic rooms, church halls, waiting rooms and community education spaces.

This guide was developed by members of the Community Engagement Working Group (CEWG) of the Inter-Agency Task Team (IATT) for Prevention and Treatment of HIV Infection in Pregnant Women, Mother and Children, a group committed to strengthening global, regional and national partnerships and programs that address the survival of pregnant women, mothers and children living with HIV.

Findings and recommendations from studies led by people living with HIV

This report presents the findings of the PHDP survey in Malawi. It describes the experiences of PLHIV in the context of the national scale up of HIV testing, care and treatment with highlights of the important linkages between prevention, treatment, care, support and human rights. This can be used to inform evidence based PHDP programming. The findings of the study were analyzed in relation to the following PHDP components: empowerment, gender equality, health promotion and access, human rights, prevention of new infections, sexual and reproductive health and rights, and social and economic support.

The research was carried out by the Malawi Network of People Living with HIV (MANET+), with support from the Global Network of People Living with HIV (GNP+), conducted a cross-sectional survey among PLHIV to document their experiences in relation to Positive Health, Dignity and Prevention (PHDP) which promotes holistic health and wellness, including human rights, legal protections, policy environment free of stigma and discrimination for PLHIV as well as access to HIV treatment, care and support services and by doing so contributes to the health and wellbeing of their partners, families and communities.

• It calls for leadership by people living with HIV, including those from key populations.
• It transforms the concept of access to services, from a simple biomedical model to a holistic approach to meeting the needs of people living with HIV and their families in their communities.
• It puts the person living with HIV in the centre, and calls for a comprehensive set of actions – at policy and service delivery levels – that take into consideration the individual’s lived environment.
• It recognises the importance of meeting not only the person’s clinical needs but also their health needs and to protect their human rights.

Positive Health, Dignity and Prevention was developed for and by people living with HIV based on numerous consultations. at the global, regional and national levels. It articulates the next stage in the HIV response, where people living with HIV are at the centre and services offered in an environment that is supportive to meet all the needs of people living with HIV and their families. Instead of being regarded by “positive prevention” programmes as mere recipients of care and vessels of a virus that needs to be contained, people living with HIV embrace a new paradigm where they are actively involved as part of the solution to the epidemic and not seen as part of the problem.

Zambia is one of the more urbanised countries of sub-Saharan Africa with a high rate of population growth. The country has ten provinces that are subdivided into ninety-five districts. Within the districts, the administrative units are Chiefdoms and Constituencies and the latter is made up of Wards.

• Almost 40 percent live in urban areas .
• Average household size is 5.2 .
• Life expectancy is 51.2 years .
• 45.4 percent of the population below the age of 15 years .
• 60% live below the national poverty line (2006).

The epidemic

The HIV prevalence among adults 15-49 years was 14.3% in 2007. Prevalence varies across regions, ranging from 7% in North-Western province to 22% in Lusaka province. The prevalence was about twice as high in urban (20%) than in rural areas (10%). In Zambia, HIV disproportionately affects more women than men, with women constituting 57% of the 1.2 million adults est mated to be living with HIV (UNAIDS, 2008). Women aged 20-24 are 2.3 times more likely to be HIV-positive than men of the same age group (Central Statistical Office, CSO, 2008).

Progress Since 2005, with support of development partners, the Government has provided free anti retroviral therapy (ART) in all public health insƟ tuƟ ons. The proportion of people who are both eligible for and able to access ART has increased from 38.9% in 2007 to 68% in 2009 (NAC, 2010). Over the years, the number of public and private facilitates providing ART related services such as CD4 counts has increased, resulting in improved services in both rural and urban areas. According to the 2009 Zambia Sexual Behaviour Survey,2 levels of HIV-related stigma and discrimination have in general been declining since 2005. Modest positive changes have been observed in proxy indicators to measure the level of stigma and discrimination (CSO, 2010).

The 2012 Zambia Country Report,3 listed several indications of the HIV epidemic being reversed including: a slight reduction in the percentage of the adult population living with HIV from 15.6 in 2001-2002 to 14.3 percent in 2007; a significant reduction in the percentage of young women 20-24 years living with HIV from 16.3 in 2001-2002 to 11.8 percent in 2007; in the antenatal sentinel surveillance the percentage of pregnant HIV-positive women in this age group dropped from 34.3 percent in 1994 to 28.1 percent in 2008-2009.

Among children born to mothers living with HIV, the percentage of infants contracting HIV reduced from about a peak of 7.72 per cent in 1997 to about 1.99 per cent in 2011 because of the reduction of HIV infection among pregnant women and the prophylaxes administered to women living with HIV in the prevention of vertical transmission. National coverage for this programme in 2011 at about 80 per cent was approaching near universal levels.

Challenges

The report also summarised challenges remaining: There are still sub-optimal numbers of children accessing ART, due to challenges in relation to the availability of infant diagnostic tests. Although the percentage living with HIV reduced among all the groups by sex and area of residence, it increased among men 15-49 years in rural areas from 8.9 per cent in 2001-2001 to 11.0 per cent in 2007. In fact, the gains in rural areas where the level of the epidemic can be said to be about half of that in urban areas were modest. Although the level of the epidemic in rural areas is much lower than in urban areas, the population affected is quite high since about 65 percent of the population lives there.

South African society continues to be seriously affected by HIV, together with its related diseases, especially tuberculosis. South Africa currently ranks the third highest in the world in terms of the TB burden, and the incidence has increased at alarming rates in the past decade. There have been signs of a steady decline in the HIV infection rate but South Africa continues to have the highest number of people who are living with HIV in the world, with an estimated 5.7 million people living with HIV.

The Positive Health, Dignity and Prevention report review the results of the different GNP+ evidence gathering tools that were applied in South Africa in recent years to assess whether the HIV response works within a human rights framework respectful of people living with HIV.

The Republic of Moldova is the poorest country in Europe (in terms of per capita income). The country is divided into 32 districts, five municipalies, the autonomous territorial region of Gagauzia and the administrative-territorial region located on the left  bank of the Dniester River known as Transnistria.

While Moldova registered a growth in GDP in recent years, unemployment remains high, wage arrears increased dramatically and external migrantion continues. There is a widening gap between rural and urban areas and also high levels of gender inequality. Moldovan women are mostly employed in low- paying jobs and occupy lower positions in the job hierarchy where they are employed.

People of Moldova:

• The average birth rate is 1.5 children per woman
•  Life expectancy is 69 years
• 29 % live below the poverty line.

The epidemic
The HIV epidemic in the Republic of Moldova is a concentrated one, mainly affecting people who use drugs. The results of the last HIV sero-prevalence survey among people who use drugs carried out in 2009 showed an HIV prevalence of 16.4% in the capital of the country. However in the last three years, the number of newly registered HIV cases among the tested people who use drugs is decreasing, according to the 2012 Country Progress Report.

Ethiopia is the second most populous country in Africa. The country has nine Regional States and two City Administrations. These are subdivided into over 800 administrative woredas (districts), which are further divided into kebeles, the smallest administrative unit. Ethiopia is one of the countries with the lowest per capita income, estimated at 390 USD per annum and over a third of the population live below the absolute poverty line. Nevertheless, it has one of fastest growing economies among non- oil producing countries in sub-Saharan Africa. In recent years, the country has seen rapid progress in economic growth, expansion of social infrastructure, and in improving healthcare.

People of Ethiopia:

•  The majority (83.9%) reside in rural areas
• The average household size is 4.7
• The average life expectancy is 51 years for males and 53 years for females
• Women in the reproductive age group constitute 24% of the population

The epidemic
With an estimated adult prevalence of 1.5%, Ethiopia has a large number of people living with HIV (approximately 800,000) and about 1 million children orphaned by AIDS  There is wide variation in HIV prevalence among administrative regions, and between urban and rural settings as confirmed by Demographic Health Survey (DHS) 2011: urban adult HIV prevalence was 4.2% (women 5.2%, men 2.9%) while rural adult HIV prevalence was 0.6% (women 0.8%, men 0.5%).

This report reviews the combined findings and recommendations of research conducted by NEPHAK using five GNP+ evidence gathering tools, trying to answer the questions how we can create a Positive Health, Dignity and Prevention (PHDP) Framework for Kenya. It explores whether the evidence contained within the five reports to describe the country’s progress towards achieving the values of PHDP and to document the existence and performance of the programmatic components (policies, services and initiatives) are ready to be integrated into a national PHDP framework, and then highlights recommendations most likely to improve the health and dignity of PLHIV in Kenya.

A thematic review was performed of the findings, conclusions and recommendations to search for any significant reference to the key PHDP themes and issues, as described by the PHDP Policy Framework. Observations were made on any topic which was not addressed in the LTA research.

The report summarises the key findings of the review, and describes the key barriers and opportunities to advance PHDP as suggested by the thematic analysis and the action steps for PHDP advocacy that can be drawn from the LTA research recommendations.

The Nigerian Network NEPWHAN used the data of the five evidence gathering tools that were implemented in the country to analyse in how far the country was working within the positive health, dignity and prevention framework. PHDP looks at people with HIV in a holistic way and within a human rights framework. You can read more about what this means here.

Positive Health, Dignity and Prevention highlights the importance of placing the person living with HIV at the centre of managing their health and wellbeing. As a step towards operationalising Positive Health, Dignity and Prevention, GNP+ and UNAIDS have developed Positive Health, Dignity and Prevention: A Policy Framework (January 2011). The Policy Framework provides the broad concepts that represent the first steps towards operationalising Positive Health, Dignity and Prevention.

The Policy Framework informs the development and implementation of operational guidelines that reflect linkages between a wide range of policies and programmes aimed at supporting and improving the health, dignity and prevention needs of people living with HIV. The Policy Framework has been developed through intense consultation with networks of people living with HIV, civil society, governments, UN cosponsors and donors globally.

Positive Health, Dignity and Prevention highlights the importance of placing the person living with HIV at the centre of managing their health and wellbeing. Positive Health, Dignity and Prevention: A Policy Framework (January 2011) was developed by GNP+ and UNAIDS through consultation with networks of people living with HIV, civil society, governments, UN cosponsors and donors globally.

The Policy Framework provides the broad concepts that represent the first steps towards operationalising Positive Health, Dignity and Prevention. The Policy Framework informs the development and implementation of operational guidelines that reflect linkages between a wide range of policies and programmes aimed at supporting and improving the health, dignity and prevention needs of people living with HIV.

‘Positive Health, Dignity and Prevention’ focuses on improving and maintaining the health and well-being of people living with HIV, which, in turn, contributes to the health and well-being of partners, families and communities. This brochure summarizes the concept of Positive Health, Dignity and Prevention.

This advocacy agenda is a tool for people living with HIV to advocate with other stakeholders in NPTs. It features six key points and is the outcome of the presentations and discussions at the consultation, as well as the working group’s recommendations. It is envisaged that this agenda is a work in progress that will evolve in response to the results of NPT clinical trials currently in progress as well as broader developments in HIV policy as it relates to HIV prevention and people living with HIV.

This working paper is intended to help build consensus among networks, groups and individuals living with HIV around what positive prevention means and how positive prevention can be better addressed within broader HIV prevention policies and programs. It will review existing conceptions of positive prevention, which have tended to center on the needs of people who are HIV-negative or who are HIV positive but not yet aware of their status, and which have mostly been developed by experts without the involvement of people who know they are living with HIV. This document will propose a different way to think about positive prevention, recommend specific services that should be included in a positive prevention package, and identify areas where further research and/or debate is needed.