Issue Papers and Statements

This brief has been prepared through collaboration with the Global Network of Sex Work Projects (NSWP), The International Network of People who use drugs (INPUD) and the Global Network of People Living with HIV (GNP+) and acts as the beginning of a joint effort to highlight the specific preventions needs and rights of women and girls in all our diversities. Together, in solidarity we seek to present insights on HIV prevention that works for women and girls in order to contribute towards the achievement of Global HIV Prevention targets and improve the quality of lives for women living with HIV and our communities.

Background

Globally women and girls in all our multiplicities continue to be vulnerable to HIV acquisition and remain disproportionately affected by HIV and AIDS in many regions particularly sub Saharan Africa. Current statistics show there were 1.8 million new infections among adults in 2016 of which 47% were among women while 58% of all new HIV infections among young persons (15–24) were among adolescent girls & young women and 2.1 million among children aged 0–14. There are 17.8 million women (aged 15+) living with HIV worldwide accounting for 51% of all adults living with HIV; 2.3 million adolescent girls & young women are living with HIV, accounting for 60% of all young people living with HIV.

Even with the milestones realized on the effectiveness of ART not only for prolonging lives of people living with HIV but also as a HIV prevention intervention there is very still poor access and retention to ART. 54% of people aged 15+ and 43% of children 0–14 years are currently on Anti-Retroviral treatment thereby directly affecting the success of treatment as prevention. The evidence is high particularly among women living with HIV in discordant relationships and within programs to prevent ‘vertical’ transmission from pregnant women living with HIV to their infants (PMTCT) program interventions where challenges of retention and adherence remain high despite accelerated efforts to ensure prevention by achieving the 90.90.90 targets.

Despite significant advances in the HIV response, women around the world in all our diversity still face a daunting set of barriers to accessing the HIV prevention, treatment, care and support we need to live healthy and productive lives. We also face significant barriers to realizing our human rights including achieving our highest standard of health and respect for our sexual and reproductive rights. These barriers range from fear, stigma and violence at the social and community level and lack of access to adequate and acceptable treatment, care and support; to violations of human rights. All of these barriers create vulnerability to HIV for many women. This vulnerability is exacerbated by HIV prevention programmes focused on individual behaviour rather than structural changes.

HIV prevention efforts for women are furthered hampered by the quite visible human rights violations that women already diagnosed with HIV often face. Human rights abuses faced by women living with HIV in healthcare settings include a lack of informed consent, stigma, discrimination and physical abuse at the hands of healthcare providers, refusals to provide services for example on provision of condoms, hostile attitudes towards women living with HIV who seek to have children, stigmatization, breaches of confidentiality, and involuntary and coerced testing for HIV. Forced or coercive sterilization has now been reported in over 30 countries worldwide. These barriers negatively impact service uptake, treatment adherence, often result in lossto-follow-up and decrease good health outcomes for women living with HIV. In addition, existing prevention programmes that provide social, academic, and social support services only to those girls who are not HIVpositive and excluding those living with HIV since infancy and those who acquired HIV in girlhood or adolescence trumpet the message that being female and having HIV means you no longer have a future or value in society. Women and girls may fear testing for HIV and avoid prevention, and even other health care services, to avoid testing positive and receiving these kinds of discriminatory treatment.

Differences of geography, religion, and politics notwithstanding, the global face of the HIV epidemic is largely female, yet women and girls continue to be marginalized within decision-making spaces and their input and expertise often tokenized and frequently dismissed. Women and girls who do sex work, women who use drugs, and transgender women face compounded violations of their human rights that, among other ill effects, limit or deny them access to HIV prevention and testing. Specific groups of women are disproportionately affected by HIV. An analysis of studies measuring the pooled prevalence of HIV in 50 countries estimated that, globally, female sex workers are approximately 14 times more likely to be infected than other women of reproductive age women who inject drugs are 28 times more likely to be living with HIV, and HIV prevalence is significantly higher amongst women who inject drugs. Lack of clear and disaggregated data on uptake and use of HIV prevention interventions by women particularly those from Key populations of prevention interventions like PrEP, PEP, use of condoms among others.

Additionally women need Prevention interventions that provide the dual ability to prevent HIV infections and prevention of other sexually and transmitted diseases while making it possible to enjoy their reproductive ability to get pregnant and have children. HIV prevention for women must mean HIV prevention for ALL women, cisgender and transgender, women who use drugs, women who do sex work, heterosexual, bisexual, and lesbian, rural and urban women, and incarcerated women.

The existence of progressive HIV prevention strategies like PrEP as well as Treatment as Prevention (TaSP) that prove critical for reducing new infections among women and girls come within a backdrop a global threat to the availability of resources for HIV response which has resulted in reduced funding for HIV non biomedical programs that are critical for ensuring communities remain motivated to access and retain to HIV prevention interventions. Civil society, community and networks of people living with HIV are constantly grappling with the realities for doing more with less resources. In order to maximize on this situation it is imperative to invest in interventions that are responsive to the needs of women and girls in order to ensure effectiveness and sustainability of programs as well as creating a balance for innovative ways of ensuring that interventions that have been documented to work for women and girls for example drug policies, harm reduction services and sex work preventions strategies do not risk being sidelined.

To this end, women and girls, in all our diversity, including transgender women, female sex workers, women who use drugs, and those living with HIV remain crucial stakeholders for successful HIV prevention interventions.

Women and girls who plan to or have children play an additional prevention role, through their influence on prevention of vertical transmission of HIV as well as ensuring that children born to mothers with HIV access immediate prevention interventions during pregnancy, birth and breastfeeding. Importantly, as caregivers of children and adolescents, they remain a direct link for their access to HIV prevention and treatment. Without women, we cannot effectively realise an end to new infections among children. Yet women who are sex workers or use drugs and women living with HIV too often are treated with disrespect and even violence when seeking sexual and reproductive health services. For example Women who use drugs face the very real risk of having their children taken into child custody services, as drug use is used as a criterion to remove children from their families. Women who use drugs may even be arrested. In Oder for women and girls living with HIV to remain committed to interventions that contribute towards prevention of new infection in children and their communities, they will need to be supported through implementation of progressive laws and policies that respect our rights including rights to sexual and reproductive health.

Making HIV Prevention Work for Women and Girls

Rights, Empowerment and Gender Equality

HIV prevention will only be effective in an enabling environment for which women and girls in all our diversities can be able to access HIV prevention interventions. Beyond the progress and effectiveness of biomedical interventions we know that there is no Ending AIDS without complementing structural interventions that support creation of an enabling environment in which women and girls can thrive and uptake HIV prevention intervention. Focus on addressing punitive and unfavourable laws that continue to criminalize HIV exposure, sex work, use of drugs, and non-conforming gender identity continue to be an impediment to up take and retention to HIV prevention services.

Stigma and discrimination has been evidenced as one of the leading reasons for women living with HIV dropping out of PMTCT care and non-adherence to ART that is useful for preventing vertical transmission. Programs for creating resilience among people living with HIV and their communities to address stigma and discrimination are key. Deliberate investment in the achievement of true gender equality that supports participation and engagement of all women and girls in design, planning, implementation and evaluation of programs that affect our lives is critical. The role of women’s participation remains critical in order to realise the aspirations of an end to AIDS.

Building Communities; Women at the Centre

At the heart of successful HIV prevention lies strong women’s voices and participation. Despite decades-old evidence showing that most successful and effective responses to health challenges begin at the community level, many successful grassroots responses have yet to be scaled-up and strengthened to withstand internal and external pressures that continue to threaten our operations and impede their sustainability. The role of women’s and girls’ participation remains critical in order to realise the aspirations to achieve HIV prevention targets. Sustaining these efforts can only happen in an environment where community-led organizations including; networks of people living with HIV, women who use drugs, female sex workers, and lesbian and transgender women have the required capacity to design, implement and monitor health and HIV interventions including those that provide community awareness, peer support and increase demand, uptake and retention to HIV prevention and treatment services. Capacity to argue for need for investment in building up that capacity, or sustaining that capacity. Decision makers and stakeholders should make deliberate efforts to invest in capacity building of community- led HIV response from country to global levels to ensure meaningful involvement and sustain leadership for accountability efforts by women and girls living with HIV.

Realizing The Dream

The global discourse and achievement of Global HIV targets can only be realized within a conducive environment in which women and girls, particularly women and girls living with HIV in all our diversity, are meaningfully involved and are at the centre of HIV prevention policy, program planning, development, implementation, monitoring and accountability processes. Preventing and reducing new infections 75% by 2020 is possible with deliberate involvement of directly impacted women. However these programmes must directly address structural drivers and gender norms that limit educational and career opportunities for women, legitimize violence against women, and criminalise women’s autonomy. Women’s engagement in the structure of the biomedical response can help to expand access to prevention and treatment commodities and services, improve uptake, increase retention thereby improving programme effectiveness and efficiency, reduce loss to follow-up and result in greater accountability within the HIV response for the longer term. The following are ways in which stakeholders can make HIV prevention work for women and girls:

• Galvanized political commitments – Towards investment in HIV prevention strategies for women and girls. Making clear country led investment cases for HIV prevention targeting women and girls having a direct impact on their overall sexual and reproductive health as well as maternal health outcomes.
• Respect for rights – Address structural gaps that continue to subject women to violations of our rights including sexual and reproductive health rights. Have clear indicators for measuring stigma among women living with HIV in all our diversities and develop programs for mitigating gaps identified including but not limited to replacing ineffective measures focused on criminalisation with rights affirming and evidence informed approaches.
• Strengthen access – Address access barriers including systemic gaps like stock outs of HIV prevention commodities and accessibility gaps from long distances to the health facility.
• Consistent and correct messaging – Provide correct messaging on HIV prevention consistently for women, girls, communities, health care workers and other stakeholders.
• Fortify peer support – For demand creation, uptake and utilization of HIV prevention and treatment services. This include retention to PMTCT services and adhering to ART for pregnant and breast feeding women living with HIV to reduce vertical transmission; and expanding HIV testing for women and girls post -partum and during post natal care.
• Address structural drivers – Instead of seeking magic bullet solutions to the crisis of HIV among women and girls, invest in the hard work and long struggle of identifying and addressing the root causes of gender inequality, entrenched gender power hierarchies – including informal and customary laws, regulations, and policies, and women’s poverty.

The first ever High Level Political Forum on Sustainable Development (HLPF) took place in New York City July 11–20, 2016. The theme was ‘Ensuring That No One is Left Behind,’ focusing on the Sustainable Development Goals, including implementation, partnerships, technology, and poverty (see the link to the program here).

Session 6: Ensuring that no one is left behind – Creating peaceful and more inclusive societies and empowering women and girls, aimed to address the needs of women and girls via the 11 SDG goals that contain gender focused indicators. Session 6 can be viewed here.

The HLPF included the first global SDG reporting process, called Voluntary National Reviews (VNRs), in which countries who volunteered to participate in this year’s review shared SDG experiences and good practices.

The United Nations Secretary General created flexible guidelines for the VNRs, and the review process requires a written report. This year, 22 governments volunteered for national reviews of their progress in implementing the SDGs. Since implementation processes of the 2030 Agenda started only very recently for most countries, they were not expected to report on the review of 2030 Agenda and SDGs, but instead could focus on any activities or implementation at the country level. Country reports can be viewed here.

In terms of follow-up to the VNRs, some countries feel that there should be no follow-up to the reviews, because they are voluntary. The Secretary-General recommends that in future HLPFs, detailed recommendations for countries that presented a VNR could be included in the outcome document, and “could be used by countries having presented at the HLPF as a source of information, guidance, or support for the mobilization of resources, including for capacity building.”¹

Key Points from the SDG Progress Report

The HLPF outcome document; the 2016 SDG Progress Report, draws conclusions “through examples of disaggregated data that pinpoint where specific population groups are lagging behind.”² However, disaggregated data about women generally, and regarding women living with HIV specifically, does not often exist.

• The report broadly acknowledges, “Gender equality remains a persistent challenge for countries worldwide and the lack of such equality is a major obstacle to sustainable development.” But,
• The report fails to recognize lack of gender equality as a primary obstacle to sustainable development.
• It briefly mentions sexual violence against women and girls as one barrier to achieving the SDGs: “Survey data from 31 low-and middle-income countries suggest that the proportion of women aged between 18 and 29 who experienced sexual violence for the first time before the age of 18 varies widely, ranging from zero to 16 per cent.” However,
• Women and girls living with HIV know from our diverse experiences that these percentages are, in reality, substantially higher.
• The report remarks on inequalities in employment for women and girls as a barrier to sustainable development. But,
• It makes no mention of overwhelming structural inequities women and girls face; for example, it mentions nothing about the heavier poverty burden women and girls bear worldwide.

In its most critical oversight, the report does not mention any links between women and girls and HIV, nor does it cite women and girls living with HIV as an important population that must be engaged in order to achieve the SDGs.

 

In light of the 2016 High-Level Meeting on Ending AIDS, the ICW Chapter for Young Women, Adolescents, and Girls (CYWAG) and the Women’s Global Network for Reproductive Rights (WGNRR) emphasize the need to place young women and girls living with HIV at the center of all strategies and responses to ending the epidemic. In particular, the full human rights of young women and girls living with HIV must be realized, including their sexual and reproductive health and rights (SRHR)!

As we know, gender inequality continues to play a huge role in increasing young women and girls’ vulnerability to HIV and other sexually transmitted infections. The current context of HIV clearly illustrates how the virus disproportionately affects young women and girls, where:

• Every minute a young woman is infected with HIV;¹
• Young women and girls make up 64% of all new infections among young people;²
• HIV is the leading cause of death among women of reproductive age;³
• Less than 30% of young women and girls around the globe have correct and comprehensive knowledge on HIV.⁴

SRHR are central in promoting gender equality, ensuring comprehensive HIV treatment, and preventing new HIV infections; all key factors in achieving social justice, women’s and girls’ empowerment, and sustainable development. As such, any approach intended to fast-track the HIV and AIDS response and end related stigma and discrimination must ensure SRHR for all.

When a holistic approach to SRHR is implemented, including the provision of comprehensive sexuality education (CSE) and youth-friendly services, young people are equipped with the tools and information they need to exercise meaningful and informed decision-making power in relation to their sexual and reproductive health, thereby enabling the attainment of a whole range of other rights. Yet because of ongoing gender inequality as well as socio-cultural norms and taboos, young women and girls worldwide face considerable challenges in exercising their SRHR, particularly if they are living with HIV.

When trying to access sexual and reproductive health information and services, young women and girls living with HIV are often multiply marginalized, as a result of their age, gender, economic situation, and HIV status. As such, they are often at high risk of experiencing violations of their sexual and reproductive rights,⁵ such as discriminatory and humiliating treatment; breaches of consent and confidentiality; physical and emotional violence and abuse; and denial of services.⁶ In some cases, young women and girls living with HIV are subjected to forced or coerced sterilization and abortion⁷, amounting to cruel and inhumane treatment and torture, as recognized by international and regional human rights bodies.⁸

When the SRHR of young women and girls is unmet, their ability to manage their HIV care and overall health outcomes is impeded, thus hindering their wellbeing, as well as efforts to strengthen HIV prevention and eradicate related stigma and discrimination. As importantly, the neglect and denial of the SRHR of young women and girls living with HIV is tantamount to violating their fundamental human rights and freedoms.⁹ For as affirmed by States worldwide through the 1995 Beijing Declaration and Platform for Action, the human rights of women include the right for all women to “have control over and decide freely and responsibly on matters related to their sexuality, including sexual and reproductive health, free of coercion, discrimination and violence.”

With this in mind, when implementing HIV/AIDS related strategies and in the context of the 2030 Agenda for Sustainable Development, we urge governments to:

• Reaffirm the right of young women and girls living with HIV to choose who to love and be intimate with, as well as to choose if and when to be sexually active, free from coercion, discrimination and violence;
• Meaningfully integrate HIV and SRHR programming and services, to ensure the health, rights and wellbeing of all young women and girls in all their diversity;
• Facilitate universal access to CSE which is gender-sensitive, evidence and rights-based, and provided via a holistic and positive approach;
• Ensure universal access to youth-friendly sexual and reproductive health services, including a full range of voluntary and high-quality contraceptives, as well as access to safe, legal and affordable abortion services, free of marital and parental consent requirements;
• Take all measures to end the deplorable practice of subjecting women living with HIV to forced, coerced or uninformed sterilization;
• Ensure universal access to antiretroviral therapy, of central importance in the prevention of mother to child HIV transmission and transmission between sexual partners;
• Fully involve all key affected populations, including adolescent girls and young women living with HIV, in any and all approaches intended to fast-track HIV and AIDS responses and end related stigma and discrimination.

In light of this High-Level Meeting, we call upon governments and the international community to recognize the agency of young women living with HIV over all aspects of our bodies and our lives, and ensure our central involvement and leadership in all policies that affect our communities.

Our Bodies, Our Sexual and Reproductive Rights!

 

We, young women living with HIV in all our diversity, demand proper access to heath, including sexual and reproductive services, treatment and change in policies!

As we celebrate the International Day of Action for Women’s Health, we celebrate all the milestones we have made in ending the HIV epidemic and inclusion of young women to ensure that we have our voices heard and that no one is left behind.

Young women living with HIV all over the world have been working relentlessly to support our peers in empowerment and formation processes, including accepting our HIV status as something that only makes us stronger, and embracing our bodies as unique, beautiful and powerful no matter the shape or size. We recognize that we have autonomy over our sexuality, our femininity, our womanhood and every single matter regarding our wombs, and sexual and reproductive health and rights. We recognize and embrace our right to choose to disclose or not disclose to our partners, families and any other person, whenever and however we decide to.

The issue that remains a thorn in the flesh is the low accessibility to treatment cutting across all groups of young women living with HIV. We must have high quality health services, including for sexual and reproductive health and treatment that is available, accessible and affordable. These services must be evidence based, with a gender perspective, diversity conscious and youth friendly, so adolescents in transition don’t get lost in the system, reducing the number of deaths among adolescents.

We, young women in all our diversity, are calling on Governments and other key decision makers to:

1. Eliminate adverse, discriminating and unsafe laws and policies including criminalization of HIV transmission, which continue to impede HIV prevention and treatment, and haven’t impacted positively in any effect on the incidence reduction.
2. Eliminate the criminalization of key populations like young women who use drugs, young sex workers and young lesbians and men who have sex with men which put these populations in unsafe situations and endangers their lives.
3. Create more mechanisms to ensure impactful engagement and rights implementation of the commitments already taken to reform punitive legal policies and frameworks aimed at young people living with HIV.
4. Recognize that we have autonomy over our bodies, and that gender based discrimination and violence is a barrier to ending AIDS by 2030.
5. Ensure that young women’s rights, especially of those most marginalized are upheld by reducing violence against women, especially in conflict settings.
6. Recognize that sexual and reproductive health and rights encompasses abortion on demand, clear guidelines on breastfeeding for women living with HIV, freedom from forced and coerced sterilization, rights-based prevention of mother to child transmission (PMTCT) programs, as well as increased commitment and investment to ending maternal mortality.
7. Recognize that women living with HIV are not only mothers, but we are also independent human beings, who are also deserving of our full human rights including sexual and reproductive health and rights and access to treatment.

To mark the International Day of Action for Women’s Health, GNP+, ICW and the IATT are launching “Positive Health, Dignity and Prevention for Women and their Babies: A treatment literacy guide for pregnant women and mothers living with HIV”

In line with the Day of Action’s call for a holistic inclusive and human rights-based approach to women and girls’ health, this new treatment literacy guide is a practical informative tool that reflects the latest WHO guidelines.

Available in both English and French, the guide is designed to offer a complete package of guidance for women living with HIV who are pregnant or considering getting pregnant.

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.

Quotes from the community

“When we piloted the materials, for the PMTCT guide the flipchart captured the women’s attention, ensuring a highly interactive discussion in which everyone participated.

Women in our support groups have shared that they get a lot of mixed messages and poor information, and they hope this PMTCT guide will open a dialogue on how best to ensure that women living with HIV have correct information and practical support for their pregnancy and experiences of motherhood.”

“The treatment literacy guide on PMTCT is one of its kind in Zambia. NZP+ and other community groups have been waiting for such a tool to guide us in our efforts to support women living with HIV to make informed decisions about their lives, free of stigma. The design and format would work very well in our country. NZP+ has community and health facility based supporters who conduct weekly/ monthly support sessions with women living with HIV on various health issues including family planning and PMTCT and we look forward to using the guide during these sessions.”

“Enfin un outil qui peut nous permettre de booster les choses, de nous activer en tant que femmes vivant avec le VIH pour emmener les femmes concernées elles même à comprendre les contours de la PTME.” (“Finally a tool that allows us to advance, to rise up as women living with HIV to lead women to engage themselves in understanding the issues surrounding PMTCT”).

“En plus cet outil facilitera aussi le renforcement des réseaux des femmes et leur leadership.”

(“This tool will also strengthen networks of women and their leaders.”)

“As a West African activist on PMTCT, I noticed that our communities don’t always have access to or understand the global guidelines from WHO. The technical language with no images, was hard to communicate at a community level. There was a kind of disconnect between the global level and community level.

We welcome this treatment literacy guide for PMTCT. It will allow women to more easily understand the latest science and a comprehensive approach to PMTCT along all four pillars.”

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.