Groundbreaking New WHO Guidelines on ART and PrEP

UPDATE: Slides and audio from the webinar mentioned below are now available. Click here.

WHO today issued an “Early Release Guideline” on when to start antiretroviral therapy and on pre-exposure prophylaxis (PrEP) for HIV. This document recommends 1) initiation of ART in adults living with HIV, regardless of CD4 cell count, and 2) offer of PrEP as a prevention option to all people at substantial risk of acquiring HIV. (The release is “early” relative to a comprehensive update of its consolidated ARV guidelines, slated to come out at the end of the year.)

If implemented, these sweeping recommendations have the potential to change the world by simplifying ART for people living with HIV and revolutionizing prevention for people at risk. So it is, first, a moment for some celebration. At AVAC, we can’t think of another time in the history of the epidemic when there has been a simultaneous game-changing shift on two fronts—prevention and treatment. Of course, the boundaries are blurred—effective ART in people living with HIV also reduces the chances that they will pass on the virus, so it is a prevention innovation, too. Now the real work begins: figuring out how to bring the blurred boundaries into sharp clarity in comprehensive national plans and global strategies.

As we celebrate, we also note the great work that lies ahead to ensure that these guidelines are turned into practice. There are funding and logistics hurdles, and there are also major information gaps. PrEP-awareness is growing, but there are still plenty of questions—see below for links to some key resources. And ART “on demand” is a wholly new concept in many parts of the world where people were told to wait until they were sick or approaching low CD4 cell counts to begin.

The work of answering these questions with smart implementation, rapid data collection and analysis, and expanded funding for civil society-led service delivery and advocacy is great work indeed. And we can’t wait to get started!

To get the conversation going, here are a few key points from an initial read of the document, as well as some additional background resources related to daily oral PrEP and the new guideline.

In addition, join advocates on a global webinar with representatives from WHO to hear more and ask questions on Monday, October 5:

Guidelines overall:

  • The document lays out four principles that should underpin implementation efforts. One that civil society will need to ensure is enacted is: “Implementation of the guideline needs to be accompanied by efforts to promote and protect the human rights of people in need of HIV services, including by ensuring informed consent, preventing stigma and discrimination in the provision of services and promoting gender equity.” (Click here for more on the barriers and facilitators to women’s access to ART.)

Immediate initiation of ART:

  • The guideline calculates that, if implemented, immediate initiation of ART would increase the number of people living with HIV eligible for treatment by up to 35 percent.
  • Throughout the discussion of on-demand ART—which is broken down by age groups, but not disaggregated by gender or other identity—there is recognition of knowledge gaps in how to deliver ART on demand. The guideline refers to qualitative research with people living with HIV and a literature review highlighting messages about how early ART can reduce mortality risk, compared to waiting until CD4 thresholds from former guidance.
  • The guideline contains a bit of a mixed message regarding CD4 cell count versus viral load. Noting that “it may be reasonable to reduce or stop CD4,” the document also says that CD4 has an important role to play in many contexts.

PrEP:

  • The recommendation of PrEP for all people at substantial risk expands prior WHO guidance focusing on men who have sex with men and serodiscordant couples. Importantly, it vastly expands the likelihood that oral PrEP will be offered to adolescents and young women. As it is the first intervention that women can use discretely—not at the time of sex—this is a potentially profound development, and one that can lay the groundwork for other tools in the pipeline, such as the vaginal dapivirine ring, which is in trials, with data expected in early 2016.
  • But what does substantial risk mean? Well, WHO will tell you—it means living in a context or community where the background incidence (number of new cases of HIV per year) is 3 percent. This doesn’t mean the overall incidence in your country has to be 3 percent—but that this is the estimated or documented rate in a context like serodiscordant couple-hood, being a man who has sex with men, a person in prison, a sex worker, an adolescent girl. The reason it’s phrased this way, WHO says, is to allow offer of PrEP “based on individual assessment, versus risk group.” WHO also notes that there are times when PrEP should be offered at a lower incidence, too.

Some more resources:

TB and HIV Join Together for Combined Community Engagement Forum

Stacey Hannah and Jessica Handibode are AVAC staff members.

We sang. We danced. We shared our experiences, and we learned from each other. Most importantly, we strategized as equals about how to promote the work of community engagement in clinical trials. And for the first time, engagement implementers from both TB and HIV research fields convened in one room, in one workshop, to address tactically the strengths and weaknesses of participatory practice.

The Combined Community Engagement Forum, the first forum of its kind, took place September 27-29 in Johannesburg as a joint effort between AVAC, IAVI and TB Alliance. This was not your average community engagers’ workshop. It was a venue to learn new tactics across fields, to openly voice challenges and for the group of over 80 to plan next steps for making engagement work more robust, including efforts like publication and monitoring and evaluation. Kagisho Baepanye of the Aurum Institute in South Africa said, “This year’s forum took stakeholder engagement to another level and pushed community educators to think deeper and step up to be counted.”

More and more, there is agreement that stakeholder engagement is critical to the clinical trials process. It doesn’t, however, get the recognition or support it needs, nor has it necessarily produced strong evidence of impact on research or communities. By collaborating across fields, across sites, across research networks and with advocacy organizations, the Combined Community Engagement Forum served as a step forward in building a stronger, more strategic and more clearly understood community of participatory and stakeholder engagement practice.

To learn more and to get linked into the virtual Stakeholder Engagement Community of Practice, please email gpp@avac.org.

Health Journalists Link Up with Scientists at Science Cafés

In Health Journalists link up with Scientists at Science Cafés, Ugandan freelance science journalist and trainer, Esther Nakkazi, reflects on her experience of executing “media science cafés” – a innovative project aimed at bringing science closer to journalists, and journalists closer to scientists and other key stakeholders involved in health and health research, advocacy and delivery, such as government officials, civil society, program implementers and others. Esther’s organization, Health Journalists Network in Uganda (HEJNU) is implementing this project in collaboration with AVAC. AVAC is partnering with partners in Zambia and Zimbabwe on similar projects. In her piece, Esther reflects on what this project is, their “wins and whines”, and provides insights of some of the benefactors of this project.

Once every month, health journalists in Uganda attend a Science Café. It is usually held on a Wednesday from 3-5 pm, a day and time largely selected by them.

The Health Journalists Network in Uganda (HEJNU), an independent, non-profit organization dedicated to increasing understanding of health care issues and improving health literacy among Africans organises the Science Cafés in partnership with AVAC, a global non-profit organisation that works to accelerate the ethical development and global delivery of HIV prevention options.

Generally, Science Cafés present a platform for unique public engagement on issues that may be rather isolated from the general public including journalists.

“This is a very impressive innovation and it is good to know that journalists are interested in what is going on in research,” said Francis Kiweewa, the head of research and scientific affairs, Makerere University Walter Reed Project (MUWRP).

Kiweewa was the scientist featured at the fifth Science Café that discussed HIV ‘Cure’ at the HEJNU home in Ntinda alongside journalist Hilary Bainemigisha, the editor at the leading daily newspaper The New Vision.

“The science cafe concept is spot on in the way it mobilises science writers, keeps us in touch with each other as we share updates for our improvement of skills in writing science,” said Bainemigisha.

We hold them in an informal setting and keep the numbers small ranging from 20 to 25 people, which allows for more in-depth interaction and absorption of the topics discussed, said freelance science journalist and the head of HEJNU, Esther Nakkazi.

“I was very free wearing sneakers. I liked the free environment, any body can shoot any question any time,” said Dr. Salim Wakabi a senior researcher at MUWRP who was featured at the fourth Science Café that discussed vaccines.

“Chances of impact are greater when people see their opinions and participation being valued during the sessions. We believe the speakers divulge more in-depth information and thorough explanations because of the small groups and in such a setting,” said Nakkazi.

On a typical day, at the monthly HEJNU Science Cafés, two young journalists employed at media houses elsewhere come over and clean the chairs, set up tents and make sure drinks and stationery are available. They are also responsible for mobilising the journalists.

That makes the Cafés extremely cheap since there is no money spent on the venue in a posh hotel or building. But that also means that the rain can stop a Café from happening but so far that has not happened, said Nakkazi.



Dr. Barbra Marjorie Nanteza and Marion Natukunda at a Café.

Wilfred Ssenyange, working with the national broadcaster, Uganda Broadcasting Service (UBC) makes sure genuine journalists are invited and they have to confirm attendance with him.

He said he knows that the numbers have to be kept small and so warns them not to come along with friends who have not been invited, a practice that is so common among Ugandan journalists.

Jael Namiganda, a journalist with Metro FM, ensures that the journalists register and that they are comfortable. But also follows up on the stories produced.

She says its good training for her and hopes to become a prominent science journalist. The two only graduated in 2014 and they are referred as ‘HEJNU interns’ which they protest.

“To measure the impact, we provide a detailed report to our sponsors from the sessions,” said Evelyn Lirri, a journalist and the deputy at HEJNU who writes out the reports. These entail the discussions and the stories that are published out of the Science Cafés.

“We love that the journalists can write stories from the Science Café but we do emphasise that we are more interested in them learning. So actually, when you observe, most of them are listening to the speakers instead of the rush mood when they have to produce a story,” said Lirri.

At the Science Café there are usually two speakers either a researcher or scientist, and someone from civil society. Discussions are fluid and interactive through how the speaker engages with the audience in a casual manner.

Angelo Kaggwa-Katumba, a program manager at the AVAC office based in New York helps with choosing the topics and invitations for speakers.

“It has been excellent,” said Kenneth Mwehonge from HEPS Uganda, civil society organisation. “Sharing information on on-going biomedical HIV prevention research with journalists is integral in having a successful role out of new prevention technologies.”

Nakkazi explained that so far, the Science Cafés are only about HIV prevention but they will soon expand to other areas and cover a bigger geographical area beyond Kampala so that other journalists benefit.

She said these offer journalists an opportunity where many would never otherwise interact with some of the guest speakers on such an informal yet personal level as well as generate story ideas, critique work and engage in thought provoking debate.

“The informal setting of the Science Cafés works well because it reduces the distance between the speakers and the journalists. This particular setting makes it easier to freely ask questions and have a discussion,” said Rosanne Anholt a research intern at Athena Institute and HEJNU for a Masters in International Public Health, VU University Amsterdam, the Netherlands.

When Dr. Barbara Marjorie Nanteza the National Safe Male Circumcision (SMC) Coordinator at the AIDS Control Program, Ministry of Health, Uganda was invited to speak to journalists at the 3rd Science Café on Safe Male Circumcision, she first expressed how she was not happy about the media reporting on the topic.

But after the Science Café and the media coverage that followed from it, she sent the HEJNU secretariat a message saying she had heard on radio what the journalists had aired and it was good.

“I would like to thank you for the chance you offered me to talk to the journalists about SMC programme in Uganda. I am really happy about the media awareness by the respective journalists… and if they ever want to hear from me again, just let me know in advance, said Dr. Nanteza.

“Over time, the quality of questions at the Science Café, the sharing of story ideas, peer criticism and final output in the different media houses is improving,” Bainemigisha who edits the Saturday New Vision paper observed. “Writers now have easier access to sources they have met at cafes which eases work.”

Although it is a good innovation it still needs some improvement. For instance, Anholt thought that for two Science Cafés she attended (on male circumcision and HIV vaccine research), the way the topics were discussed remained very (bio) medical without adding a social aspect.

“By social aspects I mean, what are the social issues around male circumcision? Are there any cultural practices or beliefs that interfere with circumcision campaigns? Are there any misconceptions that need addressing?,” said Anholt.

She said that adding the political, economic and cultural context, which could be achieved by the same speaker or having an additional speaker would be valuable and add to journalists’ in-depth understanding of HIV.

Nakkazi said the Science Cafés are also meant to promote a culture of scientists sharing their findings outside of the scientific community in a relaxed setting and prepare the media for research studies results.

At one of the Cafés they have featured Dr. Clemensia Nakabiito a lead researcher in the ASPIRE study who talked about the vaginal ring as an HIV prevention tool for women. Although journalists did not produce any stories they were prepared for the upcoming results, which could be announced by early 2016, said Nakkazi.

There is enthusiasm from the journalists to be part of the monthly Science Cafés as evidenced from the consistency of the turn up, which also means that they are gaining knowledge and want to continuously improve their understanding and skills of reporting about health care issues.

Most of them record the speakers, get their contacts, take pictures and they usually ask a lot of questions creating lively debates, which indicates a genuine interest. Dr. Wakabi commented that it is what is said ‘off cuff’ that sinks in best.

“We have regular journalists attending and we hope they will learn the science and create a solid Network even beyond this,” said Nakkazi after the Science Café was concluded and journalists rushed to get sound bites.

Reflections from the United States Conference on AIDS

Earlier this month, providers, frontline workers, activists and others met in Washington, DC for the annual United States Conference on AIDS, the largest gathering in the nation of organizations working on HIV/AIDS.

The theme—The Numbers Don’t Lie: It’s Time to End Disparities—was evident throughout the meeting, from a kick-off plenary on #blacklivesmatter to various actions by and for transgender communities. These sessions and actions highlighted the myriad issues many communities face, in addition to HIV/AIDS—and the recognition that without acknowledging intersectionality (a framework of understanding how a variety of oppressions can intersect), the HIV epidemic will never end.

Members of the AVAC team and its US PxROAR program were active at the conference discussing HIV prevention in this context. The conference was appreciated all around as a place to reflect and strategize. Read the ROARers’ blogs below as they take measure of the past year’s successes in trans visibility, PrEP acceleration, treatment trends and the stubborn challenges of criminalization of sex work, drug use and people living with HIV; racism; poverty; lack of health literacy and access disparities, still at the forefront of HIV in the US.

Integrating Advocacy for Prevention Now!

In an ideal world, a woman or girl would be able to walk into a “one-stop-shop” clinic and have all of her health needs met, with respect for her sexual, reproductive and human rights. In order to achieve this goal, funding streams, public policies, and advocacy strategies must also be integrated. (Prevention Now Report)

On September 2 in Washington, DC, CHANGE and AVAC launched the Prevention Now report, which lays out critical actions to better integrate and coordinate advocacy for improved prevention for women and girls. This report is the product of a meeting convened by CHANGE and AVAC in June 2015 in Nairobi that brought together a dynamic group of advocates from across sub-Saharan Africa and the US. Participants included women who lead advocacy efforts on sexual and reproductive health and rights (SRHR), HIV prevention and treatment, gender-based violence (GBV), sex worker health and rights, youth health and rights, maternal health, and abortion access organizations. Participants gathered to develop an advocacy agenda around integrating women’s health services. Perhaps one of the most exciting aspects of this meeting was that so many of us had not met each other before, yet work on similar issues: further evidence on the schism between advocates working in HIV, SRHR and GBV.

It’s a schism that makes no sense in the real world. Preventing unwanted pregnancy and HIV transmission are inextricably linked in the lived experiences of women and girls yet family or fertility planning, STI, HIV, and maternal health funding and service delivery and advocacy are often disconnected.

As the field wrestles with delivering HIV prevention options that women and girls want and can use, it’s critical to remember that women do not think of HIV or prevention as a singular specific issue. Women’s (and everyone’s, for that matter) lives are not compartmentalized in the way that services and product development often are.

There’s a lot of talk, globally, about prevention for women and girls. A myriad of global strategies directly refer to women—the PEPFAR DREAMS Initiaive; the UNAIDS Action Framework Addressing Women, Girls, and Gender Equality; the United Nations Strategy on Maternal and Child Health; Family Planning 2020; and the new Structural Development Goals. But this talk, for now, doesn’t translate into enough action.

There is also HIV prevention research focused on young women. Ongoing and planned studies are exploring microbicides, multi-purpose prevention technologies (MPTs), long-acting injectable ARVs for prevention and HIV vaccines. Many of these studies are focused on or include women. And there are a range of “demonstration projects” designed to learn more about daily oral PrEP in the real world, many of these enrolling women — offering the first strategy that a woman can use for HIV prevention that doesn’t require partner negotiation at the time of sex. Up next are results are expected from trials of the vaginal microbicide dapivirine ring in early 2016. Also beginning this year is the ECHO trial that will study the possible relationship between HIV and long-acting hormonal contraception.

All of this means there are ample opportunities — and needs — for advocates to influence the implementation of SRHR and HIV integration strategies and research initiatives and to advocate for a new paradigm in which donors, policymakers, researchers and providers understand and act on women’s SRHR needs and preferences.

Participants at the Nairobi meeting in June looked at barriers and opportunities and proposed creative strategies to address and take advantage of them. The meeting report launch in DC this September brought those recommendations to US-based policy makers, advocates and implementers in the room—and sparked a discussion about next steps in the US and global context.

Over 30 participants in DC from the HIV and SRHR worlds discussed and compared barriers to more integrated advocacy. Topics included the pressure to respond to donor-driven agendas, some of the discontent in the SRHR world on the increased amount of funding for HIV vs. the drying funding streams for SRHR, the fear of diluting “the message” when integrating agendas and just the sheer amount of work to be done. One participant—a long-time HIV activist herself—noted that it was time for HIV advocates to do the hard work of building the case for SRHR advocacy and funding and play a more prominent role in making the inroads into SRHR work. Echoing the discussion in Nairobi, the DC participants noted the importance of “power-building” young women to lead the charge in integrated advocacy efforts and underscored the need to include frontline clinicians in the dialogue on integration.

Integration is a development buzzword. It sounds like a pretty technical term to many and means different things to different people. Depending on who you ask, it can mean combining budgets, work plans, staff training, counseling and public education messages for diseases, health needs or populations that are, inexplicably, often treated in siloes. So, for example, there are active conversations about integrating TB and HIV services; integrating HIV and broader sexual and reproductive health (SRH) services; ensuring that sexual and reproductive rights are integrated into all services; looking to integrate assessment of gender-based violence into services; ensuring cervical cancer screening, prevention and treatment is included; integrating services for adults and children under one roof… and the list goes on…

The bottom line for advocates is clear: If we want integrated services, we need integrated advocacy. As HIV prevention advocates we must challenge ourselves and others to go beyond lip service when considering what it would take to deliver new HIV interventions to women and girls. When we talk about an integrated package of interventions we need to understand what that means, to be able to describe what the package looks like and potential delivery challenges. (See resources on ongoing Integration initiatives below.)

What’s the one simple thing you can do today towards integrated advocacy? Is there a word or phrase you can add to your HIV prevention message? Is there someone from a cervical cancer screening program you can invite to your next meeting? Read the report, it may inspire you.

Resources on Integration HIV/SRHR Initiatives

Notice of public meeting of the President’s Emergency Plan for AIDS Relief (PEPFAR) Scientific Advisory Board

The PEPFAR Scientific Advisory Board will meet October 14, 2015 from 8:30 am to 5:30 pm at 1800 G St. NW., Suite 10300, Washington DC. The meeting is open to the public and will be led by Ambassador Deborah Birx and Board Chair Dr. Carlos del Rio. Meeting topics include recommendations from Expert Working Groups focused on “Test and START” and pre-exposure prophylaxis (PrEP) initiatives for PEPFAR, and updates on PEPFAR 3.0 programmatic activities.

USCA: We’ve Come a Long Way

Cindra Feuer is an AVAC staff member.

This was my eighth time to the USCA conference. It’s impressive to watch the evolution of people’s knowledge and understanding of biomedical prevention. In fact, “biomedical” has become a household word, tossed around casually at plenaries and in sessions. In the early days, while PrEP was still in clinical trials, no one was really interested in attending our PrEP sessions, usually relegated to 8:30 on a Saturday or Sunday morning. People would say, “talk to us when PrEP is here.” My colleague Kevin took to donning a sandwich board to advertise our sessions. Our PrEP talks have graduated from sideline roundtables to primary real estate — this year, the first workshop session after the first day plenary.

My fondness for this conference grows yearly. Participants are primarily frontline service providers from ASOs, which by now are mostly staffed by people living with HIV or those in proximity. Needless to say, it is a community of about 4,000 black and brown gay men, women of color and transgender people. There are also Department of Health and CDC folks and a smattering of PhRMA. The constellation makes for a serious yet fun and non-judgmental way of sharing experiences. The mission lately is how to best move people through the treatment cascade and deliver PrEP. Most who need PrEP are not aware of it but worse is the lack of knowledge on the part of providers. Culturally competent care is a tiresome gap.

I learned that funding for PrEP could be available to most people in the country, even the undocumented. There are at least five different mechanisms covering some combination of costs for drugs, doctor’s visits and lab tests. However, wending through these systems is terribly complicated, requires a professional health navigator and underscores the need for better healthcare systems in the US. Access is especially difficult in the 19 states the have not signed on to Medicaid expansion because their representatives’ resentment for Obama outweighs their need to serve their constituents.

We’ve come a long way from the activism of “drugs into bodies”. There was a staged protest for trans’ rights. USCA is all about “edutainment”. Folks like Laverne Cox now participate, sharing the spotlight with other motivational speakers. There were hired professionals who interpretive danced through the leaky treatment cascade, “filling the gaps”. This particular lunch show was sponsored by Gilead. I suppose this is why their dance did not address the distance between cost to manufacture Gilead’s life-extending HCV drug — Sovaldi — and the gouged prices they sell it for. Times have indeed changed but, at last, biomedical HIV-prevention is becoming inculcated at the forefront of the US HIV response.

USCA 2015: The Numbers Don’t Lie

Marsha is Executive Director of The Afiya Center for HIV Prevention and Sexual Reproductive Justice and is a member of AVAC’s PxROAR program.

At the onset of this year’s US Conference on AIDS, I had already made a conscious and very well thought out decision that this would be my absolute last USCA. This conference seems to have become too matter of fact and a gathering spot for those who have the financial means to get here, lodge here and eat here. It seems to have become a who’s who among the elite of the HIV community. Needless to say I did not have really huge expectations for USCA 2015 and then something happened—I stumbled upon an amazing lunch plenary session. The opening plenary had some surprising speakers who left me with much excitement and assuredness of things to come. The youth speaker representing the NMAC youth scholars did a wonderful job exemplifying that there is much hope with this next generation HIV Advocates that will be relentless in achieving the quest to get to Zero.

“The Numbers Don’t Lie,” the theme of this year’s conference, was amplified when plenary speaker Valarie Rochester, Imperative Director of Programs and long-time public health advocate, spoke and it was her speech that changed my conference experience. These words spoken by Valerie illuminated what the numbers don’t tell. “While we can never disregard the numbers,” she said, “they do not tell the whole story.” Valerie Spencer did an amazing job lifting up the lives of transgender women, but did we hear her? Transgender women relegated to receive services at gay, bi-sexual and men-who-have sex-with-men service providers is an insult, and with that it makes the numbers lie.

Transgendered women should receive services from women centered organizations and those organizations should be adequately funded to meet those needs. USCA must do a better job amplifying women, all women, rather than it appearing as they are there as an afterthought. Thank you USCA for the gift of Black Lives Matter activist DeRay McKesson bringing the numbers into perspective with his statement “See all of me or you’re lying.”

USCA 2015 was a different experience for me. It was a reminder of how far we have come, how much more we have to do, how much more we can do and how much farther we have to go.

Reflections from USCA: What is the role of Public Health in a Police State?

Lindsay Roth, MSW, is on staff at the National Viral Hepatitis Roundtable and is a member of AVAC’s PxROAR Program. She works locally with Project SAFE, a harm reduction collective that provides direct services to women surviving street economies and tweets from @safephila.

I recently attended the 19th annual United States Conference on AIDS (USCA). This is my 3rd time attending, and as I am writing this I feel I am still processing emotions of excitement, solidarity and resilience. Especially with the inclusion of Hepatitis C (HCV)- specific programming, it is clear: the biomedical revolution many activists, scientists and other stakeholders have worked so hard for is upon us. Unlike the past years where PrEP was met with ambivalence, it is being unequivocally embraced as a key prevention method. For those co-infected with Hepatitis C, there are humane curative treatments with remarkable outcomes. For both HIV and HCV, Treatment as Prevention shows promise to eradicate these viruses from vulnerable populations. There is great optimism that we can test and treat our way out of both epidemics. But, in the context of a mass incarceration in the USA that is becoming harder and harder to ignore – can we?

“Biomedical stuff will get us 50 percent of the way there,” Barb Cardell of Positive Women’s Network said to me after my presentation on the visibility of Sex Workers in the HIV/AIDS National Strategy. The strategy offered a powerful framework for USCA, as it was recently updated from its first iteration in 2010. There are many things to be excited about in the President’s ambitious goals for an AIDS free generation. A federal commitment to ending HIV is still too new to take for granted. However, as was recently pointed out by Megan McLemore of Human Rights Watch, this agenda fails to recognize the impact of the criminal justice system on health outcomes. Indeed, biomedical interventions, even cures, mean little in the context of the hypercriminlization in the United States. The impact of mass incarceration is clear in 5 key populations in which the HIV (and HCV viruses) continue to impact disproportionately.

To clarify, mass incarceration is not only the number of people behind bars in this country — and of that we have many. It also includes the various means of justice involvement, including arrest, probation, parole and “alternatives to incarceration” (which are oftentimes not as liberatory as they sound). It is very important to recognize the expansion of our criminal justice system has done little to impact rates of crime and most people behind bars are not violent offenders.

Black Americans

#BlackLivesMatter activism was visible throughout the conference, and featured prominently in the opening plenary, which included presentations We Are the Protesters activist DeRay Mckesson; a long-time public health advocate Valerie Rochester of Black Women’s Health Imperative; and Valerie Spencer, a long-time advocate for Black transgender women. Following the event’s theme of “The Numbers Don’t Lie:” it is undeniable that HIV is disproportionately impacting black Americans and role of the criminal justice system in this disparity is irrefutable. Systems of mass incarceration have generational impact of black Americans, who then suffer poorer housing, education and, naturally, health outcomes. The disruptive factor of the criminal justice system — and an unfair and unequal one at that — needs to be addressed if we ever want to End AIDS.

Sex Workers

Sex workers were excluded yet again from the US strategy. Globally sex workers are considered a key population, yet in the United States the criminalization of prostitution continues to marginalize sex workers within HIV/AIDS prevention efforts. Anna Forbes explained that other countries, like South Africa and Ghana have recognized the role of sex workers in the HIV epidemic, and included them in national strategies through empowerment-based programming. Women from Casa Ruby presented on survival sex work, as the transgender individuals are systemically excluded from legal economies and resort to underground economies like sex work to survive. A participant noted, “The government puts a lot of money incarcerating transwomen [who do sex work], but zero into reentry.”

Jacquie Rorbage of Power Inside explained how women and girls are often forced into trading sex to survive in over criminalized neighborhoods, as well as in prisons and jails. While sex worker laws are recognized as exacerbating the HIV epidemic, the US has fortified prohibitionist policies towards sex work in past years. Rorbage and other presenters including migrant sex worker activist Elene Lam of Butterfly, argued that these laws do little to mitigate the trafficking or coercion of people in the sex trade, but further empower law enforcement to profile and target women of color.

Transgender Individuals

Prostitution laws are but one of the ways that transgender individuals are sucked into the ever-expanding web of the criminal justice system, and this disproportionately impacts transwomen of color. Studies show that young people overwhelmingly enter the sex trade out of necessity because they have been forced from transphobic homes. LGBTQ youth face extreme violence in the child welfare and shelter systems, where they have no protections.

I would be remiss not to mention in addition to this systemic violence faced by transgender individuals, at least 20 transgender women of color have been murdered this year alone.

Bamby Salcedo and #TransLivesMatter activists staged a protest demanding visibility of transgender and gender nonconforming people in HIV programming. Transwomen are often included as “MSM,” or men who have sex with men, which is a crucial misstep to understanding and addressing the needs and experiences of transwomen as distinct from gay men (I can’t believe I am even writing this sentence!).

This country has systemically banished transgender individuals to the streets and then punished them for doing so, and unsurprisingly this population experiences extreme health disparities. Ruby Corodo emphasized that this population needs more than an “HIV test and a gift card”. We need real systemic change that addresses homelessness and employment and reforms the criminal justice system.

People Who Inject Drugs

Much like sex work, the prohibitionist approach to regulating substance use in this country has severely compromised the way we can empirically understand substance use and substance users. This echoed through the conference wherein the treatment of people who use drugs is guided by stigma as opposed to evidence-based interventions. The Harm Reduction Coalition facilitated a harm reduction track to address these enduring issues. Currently, curative treatments for HCV — which impacts as high as 90 percent of substance users — are being withheld due to sobriety requirements. These requirements have no evidence base; in fact research shows us quite the opposite — that treating active drug users will reduce the burden of disease in networks where it is needed most. Drug users have been as successful as non-drug users in HCV treatments.

Syringe exchange programming continues to be celebrated despite a federal ban on funding this evidence based prevention tool. Despite the success of syringe access programs; participants, especially African America participants, still face tremendous targeting by law enforcement. The criminalization of drug users, and successful interventions in their lives, continue to thwart our push to end AIDS. The implementation of proven harm reduction programming remains crucial, but must exist alongside proactive efforts to change the draconian drug laws in this country. We will never end AIDS without ending the war on drugs.

People Living With HIV

The very survivors of this epidemic remain criminalized in direct and extreme ways. We all should know the about Michael Johnson, who now faces decades behind bars. Nearly two-thirds of states in the United States have laws that criminalize potential HIV exposure. Most of theses laws were developed before ART and have not evolved with scientific advances. Many criminalize low risk behaviors.

It would be wrong to address individual risk behavior in a vacuum. All people want to be healthy, yet folks from these historically marginalized communities are pushed out their homes, out of work, and out of care — and often right into prison or jail. It’s systemic.

Effective, tolerable and accessible biomedical interventions means the end of HIV and HCV is in sight, but we, as patients, providers, policy makers and other stake holders must look across movements and work to dismantle the systems that make our efforts to end AIDS impossible.

USCA: What Kind of Advocate Are You?

Minister Rob Newells is a member of the staff at Imani Community Church and serves as Board Chair for AIDS Project of the East Bay in Oakland, California. He is also a member of AVAC’s PxROAR program.

During the Black PrEP Summit pre-conference and throughout #USCA2015, advocates and researchers discussed and debated how to get more African Americans on PrEP. When exactly did we shift from advocating for our communities to advocating for the pharmaceutical industry? As advocates, what is our goal? Are we biomedical prevention and treatment advocates with the goal of getting as many people as possible on effective prevention and treatment drugs? Are we community advocates with the goal of being the voice for those people who are living with or at-risk for HIV infection to make sure communities get what they want and need? Can we be both at the same time?

At the International AIDS Society Conference on HIV Pathogenesis, Treatment and Prevention in Vancouver a couple of months ago, researchers presented findings of the ATN 110 study of gay and bisexual men ages 18 to 22. At the outset of the study—up until about week 12—black participants had adherence that was close to, though just under, the threshold of four doses per week believed to be needed for protection in men who have sex with men. But adherence dropped off dramatically after week 12, which was also the time where clinic visits went from monthly to quarterly. By week 48 median drug levels were barely above zero indicating very little use of PrEP. Why?

Advocates and researchers are asking otherwise healthy young black men with an understandable mistrust of science and medicine shaped by historical and contemporary issues of prejudice and miscommunication to commit to seeing a doctor and getting blood drawn four times a year and taking a pill every day. When they don’t, we call them ignorant or uneducated. We target them and shame them for not jumping on the PrEP bandwagon. What kind of advocate does that?

It has been said that with effective treatment and PrEP we have all the tools we need to end the HIV epidemic in the United States, but during NMAC’s Master Series on Race at USCA Dr. Victoria Cargill expressed an opinion that “we will never treat our way out of HIV.”

Yes. Treatment works, but treatment can’t work by itself. Everyone knows that structural inequities must be addressed in order to end the HIV epidemic. Everyone knows that stigma must be addressed in order to end the HIV epidemic. Everyone knows that HIV criminalization must be addressed in order to end the HIV epidemic. Everyone knows that what Dr. Cargill said is true. So, what kind of advocate are you?

I am a PrEP educator in my community. I am an advocate for increasing access to PrEP in my community. I am not a PrEP advocate. I am a community advocate through and through. Before I was an advocate (or a Board Chair), I was a same gender loving black man from Deep East Oakland living with HIV. I made a commitment to my community to give them the truth and represent them honestly with no strings attached. In the words of the Dr. Seuss’ Horton, “I meant what I said, and I said what I meant. An [advocate’s] faithful one-hundred percent.”