Raped at 11, Ntokozo is Finally Able to Tell Her Story, 13 Years Later

This blog post, written by Zizo Zikali, first appeared on What’sUpHIV as part of a series covering the 8th South African AIDS Conference.

gender based violence protestors

Ntokozo Zakwe is a young woman from Hillcrest in KwaZulu Natal who was raped when she was only 11 years old. The man who raped her threatened her and said there would be consequences if she told anyone about it. Now, thirteen years later, she is ready to tell her story.

“The only way I found healing is when I joined DREAMS to help young girls who have been exposed to gender based violence,” says Ntokozo. “Most of them remain silent. The justice system is failing us… how can a person who has caused so much damage in a woman’s life serve only five years?” asks Ntokozo.

DREAMS stands for Determined, Resilient, Empowered, AIDS-free, Mentored and Safe. This initiative runs in South Africa, and also Kenya, Lesotho, Malawi, Mozambique, Swaziland, Tanzania, Uganda, Zambia and Zimbabwe and the aim is to reduce HIV infections amongst adolescent girls and young women. Through DREAMS, Ntokozo receives counseling as a survivor of gender based violence and she also gets to hear about youth friendly health services in her area.

“There are a number of challenges faced by young women,” says Ntokozo. “We have been crying out about the unfriendliness of health care workers in public health facilities. There should more be Thuthuzela Centers, for example, the city of Pietermaritzburg is serviced by one center. I only opened up about the rape case last year after joining DREAMS.”

At the 8th Southern African AIDS conference we heard that unreported cases of gender based violence may hinder the government’s plan to end the HV epidemic by 2030. The conference outlined a range of tools for HIV prevention, but it is important that people know about them. Young women who are raped need to know about PEP, or post-exposure prophylaxis, which is antiretroviral drugs to take after risky sex or rape. At the conference, young women made their voices heard about the challenges they face and the risk of becoming HIV infected.

In South Africa it still difficult to get trustworthy statistics of rape and gender based violence. Many who have survived a rape never report it or they report it only much later like Ntokozo did.

AVAC’s Snapshot from IAS 2017

“To hell with sitting in this meeting. Shut up! Stop talking!” Sibongile Tshabalala, fresh with grief over the recent death of irreplaceable activist Prudence Mabele launched the International AIDS Society meeting in Paris this week with a burning call to action and tribute to both Prudence and activist physician Mark Wainberg. Both, she said, would want far less talk and far more action. She led participants in the Prudence Pledge—which included the essential commitment to be “innovative, unconventional and inconvenient in our approaches to ending the AIDS epidemic.”

Meeting participants stood to take the pledge—and yet the meeting itself continued, one in a field that is now entering its third decade of annual IAS meetings: we feel there’s too much talk, yet we sometimes need to gather in shared grief and to rekindle the fire needed to keep fighting.

And perhaps that’s the task of this, and every, AIDS conference: to hold multiple realities at the same time. There is good news and bad news, often in the same story. There is promise in what’s available today—this is the first meeting where people are reporting on daily oral PrEP delivery, rather than the potential of this new tool. But daily oral PrEP isn’t a magic bullet; and there’s a need to continue finding new tools, too.

An early good news story—first promoted by UNAIDS in its annual progress report last week—that the world is making progress in achieving the 90-90-90 goals, and that these targets (90 percent of people living with HIV knowing their status; 90 percent of those people on ART; and 90 percent of those on ART virologically suppressed) will carry the world towards ending epidemic levels of HIV.

This good news was amplified on Monday with a presentation from the Swaziland Ministry of Health on the 2016 Swaziland HIV Incidence Measurement Survey. Research teams went house to house and, when individuals gave consent, administered HIV tests and collected blood samples that could be tested for the presence of HIV and for viral load. This method gives a more precise, representative picture of the number of people living with HIV in a country than other approaches, such as measuring HIV among pregnant women at antenatal clinics. A survey had been conducted in Swaziland in 2011 using the same methods—providing the first opportunity to compare new HIV diagnoses and levels of virologic suppression in a community over a period where “test and treat” with antiretroviral treatment (ART) was introduced. The good news is: It worked. During a period when ART use nearly doubled, rates of new HIV diagnoses were nearly halved, and HIV virologic suppression doubled. Today, more than 80 percent of Swazi people living with HIV are on ART, and this is very good news indeed.

But is it good enough? Unfortunately, no. As we noted last week, the UNAIDS report—while generally celebratory—contains plenty of reason for concern. There are glaring gaps in primary prevention including PrEP, voluntary medical male circumcision (VMMC), comprehensive harm reduction programs for people who inject drugs, stigma reduction—an issue tackled with eloquence and urgency in the Key Populations Declaration released earlier this week. Even in treatment, the picture isn’t rosy. Overall, the world is not on track to meet Fast Track targets for treatment, either. In 2011, UNAIDS galvanized the world around a goal of universal access to ART; this year’s report shows that just over 50 percent of people living with HIV are on ART. While countries in East and Southern Africa could potentially reach their 90-90-90 targets by 2020, success depends on sufficient resources to sustain the newly achieved speed of treatment scale up. However, West and Central Africa, Caribbean, and Asia Pacific are all not on track to hit the 90-90-90 targets.

Even in Swaziland, there’s a need to look more closely. Young people were less likely to know their status, be on ART or be virologically suppressed both in 2011 and 2016. Swaziland has been rolling out a comprehensive package of interventions for the most vulnerable adolescent girls and young women under its DREAMS program—with testing as a core component. The findings would seem to suggest that there is still ground to cover in meeting the needs of girls and women—something Prudence Mabele never stopped saying.

Monday also provided a glimpse of the future of biomedical prevention trials. Hanneke Schuitemaker from Janssen presented results from the APPROACH trial of a vaccine strategy that utilizes a mosaic immunogen—synthetic viral fragments designed to teach the body to defend itself against diverse viral subtypes. This Phase IIa trial measured the safety and immune responses of various pairings of the vaccine containing the mosaic immunogen (known as Ad26, after the adenovirus vector that carries the immunogen into the body) with other “boosts”—vaccines designed to bump up immune responses. All of the trial arms were safe and immunogenic; a combination of Ad26 plus a protein boost had the highest immunogenicity. These data, plus information from the ongoing TRAVERSE trial, will inform the design of a planned efficacy trial, known as HPX2008/HVTN 705.

By the time HPX2008/HVTN 705 starts, two trials of long-acting cabotegravir (CAB-LA) should be underway. On Tuesday, HPTN 077—a study of CAB-LA in 199 men and women in Brazil, Malawi, South Africa and the US—confirmed the findings of the ÉCLAIR CAB-LA study in men: a bi-monthly set of injections with a 600-mg dose of CAB-LA leads to the blood-drug levels thought to be associated with protection; a three-monthly injection with an 800-mg dose does not. Participants continued to report injection-site reactions as discussed in our blog on long-acting injectables. However, the HPTN 077 findings confirm this strategy is safe and tolerated for men and women. In response to a press conference question on whether there were any sex differences seen in HPTN 077, investigator Raphael Landovitz noted that these studies are trying to better understand any PK differences in women and men. The injections go into a “large muscle belly”, which serves as a reservoir to essentially seed blood plasma over time. What governs the differences in drug levels observed? In ÉCLAIR, body-mass index, or BMI, seemed to be associated. In HTPN 077, researchers noted that the rate at which the drug seeps out of the muscle belly into plasma was 50 percent slower in women than in men (which also made for lower peak concentrations after the same dose). This didn’t seem to be linked to body mass index, per Landovitz. Researchers will learn more about whether this difference has any clinical significance during the Phase III large-scale studies (HPTN 083 and 084) that will look at safety and whether CAB-LA is effective for HIV prevention.

At the AVAC-organized prevention satellite on Sunday, US Global AIDS Ambassador Deborah Birx admonished the audience to work with, and on, the multiple realities of today—delivering what’s available, pursuing new options and seeing today’s daily oral PrEP investments as the foundation for a prevention platform. It’s not a contradiction—it’s a continuum.

We must see the world this way—because it’s the only way towards a conclusive end of the epidemic. As Sibongile Tshabalala said, “AIDS isn’t over!! If the party [for the end of the epidemic] starts now, the end will never come.”

Prevention on the “Slow Track”: What UNAIDS missed in its annual progress report

Last year at the Durban AIDS Conference, many of us donned big round stickers that said “Code Red” for HIV prevention. If you’ve got yours, perhaps on a conference bag or t-shirt, you’ve got the main message we’d like to convey regarding the new UNAIDS report on the state of the HIV epidemic.

code red for HIV prevention sticker image

One year later, we’re in a “code red” situation—with as much cause for alarm as celebration in the UNAIDS report on the global HIV epidemic released this week.

First, the good news: based on higher-quality data, UNAIDS has revised its 2016 estimates for rates of new HIV diagnoses in sub-Saharan Africa. This is great news, as is the overall progress reported towards achieving the 90-90-90 targets, which aim for 90 percent of people living with HIV knowing their status, 90 percent of those people linked to ART, and 90 percent of those individuals on ART achieving virologic suppression. These are essential targets for a rights-based response and sustainable end to the epidemic. This progress must be sustained and accelerated, picking up lessons from innovative, comprehensive service-delivery models like the SEARCH study, highlighted in the report.

Now, the reasons for the red alert. Rhetorically, UNAIDS has abandoned its comprehensive “Fast Track” framework in favor of exclusive emphasis on the 90-90-90 targets. These treatment targets are not enough. UNAIDS is a global thought leader and advocacy partner. Its messages matter. The message in this report—that 90-90-90 targets are the global HIV response—puts the field on the slow track.

mind the gap image

The UNAIDS report is misleading in its top-line messaging. It credits a global decline in incidence to “acceleration of HIV testing and treatment—within a comprehensive approach that includes condoms, voluntary medical male circumcision, pre-exposure prophylaxis (PrEP), and efforts to protect human rights and establish an enabling environment for service delivery”. Yet globally, condom procurement and distribution numbers are dipping (the report gives information on condom usage, but not overall supplies or funding for programming); PrEP access is highly limited; annual VMMC numbers are not on track to reach the UNAIDS Fast Track target of 27 million by 2020 (noted nearly 100 pages into the report); and the human rights of those most at risk are tenuous at best.

The good news is that people living with HIV are accessing treatment, living healthy lives with dignity and that rates of AIDS deaths and new diagnoses are dropping. The bad news is that UNAIDS is providing a misleading picture of the state of all other primary prevention globally. Imagine what the world would look like if the Fast Track targets for VMMC, PrEP and human rights were actually being met.

Bringing epidemic levels of new HIV diagnoses and AIDS deaths to a conclusive, sustainable end depends on seeing the details, not just the big picture. In many sub-Saharan African countries there are twice as many young people as there were at the beginning of the epidemic. The fact that the number of new HIV diagnoses is remaining constant—and even dropping in some age groups, in spite of a growing population, is testament to effective programming.

But, as the report finally acknowledges more than 20 pages in, the world is not on track for reaching key goals in the reduction of new HIV diagnoses. In 2016, new HIV diagnoses among 15- to 24-year-old young women were 44 percent higher than men in the same age group. Global demographics are clear: the total population of young people will continue to rise, as will the percentage of those who are at risk of or diagnosed with HIV.

Current HIV prevention isn’t adequate to prevent new epidemics among the young people—particularly adolescent girls and young women—in this sub-Saharan African “youth wave”. Nor is it adequate for the alarming and unconscionable rise in new diagnoses in east and central Asia, where grossly inadequate harm reduction, TB treatment and human rights frameworks for addressing the epidemic are driving explosive epidemics.

Perhaps the best news is that HIV prevention advocates and activists know what needs to be done and will not give up fighting for it, using the scant references in the UNAIDS report to bolster strong arguments for a truly comprehensive response that includes:

  • Adequate funding and smart programming leading to reliable achievement of ambitious targets (appropriate to the intervention) for VMMC, PrEP and condom promotion.
  • Development and use of prevention cascades and continuums that allow countries to track the quality and impact of primary prevention and harm reduction programs with as much accuracy as their treatment programs.
  • An all-hands-on-deck approach to meeting the prevention needs of the young people of sub-Saharan Africa, particularly girls and young women—as well as their male partners.
  • Investment in and recognition of the need for continued research for new prevention options, including the dapivirine vaginal ring, next-generation PrEP products and a vaccine.

Above all, we need leadership. If that isn’t forthcoming from UNAIDS, we know where it can be found: in the vibrant, energetic and unstoppable HIV prevention movement. We’re on alert and in action! We’ll be bringing these messages to the fore at next week’s IAS 2017 conference in Paris—a key gathering for framing the global conversation; we’ll be working in small groups to develop specific strategies at country and community levels; and we’ll be convening via webinars, in-person gatherings and social media to provide the messages and momentum needed now.

Stay tuned, and join us. Every voice matters, now more than ever.

New Report: Investment trends for HIV prevention and cure R&D

It is said success breeds success. 2016 was a year of encouraging progress, indeed success, on a number of HIV prevention fronts. Two trials of the dapivirine vaginal ring showed efficacy, a spate of new vaccine and antibody trials began, and a trial of long-acting injectable PrEP launched.

Those developments are successes by any measure, and yet this year’s funding report from the Resource Tracking for HIV Prevention Research & Development Working Group (Working Group) shows that prevention funding continues to slowly decline overall. Over the same time, cure research got a big bump from global funders. A separate cure-focused brief from the Working Group, developed in partnership with the International AIDS Society (IAS), showed investment in cure research tripled since 2012.

Global HIV Prevention R&D Investment by Technology Category

Released today, the Working Group’s latest annual report on global investment in biomedical HIV prevention shows that overall funding for HIV prevention research and development (R&D) has fallen to its lowest level in a decade.

The prevention research report notes that funding for preventive vaccine research constituted the bulk of all investments, followed by investments in cure, microbicides, prevention of mother-to child transmission (PMTCT), PrEP, medical male circumcision (VMMC), treatment as prevention (TasP) and female condoms. Over half of the HIV prevention option tracked by the working group experienced a decline. These trends are somewhat reflective of the cyclical nature of large-scale clinical trials—when trials end, funding drops off. Likewise, as some interventions enter full-scale rollout, like PrEP, VMMC and TasP, research in this area can be expected to slow down. Nevertheless, the overall trends bear close watching and strong advocacy to ensure that research continues. The progress of this research in the context of flat funding should not be misconstrued. Flat funding will not get us where we need to go next.

Taking stock of all that’s been accomplished with a decade of flat funding, it’s important to note that two million people continue to be infected each year. To achieve control of the epidemic, the field must also take stock of what could be achieved with the right priorities.

The right products need to be tested in the populations who need them most, and research does not always connect well to the people who are most at risk. The report explores the demographic breakdown of almost 700,000 participants in ongoing HIV prevention trials in 2016, with the majority of these volunteers residing in sub-Saharan Africa, most notably in treatment as prevention trials in Botswana, Uganda, Kenya and South Africa. Only one in eight trial participants in 2016 belonged to a population most affected by HIV, including MSM and transgender women, injection drug users and cisgender women.

An intensifying trend towards a small number of large investors is concerning. Together, the US public sector and the Bill & Melinda Gates Foundation (BMGF) represented 88 percent of the total global investment in 2016, compared to 81 percent in 2015. Simply put, for every dollar spent on HIV prevention R&D in 2016, 88 cents came from just two donors.

On a hopeful note, global investment in research toward an HIV cure increased to US$268 million, a 33 percent increase over 2015 levels, with a number of new funders, and an expanded research portfolio at the US National Institutes of Health. The majority of investments (US$253.2 million) came from the public sector with US$13.8 million invested by philanthropies such as Aids Fonds, amfAR, CANFAR, the Bill and Melinda Gates Foundation, Sidaction and Wellcome Trust.

This is a vigorous period in research and development, reflecting a growing recognition from the global community that research has to be part of the long-term fight to end the HIV epidemic. Now is the time to support continued progress with additional, well-targeted resources.

The Resource Tracking Working Group hopes these reports will serve as tools for advocacy and be used to develop public policy that accelerates scientific progress. We thank all of the individuals who contributed data to the report and who gave time and effort as trial participants.

Check out the report, share it with your fellow advocates, and be sure to let us know if your organization is either a funder or recipient of HIV prevention grants or if you have further questions or information about resource tracking at all!

IAS 2017: A guide to navigating the conference on-site and online

This post contains information on the upcoming IAS 2017 conference taking place July 23–26 in Paris. Read on for details on AVAC satellite sessions, data to watch for, a prevention roadmap and all the ways to follow next week’s developments from the City of Light!

Held every two years, this year’s conference will include results from several HIV prevention trials, including data from HPTN’s Phase II long-acting injectable PrEP trial as well as Janssen’s Phase II vaccine trial, important findings from PrEP clinical trials, initial evidence of impact on confronting the epidemic in Swaziland, and more!

The full conference schedule is available on the conference website, and AVAC has pulled together an HIV prevention roadmap, sortable by timing, intervention and session type (also available as a PDF). The conference organizers have also engaged with partners to create additional roadmaps, which can be viewed here.

We also hope that you’ll mark your calendars for two Sunday satellite sessions that AVAC and partners are organizing:

The Next Wave of Prevention Options: An update and interactive discussion on the pipeline of injections, infusions and implants—who will use, who will deliver, who will pay
Sunday 23 July, 14:45 – 16:45, Maillot Room
(Download flyer)

Join advocates, researchers and implementers, including Ambassador Deborah Birx, in a discussion on HIV prevention R&D, what potential users want from this next wave of prevention options, what’s scientifically feasible, what trials might look like, the development pathways and how to work together to accelerate progress.

Future Perfect: Opportunities and Obstacles for HIV Vaccines
Sunday 23 July, 17:00 – 19:00, Maillot Room
(Download flyer)

This satellite will feature three state-of-the-art presentations on the vaccine pipeline, including passive immunization, promising vector-platforms, and the development of envelope proteins able to elicit broadly neutralizing antibodies. The presentations will be followed by a moderated discussion on the scientific priorities, challenges, and opportunities for next-generation vaccines.

Following on the Web

  • In addition to AVAC’s online commentary on Twitter and Facebook, you can follow the official conference hashtag—#IAS2017.
  • Aidsmap is the official scientific news reporter for IAS 2017 and will be updating its IAS 2017 page with regular news updates—check it out here.
  • FHI 360 is an official media sponsor and will be hosting a digital live coverage hub for IAS 2017 on its Crowd 360 platform.
  • IAS Live debuts this year with IAS 2017 offering access to live streaming of the opening and closing sessions as well as the plenary sessions and press conferences. All session content will be available through the online programme.

Stay tuned for additional updates, and we welcome questions and comments at avac@avac.org!

What’s Up HIV: Supporting young journalists to report on the science and the human face of HIV

At this year’s biennial Southern African AIDS Conference (SAAIDS) in June the media room was buzzing with five young journalists covering the conference, and their mentors from Community Media Trust (CMT), Internews and AVAC. The journalists started every day with an early-morning meeting with guest researchers and advocates who provided background and highlights of the day ahead. With notebooks and recorders in hand they fanned out each day to find their stories.

AVAC has partnered with CMT since 2013 to produce the What’sUpHIV blog to report on HIV conferences in South Africa, but for the first time we provided scholarships to journalists whose sole mission at the conference was to write for the blog.

Together, the five journalists published 25 posts that we are proud to share with you. Don’t miss the personal story from a young woman who uses PrEP, or the reports on controversies around the South African National Aids Council’s (SANAC) new strategic plan, or the provocative piece decrying public attitudes towards women’s vaginas.

These young journalists played a key role in broader coverage of the conference. And we’re not the only ones who think so. Many of their stories were picked up and promoted by AllAfrica.com and by several South African news sources.

To read more news and views from the conference head to whatsuphiv.blogspot.co.za and look for more from these enterprising young journalists in years to come!

Honoring Prudence Mabele – Her light will shine bright forever

We want to take a moment to pause with you and pay our respects to a revolutionary colleague and friend, Prudence Mabele, who passed away on July, 10 2017. AVAC joins advocates across the globe to honor Prudence and her impact on us all.

Pru, as many called her, was a fierce South African activist and leader in the HIV/AIDS, TB and human rights movements and, always, a defender for women’s rights. She was the founder of the Positive Women’s Network and a co-founder of Treatment Action Campaign (TAC) and the National Association of People Living with HIV and AIDS of South Africa (NAPWA). She was part of several other international, regional and national initiatives and, as one of the first South African women to disclose her HIV status in the 1990s, an inspiration to a generation of activists from across the world.

You could not miss Pru, even in the most crowded space, with her wide smile, booming laugh and an authenticity that was always evident. Pru lived her truth. She defended the rights of people living with HIV aggressively and unapologetically. She was the first to the microphone to speak truth; the first to belt out just the right song at the right moment; and she was never afraid to be at the front of the room or protest or podium to call out injustice wherever she saw it.

She was a force of nature and a courageous leader, mentor and activist. The work she did and her fighting spirit will live on in the many people she made a mark on. Prudence was a light that shone bright and her light will stay with the many of us she touched, and those of us privileged to be in her circle and walking along the path she helped to pave.

Go in peace and power, Prudence – we will keep your legacy alive! We extend our heartfelt thoughts and condolences to Prudence’s family, colleagues, friends and loved ones.

Use AVAC Materials? Take Our Survey!

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