Avac Event

New WHO guidelines on the use of ARVs for treating and preventing HIV

On June 30, the World Health Organization (WHO) released updated Consolidated guidelines on the use of antiretroviral drugs for treating and preventing HIV infection. AVAC, Global Network of People of Living with HIV (GNP+), the International HIV/AIDS Alliance (Alliance), and STOP AIDS NOW! (SAN!) held a webinar to discuss the guidelines and a new tool—Community Guide to Treatment as Prevention Programming.

The call included a brief overview of the guidelines by Gottfried Hirnschall, the Director of the Department of HIV/AIDS at WHO, as well as other resource people who were involved in the development of the guidelines and are engaged in translating these guidelines into practice.

In addition, Moono Nyambe from GNP+ discussed the “community” reactions toward the guidelines and described the collaborative effort led by GNP+, Alliance and SAN! to develop the Community Guide (to help communities understand the substance of the WHO guidelines and get involved in programming and implementation at country level).

Ntokozo Zakwe

Ntokozo is an HIV prevention and women’s health rights advocate. She currently works with Community Media Trust (CMT) as the DREAMS Safe Spaces Facilitator. Her passion for advocacy for women’s well-being has been intensified by her personal experiences as a young woman in South Africa who has struggled to stay HIV-negative, withstanding all the challenges and factors that leave women vulnerable to HIV. She has worked for the NGO Health Systems Trust, serving as a District Administrator in their DREAMS program and was chairperson of the UMgungundlovu District AIDS Council Youth Sector.

Fellowship Focus
Ntokozo’s project sought to influence young women’s access to gender-based violence (GBV) prevention, care and support in their communities as part of a comprehensive HIV prevention package in South Africa. She successfully spearheaded the inclusion of PrEP in centers that care for survivors of violence in KwaZulu Natal. She established a coalition of young women warriors who understand and influence GBV and HIV prevention policies and programs and she advocated for a roadmap for comprehensive GBV services and care in HIV prevention research in South Africa.

In Their Own Words
We must advocate and fight for the vulnerable populations and to ensure that the next generation does not go through half of the things we went through and that they won’t have to fight the same battles we’ve had to fight.

Ntombozuko Kraai

Ntombozuko has been a coordinator of Wellness Foundation’s Young Urban Women project in partnership with ActionAid International. She is a human rights activist focusing on young women and sexual and reproductive health with a special interest in gender-based violence. She has mobilized and educated the community around voluntary medical male circumcision, PrEP, microbicides, clinical trial conduct and more. She has also represented community on the protocol development teams for the vaccine study, HVTN 097, and the microbicide ring study, ASPIRE 020. Ntombozuko is raising three children—two boys and a daughter—and her desire is to see them respect women and to see violence of any kind as a crime.

Why I want to advocate for HIV prevention in 2016?
In South Africa, the HIV incidence rate amongst females aged 15-24 is four times higher than males the same age. There has been a lot done on HIV treatment, care and support, despite the current challenges of antiretroviral stock-outs. Activism has been built for many years and many HIV positive heroes have changed the status quo. We can learn as prevention activists from the ARV rollout but research is still a new concept for many communities. There is a need to educate young women on new biomedical prevention methods, the importance of research and how it’s done so that they will become champions of an HIV free generation.

Grace Kumwenda

Advocacy Accomplishments for the Year

During Grace’s Fellowship project year, she led the drafting of PrEP guidelines for Malawi’s Ministry of Health, ensuring the inclusion of PrEP for key populations in the 2018 treatment guidelines. Grace also identified the need for viral load testing as a key advocacy gap in Malawi where she worked on demand creation for its scale up. Her proven leadership as a Fellow facilitated her selection to be co-investigator for Malawi’s first PrEP demonstration study for sex workers. Grace’s work also paved the way for her organization Pakachere to become a selected member of the newly formed Global Coalition for HIV Prevention.

In Her Own Words

The project has changed my perception of advocacy totally. The fellowship year taught me the power of one’s voice, the power of coordinating with others to strengthen that voice and most importantly I learnt the importance of evidence, data and learning. I come out of the fellowship believing that I CAN influence change unthinkable, believing that I don’t need to be a medical doctor to be a bio-medical prevention advocate. I have learnt that advocacy is about talking to the right people in the right forums and that no voice is small!

Materials

Moses “Supercharger” Nsubuga

Moses is a musician, radio and TV presenter and HIV advocate who has lived with HIV since 1994. He has used the courage from the early days of his diagnosis to propel himself to the global stage as one of the most formidable HIV prevention, treatment and cure research community advocates. He currently chairs the Joint Clinical Research Centre’s Community Advisory Board and represents the African community on the ACTG, INSIGHT and AIGHD boards. He is currently training new prevention and cure research advocates and is also fundraising and constructing an HIV treatment and adherence center in Uganda.

Fellowship Focus
Moses’ Fellowship advocacy objective was twofold: to campaign for widespread use of viral load testing along with third-line treatment for those with ARV drug resistance and to put the need for cure research front and center in Uganda. He achieved the commitment of third-line therapy with support from PEPFAR. He also created the CRAG (Cure Research Advocacy Group) and co-hosted Africa’s first cure meeting for civil society advocates with IAS and AVAC. He projected the need for cure research through his radio program, and as a musician, has spread the word through songs about HIV drug resistance.

In Their Own Words
I will continue with my advocacy and spread the gospel to end the epidemic in every area. I hope to continue organizing cure meetings and plan to lobby IAS to take the cure academy to West Africa. I continue to lobby the Ministry of Health to regionalize third-line services and promote adherence interventions.

Materials

Moses was featured in a BBC World Service podcast. Listen to “Travelling Home Next to My Coffin”. He also appears in an article “I was diagnosed with HIV 25 years ago” in The Daily Monitor.

Sylvia Nakasi

Sylvia is currently the Acting Executive Director for the Uganda Network of AIDS Service Organisations (UNASO). She has extensive experience working on HIV prevention, research advocacy and program development and management, with specific focus on project cycle management, resource mobilization, capacity building, networking and advocacy at the community, district, national and international levels.

Fellowship Focus
Sylvia documented lessons learned about VMMC for HIV prevention implementation and influenced its rollout in Uganda. She also explored and documented perspectives regarding ARV-based prevention in Uganda in order to prepare for the possible introduction of pre-exposure prophylaxis (PrEP), 1% tenofovir gel and treatment as prevention.

In Their Own Words
In my opinion, as advocates it’s our duty to bridge the knowledge gap in our communities, sensitize the communities and help change their attitudes and behaviors towards interventions that would most benefit communities to make prevention and treatment a reality.

Sylvia’s Advocacy

Kenneth Mwehonge

Kenneth is currently implementing a new social accountability model that pairs a community scorecard with PEPFAR Site Improvement Monitoring Systems (SIMS) to strengthen the community/civil society accountability of PEPFAR programs in Uganda. He also coordinates CSO engagement with PEPFAR at the country level and oversees the implementation of community-led monitoring in Uganda. At the time of his project, he had more than six years’ experience in health promotion and advocacy. He has worked with both grassroots communities and national level stakeholders in promoting health and the rights of people living with HIV in Uganda by advocating for consumer-friendly policies.

Fellowship Focus
Kenneth’s project focused on promoting universal access to viral load monitoring services in Uganda. He established a national viral load monitoring advocacy group through the Uganda Coalition for Access to Essential Medicines, which contributed to creating overwhelming demand for the services. He also set up a community network of champions for monitoring a quality viral load services campaign and informed and shaped Uganda’s viral load rollout plan to set ambitious targets and succeeded in getting PEPFAR, the Global Fund and other stakeholders to commit more financial resources to the program.

In Their Own Words
More than ever, there is growing evidence that an HIV cure is possible. The AIDS response has come a long way, from a death sentence to now a manageable and preventable disease. Despite the availability of HIV treatment and prevention tools, we continue to lose one million lives annually due to lack of access, poor adherence and sporadic stock-outs of lifelong treatment in many parts of the world. To me, an HIV cure is the magic bullet to the zero death target, and this is my greatest inspiration.

My Work as a Fellow

  • Fact sheet on viral load testing: Kenneth developed this basic fact sheet for civil society and other stakeholders to use in their advocacy/work on viral load testing.
  • World AIDS Day statement: Kenneth worked with other civil society partners to write a statement on World AIDS Day 2015 calling for fast tracking of rollout of viral load monitoring in Uganda.
  • Policy brief: Policy makers are key for all advocacy initiatives, and Kenneth developed this “Policy brief on viral load monitoring in Uganda” specifically targeted at Uganda’s policy makers.
  • AIDS2016 Abstract: Kenneth’s advocacy on viral load monitoring in Uganda got highlighted when an abstract about it was accepted for presentation at the 2016 IAS Conference in Durban.
  • Fellowship summary report: “Increasing universal access to viral load testing for HIV treatment monitoring” is the final report that summarizes Kenneth’s Fellowship experience and activities.

Materials

Rumbidzai Mapfumo

Rumbi still works at her host organization, CESHHAR, and remains focused on ensuring that sex workers receive comprehensive health care throughout Zimbabwe. Rumbi did volunteer work in 2011 with TESHE Young Women’s Movement in Zimbabwe and also assisted at TESHE and worked on the film, Odyssey from Student to Sex Worker. Rumbi is a social worker, and her parents are founders of a church; this has guided her advocacy for marginalized populations and HIV.

Fellowship Focus
Rumbi advocated for the scale-up of ARV treatment among sex workers, directly facilitating and supporting their mobilization. She developed a draft of Treatment Guidelines for Sex Workers, promoted sex workers’ voices in different ministries and established circles to ensure that sex workers, civil society, policy makers, service providers and other key stakeholders have conversations that support sex workers to test, seek care and treatment and to optimize the benefits of ART for both prevention and treatment.

In Their Own Words
I learned to study politicians so as to get what you want: spend time going through their speeches to know what words they use and like, read about them and get to know them, make them feel special.

Maureen Milanga

Maureen is an Associate Director of International Policy and Advocacy at Health Global Access Project (Health GAP). She’s responsible for campaigning for increased access to HIV treatment, improving outdated HIV treatment policies, mobilizing civil society to demand better drugs faster, increasing civil society engagement to ensure meaningful participation and supporting the enhancement of key population service delivery and focus by governments and donors.

Fellowship Focus
Maureen engaged and influenced national and international processes in adopting the Kenya PLHIV Manifesto, monitoring Option B+ rollout, updating ART guidelines towards “treatment on demand”, and funding decision-making. During and after her Fellowship, she has continued to work with partners to successfully influence the allocation of hundreds of millions of dollars in US funding to more effective programs that focus on communities, including key populations in Kenya and several other countries.

In Their Own Words
PEPFAR cuts could force marginalized groups to seek services in general health facilities, where they are likely to face discrimination. In terms of service delivery, it is important to ensure that PLHIV and key populations have access to the latest treatment options and that the community supports their adherence.

Media

Taiwo Oyelakin

Taiwo was tragically killed in an accident in 2014. He was an advocate for the rights of young people living with and affected by HIV/AIDS with a special focus on the rights and dignity of those who are most marginalized. He provided technical support in the formation of the first network of young people living with HIV (YPLHIV network in Nigeria, APYIN). He also helped in the founding of Youths and Adolescents Network on Population and Development in Africa (AFRIYAN) and the Network of Young People Living with HIV in Africa (AY+N). Taiwo was also the co-chair of the Global Network of people living with HIV Y+ Leadership Initiative.

Fellowship Focus
Taiwo’s advocacy focused on optimizing the benefits of ARVs for both treatment and prevention and on ensuring that global treatment plans support and recognize individual human rights of PLHIV, including mothers considering Option B+. Taiwo was also among the first advocates to engage key stakeholders around the rollout of PrEP in Nigeria.

In Their Own Words
The successes we’ve seen over the last few years, including approval of Truvada for PrEP, could be game-changers in turning the tide against AIDS. I believe we can beat the disease, we can win this fight and we just have to keep at it, steadily, persistently today, tomorrow, every day until we get to zero.