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Released date: 10-May-2018
The International Community of Women Living with HIV (ICW) has been undergoing a process of strengthening our internal governance and communications policies and practices, including prioritizing a strong focus on and commitment to, the best interests of the diverse women living with HIV in our networks around the world. To ensure the success of the organization and to effectively achieve our vision and mission we have recently made some necessary changes to our leadership within the International Steering Committee.
ICW’s International Steering Committee (ISC) takes its responsibilities to represent the interests of women living with HIV globally and its duties as stewards of ICW’s vision and mission extremely seriously. Transparent and accountable leadership sometimes necessitates making difficult decisions to fulfil our fiduciary and oversight duties and act in the best interest of the whole of the network. After a process of dialogue and very careful consideration and discussion, several ISC members have been stepped down. These ISC members were stepped down as a result of serious failures to meet with their agreed duties as members of the International Steering Committee which has resulted in harm to the organization.
In the coming weeks, there may be misinformation and rumours going around about the events leading up to these necessary changes. In the interest of transparency, we share that this decision was unavoidable and was not taken lightly. We look forward to a new and committed set of ISC members representing our regions joining us shortly.
The selection of new ISC members to fill these seats remains ongoing and will be led by our regional networks. ICW is entering a new phase of increasing accountability and as such will be effecting changes to strengthen our governance and programming to ensure the organization is sustainable in to the future. Over the next year, ICW will focus on strengthening our core competencies and expanding our programming to better meet the on-the-ground needs of the networks of women living with HIV and key populations constituencies we represent globally.
We reinforce to ICW members, our strengthened commitment towards our mission and realizing our vision which is premised on inclusivity, mutual respect and collaborative partnership in service to women and girls, particularly, women and girls living with HIV.
TOGETHER – WE ARE ICW.
Released date: 09-Mar-2018
A new report ‘Walking in our shoes; Perspectives of pregnant and breastfeeding women living with HIV on access to and retention in care in Malawi, Uganda and Zambia’ released today in honour of International Women’s Day, highlights the key factors that facilitate retention in care for women living with HIV and calls for increased focus on rights and dignity in care. The report, presents the findings of community-led research related to the viewpoints and experiences of women who were initiated on antiretroviral treatment during pregnancy or breastfeeding and explores their perspectives on factors that have enabled them to successfully adhere to their treatment and retain in care.
The research for this report was coordinated jointly by the Global Network of People living with HIV (GNP+) and the International Community of Women living with HIV (ICW) in partnership with ICW Eastern Africa and ICW Malawi and the Network of Zambian People living with HIV/AIDS (NZP+). This research, carried out by and for women living with HIV was conducted in three countries, Malawi, Uganda and Zambia, all of which are early implementers of the lifelong ARV treatment program (Option B+). Focus group discussions were held with women living with HIV who utilized services along with key informant interviews with healthcare workers, government representatives, international NGOs and community groups.
The aim of this research project is to develop a set of best practices on how healthcare systems can retain women living with HIV into lifelong care now that pregnant women living with HIV are being offered lifelong treatment. The report outlines from their own perspectives what factors help women living with HIV adhere to lifelong treatment and care.
Rebecca Matheson, ICW Global Director explains “Over time the perspectives and experiences of women living with HIV have been instrumental in shaping policy and programs to ensure they respond to our needs. This research and the report provides evidence from women’s voices on what has been supporting and enabling facilitators for adhering to treatment and retaining in care. We applaud the women for sharing our collective experience because the insights from this report will contribute to the achievement of global HIV targets.”
Critically, the women living with HIV who were interviewed called for increased respect for their rights and dignity and said initiatives to address stigma and discrimination helped them retain in care:
“The health workers are very friendly and they don’t discriminate against us.” Woman living with HIV, Lambulira, Malawi
“It is confidentiality. When these people have confidence in you that can maintain them in care.” Healthcare worker, Entebbe, Uganda
“What motivates me to come for medication is that the doctors do not treat us badly. They do not bark at us and order us around saying, “I told you to go there”. The doctor handles you very well. He or she cares to look for your file if it gets lost so that you leave this place with medication.” Woman living with HIV, Entebbe, Uganda
The women interviewed also highlighted the importance of quality woman-centred services:
“We only have a single day when you can collect treatment. So we all come on the same day. We all make one big queue. Sometimes we see some women who keep going around without joining they queue because they are ashamed. We should have a system where you can come to collect drugs any day so that you can come to the centre at the time that is most convenient to you.” Woman living with HIV, Katete, Zambia
“The fact that the hospital combined baby clinics with ART appointments motivates me to stay on treatment because I have time to do other personal things” Woman living with HIV, Chitipa, Malawi
Another key facilitator identified in the report is the ongoing need for sustained practical and emotional support to empower women living with HIV:
“At the support group, we share with each other the challenges that we are facing while taking the ARVs and encourage one another on how we can overcome them.” Woman living with HIV, Makata, Malawi
“It’s the Community Volunteer, she really encourages me. Sometimes I am discouraged and want to stop medication but she encourages me.” Woman living with HIV, Chimtende, Zambia
“Women should get good counselling and encouragement. They should be told how they will feel when they start taking treatment …. They should be told the benefits, this is not the same for everyone; sometimes you can be sickly if you do not take medication however, with medication that can stop.” Woman living with HIV, Chimtende, Zambia
“We are already using the findings of this research very practically to work in collaboration with our Ministry of Health to build on Malawi’s programmatic successes and guide our work together to improve the quality of services and increase retention of women living with HIV in prevention of vertical transmission programming”, said Clara Banya, ICW Malawi, Research Team Member and Advocate
Laurel Sprague from GNP+ said: “Now that countries are offering lifelong treatment for women living with HIV it is critical that we support women to remain in care to monitor and maintain their own health and to prevent vertical transmission. Our research showed that women have a strong sense of the factors that can support them on their path of lifelong treatment. We must make sure we listen and adapt healthcare systems to better support women and their families.”
Global Network of People Living with HIV (GNP+) works to improve the quality of life of all people living with HIV. This means we advocate for, and support fair and equal access to treatment, care and support services for people living with HIV around the world.
The International Community of Women Living with HIV (ICW) is the only grassroots global network run by and for women living with HIV. ICW is the voice and representation of women living with HIV, in all our diversity. We currently work in 120 countries and through 10 regional networks: Asia Pacific, Caribbean, Central Africa, Eastern Africa, Europe and Central Asia, Latin America, the Middle East and North Africa (MENA), North America, Southern Africa, West Africa, the Chapter of Young Women and Girls (CYWAG) and our newly launched Indigenous Network of Women Living with HIV.
For More Information:
Florence Anam, Global Advocacy and Communications Manager
Coco Jervis, Senior Communications and Advocacy Officer
Released date: 17-May-2016
A beautiful storm is brewing and all roads are leading to Durban for the AIDS 2016. Young women living with HIV would not be left behind and are a tornado forming. Young women living with HIV have a powerful and valued voice in the community. We promise that the team selected after a rigorous search from the long list of applicants for the CYWAG AIDS 2016 Media Team will blow your minds away.
It will ensure whether you are at the AIDS Conference in Durban, South Africa July 18th–22nd in person or not you will be fully represented and no one will be left behind. This can be seen in the diversity of the team and their experiences. Together our ages are from 17–29 and we come from India, Wales, Kenya, Rwanda, Australia, Puerto Rico, Barbados and the United States.
“Being part of the team is the best thing ever, I am so excited and cannot wait to share my thoughts and experience with the world throughout this journey. It’s a dream come true,” Lucy Wanjiku from Kenya had this to say after being selected successful applicant.
The CYWAG Media Team seeks to ensure that all young women, adolescent and girls living with HIV around the world are represented. Their needs and issues as if they were there in person. Change begins when steps are taken that involve everyone. The team will be blogging, tweeting, ‘Facebookking’, writing media releases and gathering as much information as possible. The process which has already started will climax at the AIDS 2016 Conference in Durban. Let’s get geared together as we prepare for this amazing journey.
Women united cannot be defeated, young women working for others is the true spirit of a sisters keeper for AIDS 2016.
For more information:
Community Mobilization Manager
International Community of Women Living with HIV
Released date: 30-Nov-2015
Remarkable progress has been made in the fight against HIV/AIDS since the first annual World AIDS Day was commemorated 26 years ago.
Today ICW reminds GLOBAL POLICY MAKERS that there is no ending AIDS by 2030 without the involvement of women.
On this World AIDS Day (WAD 2015) ICW commemorates our sisters in the struggle who we have lost to AIDS. In their memory we work to raise awareness about the status of the pandemic, and to encourage progress in HIV and AIDS prevention, treatment, care and support. The theme of this year’s World AIDS Day, ‘Getting to Zero – Zero New HIV Infections, Zero Discrimination and Zero AIDS Related Deaths,’ underscores the urgent need to ensure access to treatment for all, end stigma and discrimination and ensure sufficient, and sustained domestic financial resources for HIV.
Millennium Development Goals (MDG 6);-Combat HIV/AIDS, Malaria and other diseases has been met and exceeded. The global response to HIV has averted 30 million new HIV infections and nearly 8 million (7.8 million) AIDS-related deaths since the MDGs were implemented.
Despite these advances, HIV still remains the leading cause of death among women of reproductive age, particularly in Sub-Saharan Africa where UNAIDS has reported an increase in new infections, particularly among adolescent girls and young women aged 10 – 24 years. Women continue to face intersectional burdens of HIV and gender inequality, and experience high levels of violence, stigma, harmful attitudes, discrimination and violations of their human rights including their sexual and reproductive health and rights. Women in key populations face a disproportionately high burden of HIV, particularly sex workers, women who use drugs, transgender women, and women from Indigenous communities. Denial of the fundamental human rights of women, persistent inequality and persecution of key populations are driving the epidemic in places such as Eastern Europe and Central Asia.
Global leadership have set a visionary goal to end the AIDS epidemic by 2030. It is clear that unless the structural inequities that impact women and girls and unless women are at the center of efforts to get to zero these ambitious targets will remain a vision rather than a reality.
On this World AIDS Day, we remember our sisters in the struggle and issue a call to action to:
- Invest in the use of research and gender disaggregated data for decision-making;
- Ensure that women living with HIV can realize their full human, sexual reproductive health and rights, and live free from stigma and discrimination;
- Governments to repeal, and civil society to push back against, punitive laws that continue to discriminate against and promote violence towards key populations of women living with HIV;
We ask all our Governments and donors to invest in networks of women living with HIV and civil society to educate, advocate, reduce stigma, and reduce HIV transmission.
NOTHING FOR US WITH OUT US!!
Released date: 25-Nov-2015
November 25th 2015.The Annual 16 Days of Activism Campaign is a global opportunity to galvanize action to end all forms of violence against women and girls. This year The International Community of Women Living with HIV (ICW) is taking action to raise awareness about disproportionate burden of violence experienced by women who do sex work. The ICW global network has many members who are both women living with HIV and who do sex work, we stand in solidarity with networks of sex workers around the world to end violence.
The 16 day campaign begins on November 25th the International Day for the Elimination of Violence Against Women and creates a critical back drop for World AIDS Day on December 1st until the 16 days of activism culminates on International Human Rights Day held on December 10th. ICW seeks to raise awareness about the multiple and intersectional forms of violence experienced by women living with HIV and those who do sex work.
Women who do sex work are at risk of multiple forms of violence including physical, sexual, emotional abuse, as well as discrimination and human rights violations such as humiliating, degrading treatment, denial of services and arbitrary detention and other forms of institutional violence. Violence also prevents sex workers from accessing HIV information and services and from realizing their SRHR. For women at the intersections of these identities, those who are both living with HIV and who do sex work the vulnerability to and the burden of violence is doubled. Gender-based violence is a driver of the HIV epidemic amongst women, including those who are sex workers. For this reason, HIV must be understood as both a cause and consequence of violence.
Criminalization of sex work including the criminalization of sex workers, third parties, sex workers’ clients, families, partners and friends, has a detrimental effect on the lives and health of sex workers. This is particularly true for sex workers living with HIV, in light of the intersections with laws that criminalize HIV non-disclosure, exposure, and transmission. As noted in a recent Lancet study on sex work and HIV, decriminalization of sex work could avert HIV infections by 33-46% in the next decade.
ICW recognizes and advocates for decriminalization of sex work as an important measure for protecting the human rights of sex workers and as an address to the violence that sex workers, especially those living with HIV, face around the world. Importantly, ICW recognizes that decriminalization is a key strategy to reduce the HIV epidemic and improve health outcomes for people living with HIV who engage in sex work.
All women living with HIV, including sex workers must be free from violence, coercion, stigma and discrimination. ICW demands an end to all forms of violence against women, and recognition of how violence against women and other forms of gender based violence impact the health and lives of women living with HIV.
ICW demands freedom from violence for all marginalized and vulnerable populations within communities living with HIV, including sex workers.
Violence against women must be accounted for and addressed in all efforts to respond to HIV.
JOIN US IN RAISING OUR VOICES IN SOLIDARITY TO END VIOLENCE AGAINST SEX WORKERS AND WOMEN LIVING WITH HIV.
Released date: 14-Oct-2015
The International Community of Women living with HIV (ICW) sends their condolences to the families, friends and loved ones of the six murdered sex workers in Kenya, respectively the four in Nakuru, one in Kisii, and one in Nanyuki. We stand in solidarity with the Kenyan Sex Workers Alliance (KESWA).
Please see the letter below and support the mothers, sisters, friends and lovers that wrote this for their and our community. Violence against one of us is violence against all of us.
Dear Mr. President
Please note; I am not hiding my face but the mask I wear is a symbol of how the society has chosen to view me; hidden behind the veil; not seen, not recognized; somewhere forgotten.
We as the sex workers community are saddened by the brutal killings of our community members. It is estimated that at least forty sex workers are murdered every month across the country. In a span of seven days, six sex workers have been murdered; four in Nakuru, one in Kisii and one in Nanyuki. Mr. President, these are mothers, sisters, daughters who are responsible for their families. Indeed, their children have been left without someone to take care of them; it is possible that their future may never be the same again.
This letter is loud cry for help from your esteemed office; we have looked everywhere for help that seems distant while the death toll continue to increase; our eyes have settled on you as our help to end these senseless killings;
In summary, our beloved president we request the following;
- Right to be free from violence
- Right to be protected by the law
- Those behind these killings be arrested and face the full force of law
- As sex workers be respected as human beings and citizens of this country
Mr. President, if you look at me, you will realize that I have worn a mask; you may wonder why?
Above everything, Mr. President allow me to remind you that I am a Kenyan citizen with a Kenyan ID, a registered voter who has voted leaders in to public offices; I was convinenced that with those that I voted into office that I shall no longer be subjected to this violence; I am utterly disappointed;
Protect us, fight for us, help us; we need you now more than ever to save lives before it is too late.
The Kenya Sex Workers Community
Released date: 11-Aug-2015
Call for Action!
Join us this August 12, International Youth Day in speaking out against stigma faced by adolescent girls and young women living with HIV when accessing SRHR services!
More than Our Status, our Bodies, our Sexual & Reproductive Rights!
Here are four easy ways you can get involved:
- Like us on Facebook!
- Follow us on Twitter!
- Download our toolkit, Tweet about it and share!
- Send us your picture to [email protected] with your name, city and a very short phrase expressing why HIV and Sexual Reproductive Health Rights (SRHR) of young people matters to you.
*We will be receiving pictures from August 6 to 10, and will share them on our Facebook page on August 12, International Youth Day.
ABOUT THE CAMPAIGN
United for a joint cause, 22 young HIV and Sexual and Reproductive Health and Rights activists came together for the Young Women’s Strategy Meeting in Abuja, Nigeria on April 28 – 29, 2015. During this strategic session the women from Nigeria, India, Kenya, Zimbabwe, Russia, Jamaica, Canada, Mexico, Puerto Rico and Vietnam spent time strategizing how to strengthen a joint response to address the stigma experienced by young women living with HIV in accessing sexual and reproductive health services.
The meeting’s outcome was the birth of a global campaign under the slogan – More than Our Status! Our Bodies! Our Sexual & Reproductive Health and Rights! with the hashtag #DoYouSeeHIV.
The Young Women’s Strategy Meeting is part of a one year project by the International Community of Women Living with HIV (ICW) and the Women’s Global Network on Reproductive Rights (WGNRR) funded by Oxfam Novib and Stop AIDS Now! Together we support the efforts of SHEWIH, a Nigerian coalition of activists coordinated by the regional ICW West Africa team, working together to build a strong, inclusive SRHR movement that fully addresses the needs of women living with HIV.
The project which will run until World AIDS Day, December 1, 2015, will support the amazing work that the networks of women activists are doing in Nigeria and around the world.
With the backdrop of International Youth Day, we are using #DoYouSeeHIV on August 12 2015 to raise awareness on how reducing HIV stigma can positively change the lives of adolescents and young women living with HIV and improve their access to quality sexual and reproductive health services.
OUR CALL FOR ACTION
This August 12, to reduce HIV stigma and improve access to SRHR services, we call on:
- National governments to:
- Incorporate adolescent girls and young women living with HIV in decision-making platforms including policy development and programming to enable the development of responsive interventions that meet the needs of adolescents and young women.
- Support the visibility and voices of adolescents and young women in challenging social and structural power norms to reduce HIV stigma at community and institutional levels.
- Guarantee full access to quality sexual and reproductive health services for adolescent girls and young women living with HIV.
- Link SRHR and HIV program policies to avoid duplicating efforts
- Ensure that the sexual and reproductive health needs and rights of adolescent and young people living with HIV are addressed
- Implement regional and global commitments towards ensuring Comprehensive Sexuality Education (CSE) for all adolescents and young people.
- Health care providers to:
- Commit to their responsibility of providing quality sexual and reproductive health services for all, especially adolescent girls and young women living with HIV.
- Tailor SRHR services to the specific needs and concerns of adolescents and young women living with HIV, including treatment for infertility, support for their sexual and reproductive choices with access to a full range of voluntary contraceptives, and protection from forced sterilization and forced abortion.
- Parents and guardians to:
- Commit to their responsibility of providing a safe environment at home free from stigma and violence to enable adolescents and young women living with HIV access to basic needs and rights including their SRHR.
- Adolescents and young women to:
- Commit to making healthy and informed choices in regards to their SRHR, and standing up for their right to make such choices free from coercion, misinformation and pressure.
Over the years, SRHR and HIV organizations and activists have called for an integrated approach to SRHR and HIV programs and services, in order to: reach a wider number of individuals and increase access to both HIV and SRH services; optimize existing healthcare infrastructures in resource-scarce settings; help reduce the stigma surrounding HIV; increase the availability and accessibility of SRH services for women living with HIV; and raise HIV awareness among women who may be unaware of their risk.
In 2014 UNAIDS reported that globally 15% of women living with HIV are aged 12-24 of whom 80% live in sub-Saharan Africa and 380,000 new infections occur yearly among them. Adolescent girls and young women, experience significant obstacles when exercising their SRHR, and frequently report worldwide abuses and violations of their sexual and reproductive rights, within their families, healthcare settings and communities. Reported violations include physical violence against pregnant women, refusal to provide proper information on the sexual and reproductive health services available, denial of access to services, stigma, discrimination and detrimental and judgmental treatment, lack of confidentiality and lack of informed consent based on their HIV status, and forced or coerced sterilization and forced or coerced abortion. As a result of these violations, women living with HIV receive substandard or harmful sexual and reproductive healthcare or feel forced to shy away from using HIV, SRHR and maternal and child health services altogether.
If we are to meaningfully realize the SRHR of all adolescent girls and young women, including women living with HIV, as well as effectively address HIV and AIDS, we must ensure the bi-directional coordination and integration of all aspects of HIV and SRHR services, and address the stigma experienced by women living with HIV when exercising their SRHR.
Join us this August 12 in our mission and speak out against stigma faced by adolescent girls and young women living with HIV when accessing SRHR services!
More than our status, our bodies, our Sexual and Reproductive Rights!
For more information please visit doyouseehiv.org
ICW Files Petitions to Join Kenyan Lawsuit Against Forced and Coerced Sterilization of Women Living with HIV
Released date: 31-Jul-2015
NAIROBI, KENYA- July 30, 2015 — The International Community of Women Living with HIV (ICW) filed two applications on 29 July, 2015 in the High Court of Kenya seeking to be enjoined onto two cases filed by Mr. Allan Maleche on behalf of five women living with HIV who have been unconstitutionally sterilized by way of tubal ligation, the Kenya Legal and Ethical Issues Network on HIV & AIDS (KELIN) and the African Gender and Media Initiative (GEM). ICW has been successful in its bid to join Petition 606 of 2014 as the 1st Interested Party while their application to be enjoined in Petition 605 of 2014 will be heard on 2 November 2015.
The sterilization of women living with HIV in Kenya women without their informed consent first sparked outrage in 2012, when a report published by GEM, in partnership with local networks of women living with HIV, titled ‘Robbed of Choice’, described the experiences of 40 women living with HIV who had been forcibly or coercively sterilized due to their HIV positive status. The five women living with HIV have sued Pumwani Maternity Hospital, Marie Stopes International, Medicins Sans Frontieres- France, Marura Maternity & Nursing Home, County Health Officials and the Health Cabinet Secretary for violations of their human rights in two cases filed on 10 December 2014.
ICW has been at the forefront of advocating against the practice of forced and coerced sterilization of women living with HIV and continues to mobilize and document the practice around the world. ICW’s member networks, the Namibian Women’s Health Network and ICW Southern Africa, first identified these violations in Namibia where they filed landmark case on behalf of women living with HIV. ICW Southern Africa along with its partners have also been litigating the issue of forced and coerced sterilization in South Africa.
“The forced and coerced sterilization of women living with HIV around the world is an egregious human rights violation and a part of a systemic pattern of discrimination and violations of sexual and reproductive rights experienced globally by women living with HIV,” said Rebecca Matheson, ICW Global Director.
If enjoined, ICW seeks to provide information on the experiences of women living with HIV around the world, including lived experiences of stigma, discrimination and human rights abuses and on the impacts of forced and coerced sterilization on the lives of women living with HIV.
“The lawsuits filed by Mr. Allan Maleche on behalf of the five women, KELIN and GEM represent a critical opportunity to secure access to justice and defend the human rights of women living with HIV, and there is no doubt that the outcome will have a significant impact on the lives of women living with HIV, in Kenya and around the world” said Sophie Brion, ICW Human Rights Attorney in the ICW Global Office.
ICW is represented in the Kenyan Courts by Carol Odour, LL.B from the Law Firm of Nungo, Odour and Waigwa Advocates.
For more information contact:
Sophie Brion ([email protected])
Human Rights Attorney
International Community of Women Living with HIV (ICW)
Florence Anam ([email protected])
Global Advocacy Manager
International Community of Women Living with HIV (ICW)
Released date: 22-Jul-2015
Vancouver, Canada: 21st July, 2015 – Today the Women’s Networking Zone (WNZ), coordinated by the International Community of Women living with HIV (ICW), in partnership with International Community of Women Living with HIV Southern Africa (ICWSA) and ATHENA Network, at the Gallery Gachet in Vancouver, launched the road map to a series of activities planned for the 21st International AIDS Conference (IAC) to take place in Durban from 17 to 22 July 2016.
In a ceremonious handover, the women of the Asia Pacific region handed over the torch to the women of Southern Africa region who will take the lead in organizing the AIDS 2016 WNZ in Durban.
The WNZ is a community-focused forum running parallel to the International AIDS Conference with a full program of workshops, critical dialogues, strategy sessions and performance arts.
Building on a long history beginning in Durban in 2000, the WNZ strives to continue to be the heart of women’s rights organizing and movement building leading up to 2016 and beyond.
The theme of the launch event was Building Bridges as we strive for a strong, unified feminist HIV movement for all self identifying women.
“Today, more than 30 years into the epidemic, women and girls account for over 16 million people living with HIV worldwide (over 50%). In sub-Saharan Africa, young women aged 15 to 24 are more than three times likely to be infected as young men in the same age group. As women and girls of Africa, we are more than excited and highly motivated to be in the lead and driving the agenda at the WNZ at AIDS2016, with the welcome support of our sisters and supporters all over the world. The WNZ resonates to the principle of ‘Nothing for us Without Us’. Women and girls, in all their diversities, need to be at the center of platforms shaping the agenda, policy and programming of the HIV and Reproductive Health initiatives. This opportunity gives women and girls of Africa the room to reclaim their spaces and share their experiences and expertise,” said Martha Tholanah, ICWSA Chair.
The WNZ is the heart of women’s rights organizing and movement building at AIDS 2016 and beyond. The objective is to elevate awareness at the global, regional and national levels – highlighting the disproportionate impact HIV and AIDS has on women and girls. The focus on Africa will provide advocacy skills and opportunities for women and girls, and set in motion greater engagement of those most affected. We are committed to leaving no one behind as we embark on the journey towards developing country and regional implementation plans for unfinished work for the Millennium Development Goals and set the pace for women and girls to actively engage in achievement of desires in the Sustainable Development Goals (SDGs).
New ICW and GNP+ Study on Early Infant Diagnosis Calls for Quality Information and Informed Choices for Women Living with HIV
Released date: 20-Jul-2015
Women are supposed to be given information on testing. No mother wants to give birth to [a] HIV positive baby… the [reason] some of the women don’t come for baby tests was because they were not given enough information on the importance of baby testing.
Vancouver, Canada, 20 July 2015 — Today, at the 8th International AIDS Society Conference on HIV Pathogenesis, Treatment and Prevention (IAS 2015), new community-led research conducted in Kenya, Namibia and Nigeria, reveals that a lack of quality information and continued stigma and discrimination against women living with HIV in health care settings is hampering efforts to scale-up early infant diagnosis of HIV (EID).
The report, titled Early Infant Diagnosis: Understanding the Perceptions, Values and Preferences of Women living with HIV in Kenya, Namibia and Nigeria, explored the values and preferences of women living with HIV regarding the current World Health Organization (WHO) recommendation of testing babies within the first 4–6 weeks of life in order to understand facilitators of, and barriers to, follow-up testing. The research was commissioned by the WHO to inform the development of new guidelines on EID and conducted by the International Community of Women Living with HIV (ICW) and the Global Network of People Living with HIV (GNP+).
Women living with HIV in all three countries report that adequate information and counseling on infant testing, including on the need to return for a confirmatory diagnosis, are not provided systematically and that vertical transmission programs have failed to sufficiently address persistent stigma, discrimination and rights violations in healthcare settings. For example, women in Kenya and Nigeria raised concerns that health workers did not always seek their informed consent to perform HIV tests.
They didn’t seek my consent, it was more like force.
The nurses don’t give information. The environment in the hospital is not good because some of the nurses the way they talk to us patients is not good. Instead of talking to you in a polite way they are just shouting at you, laughing at you, saying look at yourself you are HIV positive and you are giving birth. It is the attitude of the nurses that contributes to the problem [of women not coming forward for infant testing].
The WHO is considering new recommendations that infants born to women living with HIV receive a virological test at birth, and then the infant should be tested again at 4–6 weeks of age. Women in all three countries saw potential benefits of this practice, such as reduced anxiety about their child’s HIV status and knowing how to feed and care for the baby from early on. However, they also expressed concerns including the psychological impact of learning about their child’s HIV status soon after giving birth, and risk of disclosure of HIV status to family members who would be present at the birth.
Given the concerns about the potential increased stigma around testing at birth, the report calls for women living with HIV to be provided with information and counseled about testing options at an early stage (not just prior to or directly after delivery), to give mothers time to make an informed choice on the timing of HIV testing for infants.
“Women living with HIV must have access to accurate and comprehensive information about all aspects of prevention of vertical transmission of HIV, including infant testing and feeding, so that they can make informed choices. Their choices must be respected and their human rights protected,” said Rebecca Matheson, ICW Global Director.
The report highlights that increased uptake of infant testing is especially dependent upon the quality and availability of peer support and counseling. Pregnant women living with HIV reported receiving most information and support from other mothers or pregnant women living with HIV. Programs to prevent vertical transmission of HIV, must recognize and support the efforts of women living with HIV and their communities, or ambitious global and national targets will remain unmet.
“As the WHO prepares to issue new guidance, and countries prepare to step up their programs on early infant diagnosis, donors and governments need to move from rhetoric to actual investment in community-led treatment literacy and peer support.” said Suzette Moses Burton, Executive Director of GNP+.
Aditi Sharma ([email protected])
Global Network of People Living with HIV (GNP+)