Celebrating a New Class of Stakeholder Engagement Experts

AVAC is happy to announce that another class has graduated from the GPP Online Training Course. GPP, or the Good Participatory Practice Guidelines, provide systematic guidance on effective engagement with stakeholders in the design and conduct of biomedical HIV prevention trials.

Two years ago, the first learners of the GPP Online Training Course completed the 12-week program. The online course is a mixed-method approach designed to strengthen the practice of individuals responsible for stakeholder engagement in research. Using an intensive GPP workplan development approach, webinars, and interactive modules with expert facilitators, the course has amplified the benefits of GPP to an increasing number of researchers, advocates and funders.

To date, 120 participants from 16 countries in Africa, Asia, North and South America, and Europe have received GPP certification through the course. The course’s reach has expanded beyond HIV prevention research to additional fields such as TB drug and vaccine development, diabetes, and emerging pathogens like Ebola. While the primary audience for the course remains individuals responsible for planning and implementing community and stakeholder engagement plans at trial sites, we’re experiencing a growing scope of course participants. For instance, civil society representatives have enrolled to build PrEP advocacy plans in their settings. Trial sponsors, including the pharmaceutical industry, also have a growing interest in taking the course to help develop their own models of GPP implementation.

In addition to the benefit of developing a tailored GPP workplan as a result of the course, learners consistently ascribe great value in learning from their peers in the multi-faceted and diverse course cohorts. Once complete, AVAC helps learners stay connected through the Stakeholder Engagement Community of Practice.

As we move into 2017, AVAC hopes to grow the online course to even higher standards and wider audiences! The next course will begin January 2017. To find out more, including how to apply, please email gpponlinecourse@avac.org.

HIV prevention research is going strong, generating new insights and refining the scientific foundations for defeating the virus. It is both an energized and complicated moment in the field, and stakeholder engagement is key to our collective success. AVAC is proud to acknowledge the accomplishments of all the learners who have become certified in GPP over the past two years!

One Thing We Don’t Want to Forget About 2016: AVAC at year’s end

2016 is fast winding down and for many people the thought is: this year can’t be over quickly enough. It’s been a wild one. Human rights and health care seem more imperiled than ever as a result of political changes in many parts of the world, including here in the US where the core AVAC team is located.

But there’s one thing about 2016 that AVAC and our allies can’t and won’t say goodbye to at midnight on December 31—2016 was the year that the world embraced a comprehensive view of HIV prevention. It was the year that many different stakeholders embraced the reality that the end of epidemic levels of HIV depends on scaling up treatment for people living with HIV and prevention for HIV-negative people.

This was an essential breakthrough that really began, at the global level, with the UNAIDS Prevention Gap report released in advance of the International AIDS Conference in Durban; the special prevention issue of Lancet HIV launched at Durban; and continued with thematic activities and publications focused on the World AIDS Day theme, “Hands Up for HIV Prevention”.

After several years of rhetoric suggesting that the epidemic could be turned around solely by scaling up antiretrovirals for people living with HIV, this broad focus was a refreshing dose of reality.

Beginning to end the HIV epidemic is well within our reach, and it is heavily dependent on providing every person living with HIV antiretrovirals when he or she wants them, in programs that support choice and adherence and lead to durable virologic suppression.

In 2016, the conversation changed. Countries, funders and civil society are increasingly in agreement: Real progress also depends on scaling up voluntary medical male circumcision; oral PrEP for people and places with high incidence; harm reduction programs for the world’s exploding epidemics driven by drug use; comprehensive structural, social and biomedical offerings for all populations at risk; male and female condoms; and sustained commitments to R&D for vaccines, microbicides and PrEP—and much more.

We’re as ready as anyone to shut the book on the worst moments of 2016. But 2016 did give us a gift that we’re taking with us—printing it on a banner, a placard, a card to place above our desks: Prevention matters, progress is possible, people working together for their rights and lives will triumph over time.

Put this in your pocket: AVAC’s wallet-sized holiday wish.

On behalf of the whole AVAC team, warm wishes for joyful, restful restorative holidays and a peaceful New Year.

ROAR on Human Rights Day

Saturday, December 10 was Human Rights Day—the annual commemoration of the UN adoption, in 1948, of the Universal Declaration of Human Rights. As frequent readers of this blog know, AVAC isn’t always convinced that “days” for topics or issues can change the world. But we know to our core that human rights—every day—are essential for progress in HIV and every other health issue.

We live and breathe this commitment in all of our programs and projects. And in this update, we highlight some of the work that is happening via our PxROAR program (Prevention Research, Outreach, Advocacy and Representation)—one of the ways that advocates will be fighting for fundamental rights in the months and year to come.

About PxROAR

AVAC’s PxROAR program is a collaborative space for learning and action, focused on frontline advocates. We share information and ideas on HIV prevention research and implementation advocacy through mentorship, peer support, networking opportunities and technical and financial assistance.

PxROAR US in Action: A focus on sex workers’ rights

The original PxROAR cadre, our US allies focus on the range of issues driving HIV and health disparities in America. We come from across the country and focus on issues of racial justice, LGBT rights, women’s sexual and reproductive health and the intersectionality of agendas. For Human Rights Day, ROARer Lindsay Roth provided a rich look at work on sex workers’ rights in action. Lindsay organizes with the Sex Workers Outreach Project-USA, a collective of sex workers and allies committed to ending stigma and violence towards those in the sex trade. Click here to read her blog.

PxROAR Europe

The PxROAR Europe cadre seeks to contribute to European advocacy for research, development and implementation of new HIV preventions, including AIDS vaccines, microbicides, pre-exposure prophylaxis (PrEP) and treatment as prevention. Another focus for the group is tracking EMA licensing processes and advocating for funding for European-based research through the EU’s Financial Framework 2014-2020 and Horizon 2020. ROAR member Nicholas Feustel was recently recognized as the “Father of PrEP activism” in Germany. Click here to meet Nicholas and the other members.

PxROAR Africa: Frontline advocates working to bridge HIV prevention and human rights

Launched in 2016, PxROAR Africa is the newest cadre in the program. PxROAR Africa is focused on supporting work at the intersection of human rights and HIV prevention. Members represent and work with LGBTQI individuals, sex workers and other criminalized and marginalized populations. Through dialogues, shared learning and strategic action, we seek to advance the human right to health, including comprehensive HIV prevention treatment and care. ROAR Africa is co-led by AVAC’s Cindra Feuer and Micheal Ighodaro—whose recent AVAC blog post on sustaining energy in the fight for human rights for LGBT Africans is a must-read. Click here to read the bios of PxROAR Africa members.

PrEP Won’t Protect if it’s Priced Out of Reach

Kenneth is a 2015 AVAC Advocacy Fellow, hosted by HEPS-Uganda. He works 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. He’s currently the head of HEPS-Uganda’s advocacy program, and coordinates the Uganda Coalition for Access to Essential Medicines.

The cost of providing new tools for preventing HIV infections like oral PrEP is concerning. I hear cries about the sky-high prices of these new prevention options all the time. Unfortunately, after the lament, there’s little conversation about reducing these high costs and enabling access. Access is defined by 4 A’s: Affordability, Acceptability, Accessibility and Availability. Lose any one of them and you lose access – and impact – altogether. For anything and everything you ever wanted to know about PrEP, including information about costs as it becomes available, checkout PrEPWatch.org.

Globally, we have 37 million people living with HIV, but only 50 percent of these are enrolled on treatment. That’s despite the landmark study, HPTN 052, that showed early initiation of antiretroviral treatment in people living with HIV with a CD4 count between 350 and 550, not only improved their health but also reduced HIV transmission to HIV-negative partners by 96 percent.

There is a lot of public taxpayer’s money invested in research and development of new tools for preventing, and managing HIV. No doubt, a lot of innovation and brain power goes into the development of these products and I salute that work. But let’s not forget the ultimate goal of an AIDS-free generation. This can only happen if people, irrespective of their location, gender, race, sexual and political orientation, have access to affordable commodities.

The irony is once these products are out, few can afford them.

The latest prevention option, oral PrEP, has been adopted in guidelines, or is in the process of being adopted, by several countries, both middle and low income, as a prevention option for people at substantial risk HIV infection. However, there are already concerns that the cost of PrEP may be a barrier to access, and that’s partly the reason officials are dragging their feet as they consider adding it to their package of prevention.

Pricing PrEP is still underway, but looking at cost for the delivery of antiretrovirals for treatment may give us an idea. A July 2016 analysis of three ART delivery models in Uganda, published in the Journal of the International AIDS Society, showed that it costs $257 (facility-based model), $332 (a combination of community distribution and facility-based model) and $404 (community distribution model) to deliver ART annually per person. Like ART, the expectation is that most people taking PrEP will receive it for free, and if PrEP delivery costs about the same as ART delivery, this could be a big barrier to its access, especially for low income countries and populations at risk. Someone, somewhere, will have to pay, and $257 to $404 per person per year is quite a high cost.

As we prepare to deliver PrEP, we need to mirror the solidarity and teamwork exhibited when these products were developed. A multi-disciplinary collaboration between potential PrEP users, healthcare providers, government and funders should characterize how we make PrEP accessible to everyone who needs it.

In October, I attended the 2016 HIV Research for Prevention (R4P) Conference in Chicago. Being the only conference focused solely on biomedical HIV prevention, I was really looking forward to hearing new ways to address the access issues I highlighted above. Unfortunately, even here there was too little conversation about protecting public health interests over private commercial interests, which hike prices for new HIV prevention tools. I’m excited by the potential of PrEP to drive new infections down, but I worry that if the high cost of its delivery isn’t checked, PrEP may not realize this potential, especially not in the developing countries where it’s needed most.

Getting Set to Defend and Advance Sex Workers’ Rights in 2017 and Beyond

Lindsay Roth, MSSW is a long time community organizer working with people who use drugs and sex workers. Lindsay is now with the Woodhull Freedom Foundation, a Washington-D.C-based NGO that works to affirm sexual freedom as a fundamental human right. She also organizes with the Sex Workers Outreach Project-USA, a collective of sex workers and allies committed to ending stigma and violence towards those in the sex trade.

Everyone’s worried about the dangers that lie ahead. Is there any good news from 2016?

Well, yes. California voters said “No” to Proposition 60 (Prop 60) this past Election Day, a controversial law that, if passed, would regulate the use of condoms in the porn industry. As stakeholders in the fight against HIV, we should celebrate this victory. We recognize the effort behind this proposed law is but one instance in a systemic disenfranchisement of people in the sex trade, both globally and nationally. And all too often, initiatives like this one are backed by NGOs who claim to serve them but actually do more than good.

In the case of Prop 60, the AIDS Healthcare Foundation (AHF), under the leadership of Michael Weinstein, poured millions of dollars into lobbying for the proposed law, which would have undermined health, safety and self-determination of porn performers. And Weinstein has funded other anti-sex initiatives. In 2012, AHF funded the campaign for Measure B, which called for mandated condom use and eye protection (e.g., goggles—yes, goggles) to protect from bodily fluids on set. California’s Prop 60 would have gone further, encouraging costly and invasive lawsuits against anyone financially tied to a porn production if the condom rule was violated. Weinstein’s work is driven by sex-negative values, and a blatant disregard of science, and other NGOs claiming to serve the interests of sex workers are just as suspect.

Instead of legislating, mandating and criminalizing people over condom use, sex workers need strong worker rights. They need respect and they need access to healthcare. Real HIV prevention depends on sex workers being able to access a range of options from PrEP and condoms to testing and treatment. With that access sex workers can fully protect their health and their human rights.

Stigma against sex work is at the heart of anti-sex worker legislation like Prop 60, Measure B and other problematic legislation that not only makes sex work more dangerous, but drives funding and attention from one of the key drivers of the global HIV crisis: economic inequality. Instead, laws like Prop 60 keep coming.

Prop 60 is a variation on an old theme. It basically expanded on Measure B for all porn production in California, which was voted down by Occupational Safety and Health Standards Board after protests by adult film performers. Prop 60 went beyond mandatory condoms and eye protection and has a number of statutes that put individuals at risk. The sex worker-led site, Free Speech Coalition, articulates the dangers of Prop 60 in detail.

In short, Prop 60 mandated that condoms are visible in every scene of pornographic films made in California—even homemade movies. It would have given all California citizens the ability to sue anyone who has a “financial interest” in the film if the condom rule is violated. Pro-Prop 60 campaigners said this would have held producers accountable for dangerous working conditions for performers, however activists worried this vague language would make performers, especially independent performers who often are also producers, vulnerable to expensive and invasive lawsuits. Prop 60 would have incentivized lawsuits by allowing civilians to profit from them, and made public the legal names and personal information of porn actors in the process of conducting those suits. Additionally, state employees from the Occupation Safety and Health Administration (OSHA) would be paid to watch porn films and ensure condoms are being used. Beyond continuing an anti-sex, anti-worker campaign, this bill, authored under Weinstein’s direction, included a clause requiring the state of California to hire Weinstein to take over enforcement efforts if he determined state efforts were insufficient.

Regulation of the pornography industry is one issue—what are some others?

Michael Weinstein and AHF are but one example of seemingly infinite attacks on the work, lives and safety of sex workers under the guise of helping them. I confronted this often as the Director of Project SAFE in Philadelphia, a peer-led harm reduction organization that provided direct services to women working in underground economies. We worked with the Coalition of Labor Union Women to fight PA HB262, a bill that would mandate a registry of exotic dancers including their eye color, tattoos, home address and personal history of victimization. The work of Project SAFE and many other sex worker-led organizations remains underfunded, as the struggle for the basic human rights, health and safety of people in the sex trade is so often dominated by a “Rescue Industry” that neither understands nor respects our lives and labor.

The “rescue industry” generates hysteria, pulls money from sex worker advocacy and increases HIV risk

Local Republican leadership worked with the Pennsylvania Family Institute, a Christian organization that fights for “traditional” marriage, to create HB262. They claimed it was an effort to “fight human trafficking” as well as reduce HIV and other health risks for exotic dancers. There is no evidence that registries can accomplish any of these goals. But they do put sex workers at greater risk of experiencing violence and exploitation by exposing personal information of a stigmatized workforce. The publication of sex workers’ personal information has led to stalking and “outing,” such as in Seattle, where exotic dancers brought legal action to stop a local court from releasing information to serial offender, Robert Hill. Porn performers in California worried the same would happen to them.

How do these US issues relate to global developments?

Legislation like this laws described above is typical of a global trend. “Anti-trafficking” organizations pressure governments to pass laws that make sex work more dangerous, often in the name protecting people in the sex trade, including victims of human trafficking. The “rescue industry” includes professionals, policy makers, religious leaders and advocates who seek to abolish the sex industry by regulating or criminalizing it out of existence. Most notoriously, the Somaly Mam Foundation, like AHF, used lies to generate hysteria and significant income for its founder, Somaly Mam. Watch-dog groups and journalists have investigated Somaly Mam for an array of abuses including misidentifying sex workers as victims of trafficking, and receiving big sums from donors while doing very little to empower sex workers to lead free and independent lives.

Indeed, saving sex workers, voluntary or trafficked, has become a cause célèbre. But the “rescue industry” often creates more chaos, suffering and stigma for sex workers. The recent proliferation of anti-sex worker organizations has displaced successful sex worker-led programming and interrupted efforts in HIV treatment and prevention, among other important initiatives. For instance, the Young Women’s Empowerment Project in Chicago, a direct service and anti-violence organization for youth of color with ties to the sex trade, lost critical funding to the misleading “end demand” campaigns. “End-demand” campaigns lobby to increase criminal charges for people accused of patronizing sex workers (catchphrases include “no demand, no supply”. Advocates for sex worker rights oppose this type of legislation.

Researchers at DePaul University in Chicago found that end-demand legislation empowered law enforcement to disproportionately profile and arrest Black and Latino men. They also found transgender women accounted for an alarming 10 percent of all arrests during this campaign, suggesting sex sellers were misidentified as sex buyers. Transgender women had their photos, government names and home addresses published in local newspapers as a part of a “John” shaming campaign. This tactic is humiliating and disruptive to anyone’s life, especially transgender women, who are disproportionately the target of violent crimes.

Certain funding policies from the US President’s Emergency Plan For AIDS Relief (PEPFAR) provide yet another example of anti-sex work policies driving funding away from sex workers’ self-advocacy. Despite being found unconstitutional by the US Supreme Court, the Anti-Prostitution Loyalty Oath, established in 2003, forces global recipients of PEPFAR funding to actively oppose prostitution. Efforts to criminalize sex work contradict recommendations from the World Health Organization, the World Bank, the Lancet, Amnesty International and many others, which call for the decriminalization of sex work as fundamental to the human rights of sex workers and instrumental to decreasing the transmission of HIV.

How can HIV Prevention and Sex Worker advocates work as allies?

Sex workers are stakeholders in the fight to end HIV

There is little data about sex workers and HIV in the United States. Transactional sex continues to be excluded from the National HIV/AIDS Strategy, a point that has been protested by activists, as this lack of visibility implies that sex workers are not considered stakeholders in national efforts to end HIV.

In low- and middle-income countries we have more data: sex workers are at elevated risk. HIV prevalence is estimated to be 12 percent of all sex workers – with variations among countries and regions. In several Sub-Sahara African countries, prevalence is as high as 37 percent. Where rates of HIV among sex workers is especially high, only 60 percent have received an HIV test in the past 12 months. In addition, sex workers report difficulties accessing condoms and lubricant, and report other unmet health needs in over 165 countries as a result of criminal laws and/or stigma against them and their work.

Alongside these figures, let us remember that sex work, like all work, is motivated by economic need. The struggle to make sex work safer should not be about mandatory condoms, registries or client-shaming; rather it should address the unequal distribution of wealth in the United States and globally in which so many individuals, especially women, have limited choices for survival.

Stop the stigma—let’s fix the real problems

Wealth inequality, punitive laws and access to health care are but a few of the issues that influence HIV-exposure and other risks that sex workers face. Efforts to end HIV would be far more effective if sex workers were empowered to keep themselves safe, instead of being criminalized, harassed and further isolated from prevention methods or other health care services.

It seems that just about anyone will be entrusted with the safety of sex workers—except sex workers themselves.

We must stay vigilant about the rights of all people in the sex trade. How are sex workers included or excluded in your work? Learn how to be an ally to sex workers here. Consider including sex worker-led organizations in your holiday giving. Only through solidarity can we neutralize the harm of people like Michael Weinstein—and continue to stand up to those who attack the work and the lives of people in the sex trade.

Don’t Give Up: Human Rights Day 2016

Once the eye has seen and the ear has heard, you can no longer pretend to be uninvolved or unaffected.

My grandma used to teach me when I was young, as I would follow her to town hall meetings in our little town Uzebu in Benin city, Edo State, Nigeria. At those meetings, she always spoke out against injustice to district members. She fought for the freedom of Edo women and argued against the idea that women would have to cut their hair for the sake of mourning their dead husbands. She also fought for the rights of poor people to live and survive, rallying the community against the unnecessarily high price of goods and services like the sale of palm oil, cassava flower or a bag of rice.

When I was still very young, my grandmother instilled within me the notion that, as a human being, I am morally obligated to use my voice to speak out for those who cannot speak for themselves. My grandmother showed by example that if I witnessed evil or wrong-doing or injustice in our world, I needed to act. In the years that have followed, my personal experience with the world has kept this lesson close. But this year I have had to dig deeper than ever to try to understand what my grandmother thought and meant. I’ve done this to find motivation for why I shouldn’t give up.

That’s what I am thinking about this Human Rights Day: why we can’t and shouldn’t give up. It isn’t a rhetorical question. This year has been very long and heartbreaking. I believe for most people in my close circle of friends it’s been that year you just can’t wait to get over with!

It helps me to think of the good news that did come in 2016 for human rights defenders. For example, early in the year the UN General assembly voted on a resolution to appoint the first UN independent LGBTI expert. The Human Rights Council resolution established the LGBT expert by a vote of 23-18 with 6 abstentions, reflecting the deep divisions internationally on gay rights.

In my local level, I witnessed achievements in the area of HIV prevention for Gay men in Africa. This year, AVAC worked with several other organizations to convene the first ever consultation on PrEP for gay men in Africa. (Yes, there was consensus at the outset of the meeting to use the term “gay men”, rather than MSM, and also to be clear that we were not addressing the specific needs of transwomen, an urgent and separate agenda.)

We’ve all been to so many meetings that this can sound less important than it was. Anyone who was there knows that it was the beginning of something new and different! We brought together about 100 community members and donors to engage in a dialogue about oral PrEP. There was tremendous energy and enthusiasm for this prevention tool. Since that meeting, participants from Kenya, Uganda and Zambia have launched advocacy strategies to raise awareness and advance PrEP access for LGBTQ individuals—and all who need it.

PEPFAR announced a $100 million Key Population Investment Fund to scale up high-quality, key-population-led community approaches to HIV/AIDS prevention, care and treatment programs. Also announced this year was the Elton John AIDS Foundation’s $10 million fund to fight discrimination and violence against LGBTI people. The announcement of both these funds was a noteworthy highpoint in 2016.

Then, in the weeks after the US election, when so many of us were feeling afraid, angry, activated or paralyzed, I traveled to the ILGA Conference in Bangkok. I thought of this trip as a human rights journey to bear witness: to follow my grandmother’s teachings. I went to see with my own eyes and to hear with my own ears the powerfully moving stories and struggles of so many LGBTI persons around the world.

I met with people from a number of human rights organizations, to listen and to figure out how we can best accompany each other on journeys toward justice—these journeys of perseverance, of truth, of finding humanity in the face of great difficulty.

I went to witness the discrimination that women and girls face from societies that value “macho” culture, where gender-based violence is the “norm” and goes unpunished. I went to hear testimony from the members of LGBTQ community about how the world views same-sex love and sexuality and how the worst of these views, combined with the macho culture, drive hatred and gross miscarriages of justice toward the LGBTQ population.

What I saw in Bangkok at that meeting is what I saw throughout so much of this year in travels and at home. Despite whatever is happening on political, social or economic levels in the countries and communities I have been able to visit or connect with this year, the LGBTQ communities include strong, bold activists with bright smiles. They show a resiliency of spirit and attitude that say: “Notice me! I am here! I am not going away. You can try to take away my identity, my rights, but you cannot break me and I WILL get noticed!”

These bright smiles do not remove the suffering, nor the great discrepancy between the “haves” and “have-nots”: those who are born white or born black, those who are HIV positive and those who are HIV negative. But their faces remind me that people are strong. That people survive. That despite facing incredible hardships and assaults on their dignity, LGBTQ people and so many others are never going to stop standing up, taking risks, acting in solidarity, and fighting for systemic change, basic rights and human dignity of all people.

Through the year while I traveled around the world, I listened and witnessed. My senses were on overdrive during this entire year–both my physical senses and my sense of the soul: my heart and my mind. What I physically touched, smelled, tasted, saw and heard moved my heart, touched my spirit and deeply stirred my soul. And by being open to what was most difficult, I found the strength to not give up.

We are going to need this strength even more going forward. The activists that I have met this year or known for many years—including two dear friends who died this year—are wading deeply into the dangerous waters of our time. They do so knowing and hoping that they must be the agents of change, one small step at a time. We all must walk together, alongside one another in the depths and strong currents. If we do this together, it will be possible to get safely to the other side. This Human Rights Day, I hope we touch the hands of every activist or LGBTQ person we know, understanding that this physical touch will also touch our hearts and minds—and move us to witness and action.

Funding opportunity announcement: Development of multipurpose prevention technologies: a strategy for the prevention of sexually transmitted infections

Purpose: To solicit bi-phasic research applications to support translational research focused on development of Multipurpose Prevention Technologies (MPTs) for prevention of STIs, HIV, and/or unintended pregnancy. Further information at: https://grants.nih.gov/grants/guide/rfa-files/RFA-AI-16-085.html.

To Be PrEP-ared for the Future, We Must Learn from the Past

Simon K’Ondiek is a 2011 AVAC Advocacy Fellow, hosted by the Nyanza Reproductive Health Society in Kisumu, Kenya. He is an HIV prevention research advocate with vast experience in the mobilization of communities to effectively engage with HIV prevention research and educating these communities on clinical trials around them.

Five years ago, I was an AVAC Advocacy Fellow. At the time, voluntary medical male circumcision (VMMC) was just beginning to be rolled out in sub-Saharan Africa. Kenya, where I live, was out in front of many other countries but even then, there were problems and challenges—getting information out about what the intervention did and didn’t do, encouraging adult men to take up the procedure, fostering support from female partners, spreading the word, persuading traditional leaders to take it up—I spent my fellowship working on these things. The year culminated in a documentary photography series, exploring themes centered on the knowledge, attitudes, communication and behavioral intentions of young men and women as VMMC rolled out in Nyanza Province. I also built an advocacy task force to work in the province and monitor the rollout.

All of that work was triggered by a joint recommendation in 2007 from the World Health Organization (WHO) and UNAIDS. It called for the adoption of VMMC as an additional strategy for HIV prevention in priority countries. A subsequent document, Joint Strategic Action Framework to Accelerate the Scale-Up of Voluntary Medical Male Circumcision for HIV Prevention in Eastern and Southern Africa, identified key success factors for VMMC. These include leadership and governance. Steadfast political support, if sustained through the entire process of implementation, results in much greater uptake. Engaging national champions (such as Prime Minister Raila Odinga who became one of the key faces of VMMC in the region), developing national policy and operational plans, and designating a spokesperson for the national program helped bolster VMMC uptake in Kenya. I focused on community-level work and can say from first-hand experience that rollout without comprehensive community engagement beforehand almost brought VMMC to its knees. Few men showed up at clinics to be circumcised, and local leaders balked at the idea of circumcision, considering it a foreign intrusion. Something had to change to address these and other challenges. And when communities and traditional leaders were more meaningfully engaged, the pace of rollout intensified.

So much of what I did in that fellowship is applicable today—especially when it comes to PrEP. Here is what I wish everybody knew, and would carry forward as they plan for the kind of comprehensive engagement that made VMMC a reality in Kenya.

For PrEP to be effective community-wide, it will take strong leaders, resources, and the engagement of multiple stakeholders, including health service providers, clinic by clinic. Pre-exposure prophylaxis, or PrEP, for HIV prevention involves the use of antiretroviral medications, known as ARVs, to reduce the risk of infection in HIV negative people. Oral PrEP uses a two-in-one antiretroviral (ARV) pill, containing the ARVs tenofovir and emtricitabine under the brand name Truvada. These ARVs were originally developed to treat people who have already acquired the virus. As a pill taken as HIV prevention, several trials have found PrEP to be safe and effective if taken correctly.

PrEP implementation shares similarities with other sexual and reproductive health products being implemented across sub-Saharan Africa. Contraceptives, like PrEP, are also safe and very effective if used. Adherence in both cases is essential. PrEP is highly protective for both men and women. Similarly, a condom also protects both men and women from contracting sexually transmitted diseases (STIs) and prevents unintended pregnancies. Voluntary medical male circumcision (VMMC), PrEP, condom use and other safe sex practices represent a range of options that can be used in combination and tailored to individual needs.

Numerous demonstration projects aim to establish the benefit of PrEP in the real world, outside the controlled environment of a clinical trial. As access expands, oral PrEP will surely face several challenges.

One example, a lack of awareness of available options, and lack of access to services adversely impacts the health of women, and children too. For PrEP implementation to be effective, administrators must overcome a similar lack of awareness and create access for those most vulnerable to HIV. Key populations need to know it’s available and effective. These groups, including sex workers, adolescent girls and young women, men who have sex with men (MSM) and discordant couples, must be engaged.

Consider this: in places where family planning needs are great, common explanations given for not using family planning methods include health concerns, side effects, poor access to products and services, partner reluctance and prohibitive costs. In some place, family planning challenges have been overcome by integrating HIV treatment and maternal and child health (MCH) services, training healthcare workers, engaging male partners, and continually building awareness of the availability of family planning services through TV and radio to reach a wider community.

It’s also important to note two other factors shaping local context: poor attitudes among health care workers hold back the uptake of family planning services, especially for adolescents and young women. And the involvement of men in family planning plays an important role, as women in many developing countries are not empowered to take family planning decisions on their own.

Therefore, successful PrEP implementation at the community level depends upon engaging those most vulnerable to HIV, and address these real-world challenges. They need to be aware of the availability, the side effects, the benefits. Unforeseen obstacles must be addressed as they arise to ensure successful rollout and uptake.

At the national level, we must operationalize PrEP guidelines and work with politicians to secure political will for a sustained delivery model. Well-coordinated community education and literacy programs are needed at the outset to explain PrEP and identify challenges such as stigma and the under-use of reproductive health services.

Government campaigns on TV, radio and posters, with support from local NGOs and local opinion leaders, should be considered. Such campaigns increase knowledge of PrEP, and influence social and cultural attitudes. Health care workers must be trained and provided with materials on PrEP as prevention, and their training must be integrated with reproductive health services to reach women and speed the delivery of PrEP to everyone who needs it.

As Kenya again leads in HIV prevention, this time with PrEP, we cannot repeat the mistakes of the past, which seriously hampered the roll out of VMMC. The potential public health benefits are enormous. There must be a pragmatic approach of integrating existing HIV prevention efforts, especially PrEP, into broader sexual reproductive health services. Overall, increasing PrEP access and acceptance requires effort to make sure those most vulnerable to HIV—including adolescents, sex workers and MSM learn about PrEP and can get it in a safe, culturally sensitive and cost-effective manner.

World AIDS Day: What We’re Grateful For

Every year on World AIDS Day, December 1, we pause to take stock. We take stock of how much energy goes into “days” that note this issue or that one—and of how little attention HIV gets, relative to its ongoing impact in so much of the world, on other days. This year, many of us will also be considering how to move forward in a world where acceptance, equality and a commitment to human rights are under threat.

Here is what we know: we need to work together. We need to remain steadfast. And we need to take note of the things that we are grateful for. On this World AIDS Day, AVAC is drawing strength, as we always do, from our partners and from these issues, individuals and developments that shine light on the road ahead:

1) Launch of the HVTN 702 HIV vaccine trial – Earlier this week, the first participant enrolled in HVTN 702, the largest HIV vaccine trial ever to take place in South Africa, and the only vaccine efficacy trial currently taking place worldwide. HVTN 702 will test the safety and efficacy of an HIV vaccine strategy based on the combination evaluated in the RV144 trial, which took place in Thailand and reported results in 2009. RV144 found modest benefit using a two-vaccine combination. This has been updated and adapted for the genetic variants of HIV circulating in Southern Africa. The efficacy trial, which is scheduled to run through 2020, is just one important milestone in the larger HIV vaccine research and development agenda. Gratitude, encouragement and thanks to volunteers and trial staff!

2) A step forward in HIV prevention for women – This week’s New England Journal of Medicine includes the final results of the International Partnership for Microbicide’s Ring Study, which evaluated the safety and efficacy of the dapivirine vaginal ring. These results (first presented at CROI back in February) stand alongside the ASPIRE results (which also evaluated the dapivirine ring) to show that the ring is safe and partially protective. There is still much to understand from both of these studies and additional work that is ongoing and planned, as nicely summarized by Adaora Adimora in her accompanying editorial, Preventing HIV Among Women: A Step Forward, but Much Farther to Go. The results, commentary and a NEJM video summarizing results from both trials are all online.

3) UNAIDS’ timely and urgent prevention-focused resources developed for World AIDS Day – For the past several years, AVAC and other prevention advocates have urged UNAIDS to shine a light on the yawning gaps in funding and strategy for comprehensive HIV prevention. Starting with its Prevention Gap report—released in July 2016—the agency has taken this issue on. The materials released for World AIDS Day include print materials, prevention-focused stories and an investment update. The update outlines age and population-specific gaps and quantifies the funding needs.

4) Dynamic civil society engagement with clinical trial conductGilead’s Phase III trial (known as DISCOVER) of the drug F/TAF for oral PrEP has raised concerns among advocates that stakeholder engagement has been insufficient. The study plans to enroll 5,000 participants from 92 sites across the US and Europe. Participants will be randomized to receive either daily TDF/FTC (Truvada), which is a proven prevention option approved by the US FDA for PrEP in 2012, or daily F/TAF, which is a different version of the drug combination that has been approved for treatment but the efficacy for prevention is unproven.

Given the complex messaging of this trial—one that compares an approved option with an experimental one—community engagement over the course of trial planning and execution is imperative. A group of advocates, representing a range of organizations, submitted a public letter to Gilead on November 16 demanding substantial and meaningful improvements to the process of stakeholder engagement, as outlined in the Good Participatory Practice Guidelines. This is the right thing to do and history has shown this process improves the chances for the trial’s success.

5) Uncompromising AIDS activism and advocacy – In the United States, the presidential election has raised major concerns about the full range of issues affecting the domestic and international HIV response. Will research continue to be funded? Will healthcare be extended to all who need it, and will communities respond with love and action to outbreaks of hate and discrimination? Will overseas programs continue to be strategic and sufficiently funded? Nothing can be taken for granted. We are grateful to our allies in the US and abroad who are committed to fighting for what is right, just and sound public health. The Federal AIDS Policy Partnership and the Global AIDS Policy Partnership, along with the Congressional HIV/AIDS Caucus, are hosting a Congressional reception in recognition of World AIDS Day. Health GAP and other activists are planning an event on the Capitol Hill lawn to demand Speaker of the House Paul Ryan and the Republican Congress preserve funding that supports global health programming and the Affordable Care Act. More info here.

6) The life and legacy of Jacobus Witbooi – Jacobus Witbooi, coordinator of Pan African ILGA, died in late November, leaving a community in mourning and a remarkable legacy as a human rights defender. In his work for Pan African ILGA and in a wide array of other roles, Jacobus sought with strength and joy to ensure that LGBT rights were viewed as human rights at community, national and international levels. He was a member of AVAC’s PxROAR Africa program where he helped define strategies for integrating biomedical HIV prevention and human rights agendas. He was a beautiful soul, inside and out, a great friend and an inspiration to us all. We are grateful for having known him, even as we grieve his untimely loss.

Together, we’ve accomplished so much, but we have so much more to do. We hope you’ll continue to fight alongside us. Not just on World AIDS Day, but every day.