HIV/AIDS

Establishing a WHO Advisory Group of Women Living with HIV

8 April 2019 – The World Health Organization, building on past collaboration with women living with HIV, is seeking to establish an Advisory Group of Women Living with HIV.

Young women in Bangladesh
WHO/SEARO/G. Hampton

Woman-centred health services involve an approach to health care that consciously adopts the perspectives of women, their families and communities. This means that health services see women as active participants in, as well as beneficiaries of, trusted health systems that respond to women’s needs, rights and preferences in humane and holistic ways. Care is provided in ways that respect women’s autonomy in decision-making about their health, and services must include provision of information and options to enable women to make informed choices. The needs and perspectives of women, their families and communities are central to provision of care, and to the design and implementation of programmes and services. A woman-centred approach is underpinned by two guiding principles: promotion of human rights and gender equality.

Consolidated guideline on sexual and reproductive health and rights of women living with HIV, World Health Organization, 2017

Introduction

In October 2013, a global reference group of women living with HIV was formed, to develop and then conduct a global values and preferences survey of women living with HIV. The survey, commissioned by the WHO Department of Reproductive Health and Research (RHR), supported the development of the 2017 WHO Consolidated guideline on sexual and reproductive health and rights of women living with HIV.

The guideline promotes woman-centred health services through an approach to health care that consciously adopts the perspectives of women, their families and communities. The guideline aims to provide: evidence-based recommendations for the sexual and reproductive health and rights of women living with HIV in all their diversity, with a particular focus on settings where the health system has limited capacity and resources; and good practice statements on key operational and service delivery issues that need to be addressed to (i) increase access to, uptake of, and the quality of outcomes of sexual and reproductive health services, (ii) improve human rights, and (iii) promote gender equality for women living with HIV.

Women involved in the process to inform the guideline have described the process as “empowering and enriching”. Once the survey was published, during the subsequent guideline development process, women living with HIV were also invited to be part of the Guideline Development Group and the External Review Group. The resulting guideline cites findings from the survey throughout. Since the guideline’s publication in February 2017, women living with HIV, with WHO support, have created a checklist to support community advocacy towards implementation of the guideline.

During the last year, several women living with HIV have communicated with the WHO Director-General, calling for greater action by WHO to implement recommendations from the 2017 guideline and to provide broader support to women living with HIV. They expressed appreciation for the level of engagement involved in the development of the guideline and requested that WHO adopt similar approaches more widely.

Women have also expressed concerns about WHO communications related to the HIV drug dolutegravir, and the increased risk of neural tube defects during pregnancy. They have requested meaningful engagement in processes planned for 2019 to revise HIV treatment guidelines.

In response to these requests, the WHO Director-General proposed that WHO establish an Advisory Group of Women Living with HIV by mid-2019 to advise WHO on these issues and related matters.

Directors of the WHO Departments of RHR and HIV have led a process to develop the terms of reference for an advisory group, building on useful inputs from communities, including a proposal submitted by the Salamander Trust, on behalf of a diverse range of women living with HIV, on 9 March 2019.

Purpose

It is proposed that a group be established for an initial 24-month period to:

  • ensure the perspectives of a diverse group of women living with HIV are heard and considered across WHO in relation to HIV and/or sexual and reproductive health and rights;
  • ensure diverse positive women’s voices inform broader WHO priorities, for example those related to achieving universal health coverage and primary health care;
  • provide non-binding advice to the Assistant Director-Generals responsible for Universal Health Coverage, Communicable Diseases, Noncommunicable Diseases and Healthier Populations, and inform, as appropriate, deliberations of relevant WHO scientific and technical bodies, including the WHO Guideline Review Committee, the WHO Strategic and Technical Advisory Committee on HIV and Viral Hepatitis, the WHO Gender and Rights Advisory Panel and/or the Scientific and Technical Advisory Group on Reproductive Health;
  • support implementation of, and review and monitor progress since publication of, the 2017 WHO Consolidated guideline on sexual and reproductive health and rights of women living with HIV;
  • ensure diverse positive women’s voices meaningfully inform the 2019 HIV antiretroviral guidelines update including through participation in the values and preferences work at global and country levels, which is being convened by the International Treatment Preparedness Coalition (ITPC) under a WHO contract; and
  • ensure women living with HIV are updated on changes and opportunities emerging at WHO as part of its transformation.

It is proposed that after 18 months the advisory group undertakes a process to evaluate whether an extension or evolution of the group is needed beyond its initial 24-month period.

Composition

WHO will determine participation based on the criteria described below to ensure diverse perspectives are included within the advisory group. The criteria build on suggestions from the 9 March 2019 proposal:

  • Women living with HIV over the age of 18 who are, or have been, affiliated with networks of women living with HIV and/or women’s/human rights groups at national, regional or global level.
  • Women from all WHO regions: at least two members with global-level expertise; at least two members from the WHO African Region; at least one member from the WHO South-East Asia Region; at least one member from the WHO Region of the Americas; at least one member from the WHO Western Pacific Region; at least one member from the WHO European Region; and at least one member from the WHO Eastern Mediterranean Region.
  • Diversity: women able to share a range of perspectives in relation to sexual orientation and gender identities; women who use drugs; women who engage in sex work; women from a broad age range including young women and women born with HIV; and women with experience of multiple forms of discrimination including in the context of the health sector.
  • Familiarity with WHO’s work and mandate: women with experience working with WHO and/or its key areas of work, including those who can demonstrate links to the development and/or implementation of the Consolidated guideline on the sexual and reproductive health and rights of women living with HIV, and women engaged in work to ensure optimal HIV treatment in their communities and those who will be available to support ITPC-led country consultations.

Members will be expected to demonstrate commitment to advancing progress for HIV and sexual and reproductive health and rights. Women will be appointed in their individual capacity and will not be asked to represent their organizations. Advisory group members are not permitted to use the WHO name or logo or issue statements and/or communicate positions on behalf of WHO.

Advisory group membership is voluntary. WHO will support the functioning and operations of the advisory group and will meet travel and per diem expenses for at least one annual meeting for the initial two-year period.

WHO anticipates four advisory group calls a year and one annual face-to-face meeting. Members will be asked to meet the following requirements to ensure the advisory group is optimal in its work:

  • a response to at least 80% of requests for written feedback;
  • attendance at all teleconferences or apologies for any non-attendance sent to meeting organizers; and
  • ability to communicate in English.

Advisory group members will be free to resign at any time. Those who decide to step down are requested to alert WHO as soon as possible, to allow for the identification of a replacement. Ideally a minimum of one-month notice is requested. Members who fail to attend three teleconferences will be deemed to have withdrawn from the initiative.

The group will comprise 15–18 members. Women living with HIV from partner organizations, for example UNAIDS or the Global Fund, may be invited to participate as partner observers. Women will be appointed for the initial two-year period proposed for the group at the discretion of WHO. WHO reserves the right to terminate participation of any member of the advisory group, or the advisory group itself, at any time.

Recommendations emerging from discussion are, by nature, non-binding and of an advisory nature. Where possible they should be achieved through consensus; where consensus is not possible, majority and minority views can be represented.

A chair will be selected by WHO through a transparent process with advisory group members. The chair will serve for the initial two-year period. She will oversee the objectives and activities of the advisory group, and will chair the annual face-to-face meeting.

Operations

Applicants will be asked to note that the first meeting of the advisory group will be held virtually through a Zoom or WebEx conference at 14:00 CET 10 May 2019.

The first full meeting will be held in September/October 2019.

Designated WHO HIV and RHR Department focal points will manage the overall collaboration. Directors of the WHO Departments of RHR and HIV will ensure that advice emerging from the advisory group is communicated and considered appropriately within and across WHO.

The call for interest was posted during the week of 8 April 2019, with a deadline for expressing interest of 20 April 2019. Following closure of the application process, WHO will identify 15–18 members for an initial conference call on 10 May 2019. The first call will include an agenda item focused on finalizing advisory group membership, identifying a chair and addressing any gaps within the group.