AIDS 2016: Justice Edwin Cameron addresses delegates at Durban AIDS conference

I owe my life to you, says judge

19 July 2016

“The fact that I am here today at all is a tribute to the activists, researchers, doctors and scientists in the audience,” Judge Edwin Cameron told delegates to the Durban Aids conference, delivering the Jonathan Mann memorial address. He asked sex workers and transgender people to join him on stage. His godson Andy Morobi also addressed the conference.

It is a great privilege and an honour to be here. At the start of a very busy conference, with many stresses and demands and anguishes, I want to start by asking us to pause quietly for just a few moments.

It has been 35 years since the Western world was alerted to Aids. The first cases of a baffling, new, terrifying, unknown syndrome were first reported in the northern summer of 1981. The reports were carried in the morbidity and mortality weekly reports of the CDC on 5 June 1981.¹

These last 35 years, since then, have been long. For many of us, it has been an arduous and often dismaying journey.

Since this first report, 35 million people have died of Aids illnesses² – in 2015 alone, 1.1 million people.^³

We have felt the burden of this terrible disease in our bodies, on our minds, on our friends and colleagues, on our loved ones and our communities.

Aids exposes us in all our terrible human vulnerability. It brings to the fore our fears and prejudices. It takes its toll on our bodily organs and our muscles and our flesh. It has exacted its terrible toll on our young people and parents and brothers and sisters and neighbours.

So let us pause, first, in remembrance of those who have died –

those for whom treatment didn’t come in time
those for whom treatment wasn’t available, or accessible
those denied treatment by our own failings as planners and thinkers and doers and leaders
those whom the internal nightmare of shame and stigma put beyond reach of intervention and help.
These years have demanded of us a long and anguished and grief-stricken journey.
But it has also been a journey of light – a journey of technological, scientific, organisational and activist triumph.

So we must pause, second, to celebrate the triumphs of medicine, science, activism, health care professional dedication and infrastructure that have brought ARVs to so many millions.

Indeed, the fact that I am here today at all is a tribute to the activists, researchers, doctors and scientists in the audience.

Many of you were responsible for the breakthroughs that led to the combination anti-retroviral treatment that I was privileged to start in 1997 – and which has kept me alive for the last 19 years.

I claim no credit and seek no praise for surviving. It felt like an unavoidable task.

All of us here today who are taking ARVs – let us raise our hearts and humble our heads in acknowledgement of our privilege – and often plain luck – in getting treatment on time. That treatment has given us life.

So let us pause, third, to honour the doctors – the scientists – the researchers – the wise physicians and strong counsellors who have saved lives and healed populations in this epidemic.

As important, fourth, let us pause to honour the activists, whose work made treatment available to those who would not otherwise have received it.

We pause to honour the part, in treatment availability and accessibility, of angry, principled and determined activists, in South Africa’s Treatment Action Campaign and elsewhere. For millions of poor people, their anger brought the gift of life.

Without their courage, strategic skill and passion, medication would have remained unimaginably expensive, out of reach to most people with HIV. They led a successful campaign that saved millions of lives.

The fact that many millions of people across the world are, like me, receiving ARV treatment, is a credit to their work.

They taught us an important lesson. Solidarity and support are not enough. Knowledge and insight are not enough. To save lives, we need more. We need action – enraged, committed, principled, strategically ingenious action.

They refused to acquiesce in a howling moral outrage. This was the notion that life-saving treatment – treatment that was available, and that could be cheaply manufactured – would not given to poor people, most of them black, because of laws protecting intellectual property and patent-holders’ profits.

The Treatment Action Campaign and their world-wide allies frontally tackled this. They changed the way we think about healthcare and essential medicines access.

What is more, without the Treatment Action Campaign, President Mbeki’s nightmare flirtation with Aids denialism between 1999 and 2004 would never have been defeated.

Instead, the TAC took to the streets in protest. They demanded treatment for all. And when President Mbeki proved obdurate, they took to the courts.

Because of my country’s beautiful Constitution, they won an important victory. Government was ordered to start making ARV treatment publicly available.

Today my country has the world’s largest publicly provided anti-retroviral treatment program.⁴ More than 3.1 million people, like me, are receiving ARVs from the public sector.⁵

I am particularly proud that when someone with HIV registers for treatment in South Africa, they should not be asked to show an identity document or a passport or citizenship papers. That is as it should be. The imperatives and ethics of public health know no artificial boundaries.

In the sad history of this epidemic, the triumphs of Aids activists, on five continents, are a light-point of joy.

So there is much to celebrate. I celebrate the joy of life every day with the medication – which keeps a deadly virus effectively suppressed in my arteries and veins, enabling me to live a life of vigour and action and joy.

But we must not forget that Aids continues to inflict a staggering cost on this continent and on our world.

What is more important than my survival, and that of many millions of people in Africa and elsewhere on successful ARV treatment, is those who are not yet receiving it.

There still remains so much that should be done. More importantly, there still remains so much that can be done.

Too many people are still denied access to ARVs. In South Africa, despite our many successes, well over six million people are living with HIV. And, though about half of South Africans with HIV are still not on ARVs,⁶ from September this year ARVs will be provided to all with HIV, regardless of CD4 count.

Globally, of the 36.7 million people living with HIV at the end of 2015, fewer than half had access to ARVs.⁷

Worse, the pattern of ARV availability is one that reflects our own weaknesses and vices as humans – our prejudices and hatreds and fears, our selfish claiming for ourselves what we do not grant to others.

Most of those still in need of ARVs are poor, marginalised and stigmatised – stigmatised by poverty, sexual orientation, gender identity, by the work they do, by their drug-taking and by being in prison.

Dr Jonathan Mann, to whom this lecture is dedicated, did pioneer work in recognising the links between health and human rights. He stressed that to address Aids, “we must confront those particular forms of inequity and injustice – unfairness, discrimination – not in the abstract, but in its specific and concrete manifestations which fuel the spread of Aids.”⁸

He recognised that the perils of HIV are enormously increased by laws that specifically criminalise transmission of HIV and exposure of another to it. This was also confirmed by the wonderful and authoritative work the Global Commission on HIV and the Law has recently done.

These laws are vicious, ill-considered, often over-broad and intolerably vague. By criminalising undefined “exposure”,⁹ they ignore the science of Aids, which shows how difficult HIV is to transmit.¹⁰ Apart from driving those at risk of HIV away from testing and treatment, they enormously increase the stigma that surrounds HIV and Aids.

Across this beautiful continent of Africa, men who have sex with men (MSMs) remain chronically under-served. They lack programs in awareness, education, outreach, condom provision and access to ARVs. As a recent study by Professor Chris Beyrer and others has shown, we have the means to end HIV infections and Aids deaths amongst men having sex with men. Yet “the world is still failing”.¹¹

For this, there is one reason only – ignorance, prejudice, hatred and fear. Theworld has not yet accepted diversity in gender identity and sexual orientation asa natural and joyful fact of being human.

Seventy eight countries in the world continue to criminalise same-sex sexual conduct. Thirty four of them are on this wide and wonderful continent of Africa.

It is a shameful state of affairs. As a proudly gay man I have experienced the sting of ostracism, of ignorance and hatred. But I have also experienced the power of redeeming love and acceptance and inclusiveness.

We do not ask for tolerance, or even acceptance. We claim what is rightfully ours. That is our right to be ourselves, in dignity and equality with other humans.

Discrimination on the ground of sexual orientation or gender identity is a colossal and grievous waste of time and social energy.

As our beautiful Archbishop Desmond Tutu has said, when we face so many devastating problems – poverty, drought, disease, corruption, malgovernance, war and conflict – it is absurd that we waste so much time and energy on sexual orientation (“what I do in bed with whom”.)¹²

The sooner we accept the natural fact that gender and orientation diversity exists naturally between us, the quicker we can join together our powers of humanity to create better societies together.

The same applies to sex workers. Sex workers are perhaps the most reviled group in human history – indispensable to a portion of mostly heterosexual males in any society, but despised, marginalised, persecuted, beaten up and imprisoned.

Sex workers work.¹³ Their work is work with dignity.

Why do people do sex work? Well, ask a sex worker –

To buy groceries, and pay their rent, to study, to send their children to school, and to send money to their parents and extended family.
It is hard work. Perilous work. Sex workers have a tough, dangerous job. They deserve our love and respect and support – not our contempt and condemnation.

They deserve police protection, not exploitation and assault and humiliation.

More importantly, they deserve access to every bit of HIV knowledge and power that can protect them from infection and can help them to protect others from infection.^¹⁴

Pre-exposure prophylaxis (PrEP) works for sex workers.¹⁵ It should be made available to them, as a matter of urgent priority, as part of all national Aids treatment programs.

In September 2015, the World Health Organization, recognizing PrEP’s efficacy, recommended that PreP be provided to all “people at a substantial risk of HIV,” including sex workers.^¹⁶

When we in South Africa launched our three-year National Sex Worker HIV Plan in March 2016, we proposed providing PrEP to sex workers. WHO recognized South Africa as the “first country in Africa to translate this recommendation into national policy.”¹⁷

Beginning last month (June 2016), the first programs began providing daily PrEP to sex workers in South Africa.¹⁸

Criminalising sex workers is a profound evil and a distraction from the important work of building a humane society.¹⁹

Especially vulnerable too are injecting drug users. Upon them are visited the vicious consequences of perhaps the most colossal public policy mistake of the last 80 years – the war on drugs.

The vulnerability of injecting drug users is evident in the high percentage of injecting drug users with HIV. Throughout the world, of about 13 million injecting drug users, 1.7 million (13%) are living with HIV.^²⁰

They are denied elementary life-saving services. This is not on the supposedly “dark” continent of Africa – but in the United States of America. If you want an example of evidence-ignoring public policy, that causes loss of life and injury, and spread of HIV, do not look complacently to President Mbeki’s South Africa twelve years ago – look to the United States of America, now, and the federal government’s refusal to make needle substitution available to IDUs . While the US government’s decision to partially lift this ban on federal funding for needle exchange programs earlier this year is a welcome development, this decision was only spurred by an outbreak of new HIV cases among drug users in the United States,^²¹ and the delay has undoubtedly resulted in preventable HIV infections.^²²

Injecting drug users living with HIV are further denied access to treatment. And the United States and Canada, healthcare providers are less likely to prescribe ARVs for injecting drug users, because they assume that IDUs are less likely to adhere to treatment and/or will not respond to it. This is in spite of research showing similar responses and survival rates for those who do have access to ARVs.^²³

We know exactly what we have to do to tame this epidemic.

We have to empower young people and especially young girls, to make health seeking choices when thinking about sex and when engaging in it.^²⁴

We have to redouble our prevention and education efforts.

Prevention remains a key necessity in all our strategies about Aids.

Second, we have to test, test, test, test, test, test and test. We cannot promote consensual testing enough. Testing is the gateway to knowledge, power, understanding and action.

Without testing there can be no access to treatment. The more we test, the more we know and the more we can do.

Testing must always be with the consent of the person tested. But we have to be careful that we do not impose unnecessarily burdensome requirements for HIV testing.

HIV is now a fully medically manageable disease. Consent to testing should be capable of being implied and inferred. We must remove barriers to self-testing.

I speak of this with passion – because, by making it more difficult for health care workers to test, we increase the stigma and the fear surrounding HIV.

We must make it easier to test, not harder. Gone are the terrible days when testing was a gateway only to discrimination, loss of benefits and ostracism.

In all this, we must be attentive to the big understated, underexplored, under-researched issue in the epidemic. That is the effect of the internalisation of stigma within the minds of those who have HIV and who are at risk of it.

Internalised stigma has its source in outside ignorance, hatred, prejudice and fear.

But these very qualities are imported into the mind of many of us with HIV and at risk of it.

Located deeply within the self, self-blame, self-stigma and self-paralysing fear are all too often deadly.^²⁵

We must recognise internalised stigma. I experienced its frightening, deadening effects in my own life. Millions still experience it. We must talk about it. And we must find practical ways to reduce its colossally harmful effects.

And, most of all, we must fix our societies. As my friend and comrade, Mark Heywood, has recently written, we have medically tamed Aids. But we have not tamed the social and political determinants of HIV, particularly the overlapping inequalities on which it thrives – gender, education, access to health care, access to justice. That is why prevention strategies are not succeeding.

A better response to HIV, Mark rightly says, needs a better world. Governments must deliver on their human rights obligations. Activists and scientists must join struggles for meaningful democracy, gender equality and social justice. Activists must insist on equal quality education, health and social services; investment in girls and plans backed by money to stem chronic hunger and malnutrition.²⁶

But, to end, I want to return to the light points in our struggle against the effects of this disease over the last 30 years.

I want to end with a thrilling fact – this is that, unexpectedly, joyously, beyond our wildest dreams, perinatal and paediatric ARVs have proved spectacularly and brilliantly successful.

First, let us rejoice that perinatal transmission of HIV can be completely eliminated. It was about this that the Treatment Action Campaign fought President Mbeki’s government all the way to the Constitutional Court, the Court in which I am now privileged to sit.

Now we know how effectively we can protect babies at birth and before birth from infection with HIV.

In South Africa, the rate of mother-to-child transmission of HIV is now reduced to 4%.²⁷ Worldwide, in 2015, 77% of all pregnant women received treatment to prevent perinatal transmission of HIV.²⁸

Last year, Cuba became the first country to eliminate mother to child transmission of HIV entirely.^²⁹ In 2016, Thailand, Belarus, and Armenia have also reached this milestone.^³⁰

More even, fifteen years ago we didn’t know how well babies and toddlers would tolerate ARVs.

We didn’t know just a decade ago how young children born with HIV would thrive on ARVs.

And would they take their ARVS? Would they grow to normalcy?

Instead of this uncertainty, we now know, triumphantly, that ARVs work wonderfully for children born with HIV.

I want to rejoice in the beauty and vigour of my godson Andy Morobi. Andy and I became family twelve years ago, at the end of 2004.

He is young, energetic, ambitious and enormously talented. He was born with HIV. He has been on ARVs for the last eight years. Like me, he owes his life to the medical and social miracle of anti-retroviral treatment.

I want to end on another light point. I want to honour the treatment activists from Africa, Europe, North America, South America, Australasia and Asia, who fought for justice in this epidemic.

I want to honour them, like Dr Jonathan Mann, to whom this lecture is dedicated. Like my mentor, Justice Michael Kirby of Australia, for their energy and courage and determination and sheer resourceful and resilience in fighting for justice in this epidemic.³¹

And I want to end by celebrating the fact that we have sex workers here this morning. They are wearing the T-shirts in the slide a few minutes ago. The T-shirts say: “THIS IS WHAT A SEX WORKER LOOKS LIKE”.

And, most of all, as a gay white man who has lived a life privileged by my race and my profession and my maleness, I ask that we celebrate the astonishing courage of transgender activists, of lesbians and gay men across the continent of Africa and in the Caribbean.

They are claiming their true selves. They do so often at the daily risk of violence, attack, arrest and imprisonment.

They have the right to be their beautiful selves. They are claiming a right to be full citizens of Africa, the Islands and the world. They have done so at extraordinary risk.

They know that they cannot live otherwise.

It is to these brave people that this conference should be dedicated: to the sex workers, injecting drug users, migrants, lesbian, gays and transgendered people, the children, the activists, those in prison, the poor and the vulnerable.

It lies within our means to do everything that will ensure whole lives and whole bodies for everyone with HIV and at risk of it.

All it requires is a passion and a commitment and a courage starting within ourselves. Starting within each of ourselves. Starting now.

Thank you very much.

For footnotes please see original articles in GroundUp

Beyond Blame @ AIDS 2016 Communique

DURBAN, SOUTH AFRICA, 17 JULY 2016

We cannot end the HIV pandemic without ending the epidemic of criminalisation of people living with HIV.

As activists, advocates, lawyers, and researchers engaged in the fight against HIV criminalisation, we are acutely aware of the harms it causes – to people who are criminalised, to those living with the threat of criminalisation, and to the HIV response in our countries. We stand in solidarity with survivors of unjust criminalisation, whose powerful stories we have heard and whose courage we honour.

The science of HIV is settled. HIV treatment works: it prevents disease, prevents death, and prevents transmission. Yet the scientific advances of recent years, which have saved countless lives, have all too often been misunderstood, misrepresented or ignored in the criminal justice system. The number of countries – 72 – with laws targeting people with HIV is increasing, not falling, and unjust prosecutions continue unabated. To protect both public health and human rights, these unjust laws must be repealed, police and prosecutorial policies must be reformed, and legal practitioners must be educated about the reality of HIV today.

There has been insufficient attention paid to the issue of HIV criminalisation within the scientific and medical community. While many researchers and clinicians are powerful and valued allies in our fight against unjust laws, we believe the medical and scientific communities can do more – indeed they must do more if the promise of ending HIV is to be achieved.

There has also been insufficient attention paid to these issues by the International AIDS Conference. As the leading global event in the HIV/AIDS arena, the IAC should provide greater prominence to the ways in which law and health intersect, especially in the area of HIV criminalisation. We call on the IAS to make a clear commitment to greater visibility of and access to HIV criminalisation-related research and policy.

We call on the scientific and medical community to join us as advocates in the fight to end HIV criminalisation. We are united by a common desire to see an end to new HIV infections, to AIDS deaths, to HIV-related discrimination, and to stigma against communities living with and affected by HIV. There can be no ‘end to AIDS’ while people with HIV face police action, prosecution, and imprisonment. We cannot reach the 90-90-90 target while criminal laws actively discourage testing, treatment, and prevention.

Public health policy, treatment, and support programmes are all impeded if they are not coupled with creating an enabling environment free of HIV criminalisation. The time is right for a new, holistic approach that incorporates all these issues under a single umbrella of action to end HIV.

ABOUT HIV JUSTICE WORLDWIDE

HIV JUSTICE WORLDWIDE is an initiative made up of global, regional, and national civil society organisations – most of them led by people living with HIV – who are working together to build a worldwide movement to end HIV criminalisation. All of the founding partners have worked individually and collectively on HIV criminalisation for a number of years.

The founding partners are: AIDS and Rights Alliance for Southern Africa (ARASA); Canadian HIV/AIDS Legal Network; Global Network of People Living with HIV (GNP+); HIV Justice Network; International Community of Women Living with HIV (ICW); Positive Women’s Network – USA (PWN-USA); and Sero Project (SERO).

ABOUT BEYOND BLAME @ AIDS 2016

On 17 July 2016, 150 advocates, activists, researchers, and community leaders met in Durban for a full-day pre-conference meeting for AIDS 2016, to discuss progress on the global effort to combat the unjust use of the criminal law against people with HIV. The Durban meeting followed similar successful meetings held at the International AIDS Conferences in Melbourne (2014) and Vienna (2010). The purpose of the meeting was to provide practical opportunities for advocates working in different jurisdictions to share knowledge, collaborate, and energise the fight against HIV criminalisation. Detailed summaries and outcomes of the meeting, including a video summary, will be available in due course from www.hivjusticeworldwide.org

Justice Edwin Cameron: Keynote Speech to Beyond Blame @ AIDS 2016

Justice Edwin Cameron’s closing keynote speech to Beyond Blame: Challenging HIV Criminalisation, a pre-conference to AIDS 2016, held on Sunday 17th July 2016 in Durban, South Africa, convened by HIV JUSTICE WORLDWIDE.

BEYOND BLAME
Challenging HIV Criminalisation @ AIDS 2016, Durban

(29 min, HJN, South Africa, 2016)

On 17 July 2016, approximately 150 advocates, activists, researchers, and community leaders met in Durban, South Africa, for Beyond Blame: Challenging HIV Criminalisation – a full-day pre-conference meeting preceding the 21st International AIDS Conference (AIDS 2016) to discuss progress on the global effort to combat the unjust use of the criminal law against people living with HIV.

Attendees at the convening hailed from at least 36 countries on six continents (Africa, Asia, Europe, North America, Oceania, and South America).

Beyond Blame was convened by HIV Justice Worldwide, an initiative made up of global, regional, and national civil society organisations – most of them led by people living with HIV – who are working together to build a worldwide movement to end HIV criminalisation.

The meeting was opened by the Honourable Dr Patrick Herminie, Speaker of Parliament of the Seychelles, and closed by Justice Edwin Cameron, both of whom gave powerful, inspiring speeches. In between the two addresses, moderated panels and more intimate, focused breakout sessions catalysed passionate and illuminating conversations amongst dedicated, knowledgeable advocates

HIV criminalisation firmly on the agenda at AIDS 2016

For those of you in Durban for AIDS 2016 this week and next, make sure you don’t miss all the amazing HIV criminalisation events taking place.

Download and print this 2-pager covering all the HIV criminalisation highlights (including posters and Global Village events) put together by the HIV Justice Network on behalf of HIV JUSTICE WORLDWIDE.

And of course, we hope to see you at our pre-conference this Sunday July 17th, Beyond Blame: Challenging HIV Criminalisation. Download the Beyond Blame Final Programme .

Only a few places remain, so register now if you want to attend.

HIV criminalisation highlights at AIDS 2016 by HIV Justice Network

Uganda: Civil society coalition file a constitutional petition against controversial HIV and AIDS Prevention and Control Act, 2015

KAMPALA – A network of civil society organisations has dragged the Attorney General to the Constitutional Court, querying the packaging of the HIV and AIDS Prevention and Control Act, 2015.

Representatives of the CSOs filed a constitutional petition on Thursday, lamenting that the law is undermining efforts to fight the scourge.

“I believe the law will have the overall effect of undermining public health objectives of HIV prevention and control,” the petition reads in part. –

The petitioners are Uganda Network on Law, Ethics and HIV/AIDS (UGANET), Makerere law don Prof Ben Twinomugisha, and the International Community of Women Living with HIV in Eastern Africa (ICWEA).

Government’s chief legal representative and advisor the Attorney General is listed as the respondent.

Parliament passed the bill on May 13, 2014. President Yoweri Museveni assented to the bill in August of the same year. –

USA: People living with HIV shared their determination to lead the fight for HIV decriminalization at the second HIV is Not a Crime conference

“Thirty-three years ago, a group of activists, tired of how they were being treated, drafted the Denver Principles,” Barb Cardell said to the sleepy but energized audience at an early morning session of the second HIV is Not a Crime conference. Cardell, a long-time HIV activist, is co-chair of the Colorado chapter of Positive Women’s Network, an advocacy network of women living with HIV.

In essence, recalled Cardell, activists were declaring, “Nothing is determined about us without us. … In 1983, we refused to let other people set the agenda. These are the shoes we walk in today.”

The Denver Principles opened with these words: “We condemn attempts to label us as ‘victims,’ a term which implies defeat, and we are only occasionally ‘patients,’ a term which implies passivity, helplessness and dependence upon the care of others. We are ‘People with AIDS.'”

This spring, nearly 300 activists from 34 different states and four countries (Canada, Germany, Mexico and the United States) gathered on the campus of Huntsville, Alabama, to continue that work. Many have been involved in advocacy for years, if not decades, and are determined that the fight for HIV decriminalization be led by those who are living with HIV. They are committed to fostering the meaningful involvement of people living with HIV and AIDS (commonly known as MIPA) in the discussions about policies that affect them.

Khafre K. Abif was diagnosed with HIV 27 years ago. Now, Abif is a community organizer with the Southern AIDS Coalition. “This is my first time working — and by working, I mean getting a salary — in HIV,” he said. Though this is his first paid job in the field, Abif has been advocating around HIV for nearly three decades, always as a volunteer determined to make sure that the voices of those with HIV were not left out of the discussions. “I always brought my table to the table,” he said. “I wasn’t waiting to be invited to the table.”

He doesn’t feel that his outspokenness is exceptional. “There’s a willingness [for people to speak up],” he pointed out. “But people need the support to do it. Once they know that someone will be standing beside and behind them when they speak out, they’ll do it.”

Such support has even reached behind bars to empower those traditionally silenced by prison walls. Kerry Thomas is on the board of the Sero Project. When he speaks at conferences across the country about the effects of HIV criminalization, he does so from the Idaho State Correctional Center, where he is serving a 30-year sentence under a state law criminalizing non-disclosure. Inside prison, he’s been active in combatting fear and ignorance about HIV and has been working to develop a network of imprisoned people living with HIV and other illnesses. He also reaches outside to educate people about the very real effects of criminalization laws. At 7:15 on Tuesday night, he called into the opening plenary to share his thoughts and experiences.

“A few months ago, I was sent a photo of the first HIV is Not a Crime conference,” he told the audience, his voice crackling through the cell phone set beside a microphone. He carries that photo with him at all times to remind himself that he is part of a larger movement. It’s a reminder that gets him through some of the isolation of being in prison. “There are times I may feel lonely, and that’s when the support from you guys means a lot.” At the same time, he acknowledges that the support and opportunities he has are exceptional. “I’m one of the lucky ones that has this community and has the opportunity to speak at these conferences,” he said. “But across the country, there are people who don’t.”

Naina Khanna, the executive director of the Positive Women’s Network USA, points to Thomas as an example of meaningful involvement by those most impacted by criminalization. “If you can figure out a way to have an incarcerated person regularly participate in these board meetings, then we should be able to eliminate barriers to meaningful participation,” she stated. But, she said, doing so involves creating spaces that are trauma-informed and healing as well as understanding — and that address the multiple barriers to participation. For some, physically attending a conference presents numerous challenges, including paying for travel and being targeted at airports for invasive and demeaning search procedures.

For some, having HIV is one of many identities to navigate. Ashton P. Woods refuses to compartmentalize his multiple identities as a black person, a person living with HIV, a gay man and a formerly homeless youth. “To people who say, ‘Pick an issue,’ I say, ‘That’s bullshit,'” he declared. Standing at the podium during a morning plenary, he reminded the audience of the need for solidarity and support for those even more in the crosshairs of intersecting oppressions. “We have to step up as people living with HIV because our trans sisters are at risk.”

Tommy Luckett is a black trans woman. She is also living with HIV in Arkansas, where it is a felony for people who know that they have HIV to engage in any form of sexual intercourse without disclosing their status. Spitting, biting and receiving medical and dental care are also criminalized for people who do not disclose their status.

The fear of prosecution looms over Tommy’s daily life, compounded by the fact that she is both black and trans. “All of these [identities] paint me as a target in my own home state,” she told TheBody.com. The threat of violence is ever present whenever she leaves her house. Across the country, trans women aredisproportionately targeted in hate-motivated attacks and murders. In 2015, it was reported that at least22 trans and gender non-conforming people were murdered in the U.S. This number reflects only the murders that were reported and investigated and whose victims were recognized as trans or gender non-conforming.

But despite the constant risks, Luckett is also an outspoken advocate for HIV and trans issues. She knows the importance of bringing the experiences of trans women of color living with HIV to the table so that their issues are not left out of the conversation. She often finds herself to be the only trans person around, which means having to be both cautious about her behavior and wary of her surroundings. That vigilance can be exhausting and discouraging. (There were at least eight people who identified as trans among the 300 attendees at the HIV is Not a Crime conference.)

“You want to know how to help trans women? Put them in your organization.” Luckett points to Positive Women’s Network USA and the Well Project as models. “They brought me to the table and listen to what I have to say,” she said. She also noted that, as one person, she cannot be everywhere at once — nor should she be expected to be. “When I can’t get to places, that’s where I need my allies to be and to carry my message,” she said.

Andy Spieldenner is an assistant professor at Hofstra University (where he was recently awarded the 2016 Distinguished Teacher of the Year award) and an officer of the U.S. People Living With AIDS Caucus. “Part of MIPA is making sure you’re not the only person in the room,” he noted. To expand meaningful participation — and to avoid burnout — he encouraged attendees to bring their peers along and help develop their leadership. “Ask if you can bring someone. Or just bring someone,” he recommended. Tell that person about the history of the organization, what happened at the last meeting or gathering, and anything else you know.

People living with HIV, particularly those most marginalized, are not waiting to be invited to the table. Some, like Abif, are bringing their own table to the table. Others are creating their own table, conducting research on the issues that impact them most. In 2015, sex workers and trans people published Nothing About Us Without Us: Sex Work, HIV Policy Organizing, Transgender Empowerment. The report is the first of a series and explores the ways in which HIV policies impact trans people who are sex workers or are profiled as sex workers.

That same year, the Transgender Law Center launched Positively Trans, a project to develop self-empowerment and advocacy by and for trans people living with HIV. The project conducted its own research about the experiences and challenges facing trans women living with HIV. Researchers were the trans people directly impacted; they reached out to hundreds of people, gathering partial responses from more than 400 trans people and complete responses from 157. In March 2016, Positively Trans published its first report, finding economic and systemic disparities for trans people, including the fact that the majority of trans women who are U.S. citizens earned less than $23,000 a year, more than 40% had been incarcerated in their lives and 69% had experienced HIV-related discrimination. The Center is also offeringdigital storytelling sessions, allowing people with HIV to tell their own stories instead of having them mediated by a third party.

“We need to prioritize the most impacted people,” declared Maxx Boykin, an organizer at AIDS Chicago and an organizing co-chair of the Chicago chapter of Black Youth Project 100, a national organization of young black activists. “Don’t tell them what they need. Listen — so they can tell you.”

Victoria Law is a freelance writer and editor. Her work focuses on the intersections of incarceration, gender and resistance. She is the author of Resistance Behind Bars: The Struggles of Incarcerated Women.

USA: Criminalisation advocates explain why using the right language is key to success

Jennie Smith-Camejo, the communications director of Positive Women’s Network – USA, stood at the podium at the second HIV Is Not a Crime conference on HIV criminalization in May. Behind her was a PowerPoint presentation with several examples of recent egregious headlines about people living with HIV.

“Woman With HIV Convicted of Biting Sister During Fight,” screamed one. “Man With HIV Assaults Hospital Employee,” read another. “Suspect Threatens to Transmit HIV to Police Officer,” announced a third.

“You don’t really hear [much] about HIV in the news anymore,” Smith-Camejo noted as she flipped through these headlines. “So, if these are what you’re seeing and hearing, what would you think?”

That is the challenge for people fighting HIV criminalization laws. How do you push past the fear and panic around HIV transmission when click-bait headlines dominate media coverage?

There’s no one opinion about what kind of messaging is most effective. For some, using language that appeals to their audience’s core values has been effective. Others reject that strategy, instead demanding more inclusive, intersectional messages that do not leave out the most vulnerable, such as sex workers and trans people.

“When you’re talking to people outside the HIV community, you have to think about what they’re thinking and hearing,” stated Jennie Smith-Camejo, the communications director of Positive Women’s Network – USA, an advocacy network of women living with HIV. “People’s views on policies and issues are more shaped by emotion than reason,” Camejo-Smith noted. But advocates have the power to appeal to these emotions. Using stories can change hearts and minds in ways that cold hard facts often do not, she said.

Jennie Smith-Camejo gives one example of messaging that appeals to a more conservative audience. When talking to people who may not care about the injustices of police profiling of trans women or HIV criminalization, she points to the way in which Cyd Nova, the harm reduction coordinator at the Saint James Infirmary, a clinic for current and former sex workers, frames the issue of policing as one that interferes with personal responsibility and protecting public health:

Trans women are disproportionately profiled and targeted by law enforcement for harassment and arrest. And because of policies like [using] condoms as evidence, trans women often face a choice between protecting themselves and their partners from HIV and risking arrest.

Effective messaging can sometimes prevent a harmful legislative amendment from even reaching the floor.LaTrischa Miles is a board member of Positive Women’s Network – USA, as well as the founder and president of Grace, a faith-based support group in in Kansas City for women affected by and living with HIV. When she learned that Missouri legislators planned to introduce a bill that would make it a crime for a person with HIV to spit at someone, she and other activists sprang into action. They contacted legislators and debunked the myths about saliva and HIV transmission. “Because they heard from us in the community, they didn’t even bring it forward for the hearing,” Miles recalled.

In Colorado, members of the Mod Squad and Senator Pat Steadman utilized language that appealed to a broader political spectrum as they pushed SB 146, a bill that repealed two criminalization statutes and reformed another. Instead of talking about criminalization as an injustice that needed to be eliminated, Steadman appealed to conservative values, such as personal responsibility. “We talked about barriers that criminalization poses to testing, treatment and public health,” Steadman stated in a celebratory address. “The biggest thing to take on is people’s fear and ignorance.”

To combat stigma and hammer home the importance of changing the law, Steadman’s talking point became: “The criminal law is a clumsy and ineffective tool for protecting public health.”

Advocates also shifted their messaging. Barb Cardell, a long-time HIV activist and member of the Colorado Mod Squad (“Mod” is short for modernization), recalled that the group had initially called themselves the HIV Decriminalization Task Force, then the STI Grassroots Modernization Alliance.

“We didn’t change anything else we were doing,” recalled John Tenorio, a rural Mod Squad member. Simply changing their name brought them more respect and support.

In Colorado, it appears that the shift worked. Steadman and the Mod Squad faced little opposition to repealing and reforming the criminalization statutes. (Instead, Steadman noted, the sticking point was the provision allowing minors to be tested and treated for HIV without parental consent.) SB 146 passed in both houses of the legislature and is now awaiting the governor’s signature.

But not everyone agrees with shifting the message to appeal to more conservative audiences. “You have to think about decriminalization — true repeal of these outrageous laws. Don’t talk to me about modernizing things to make them sound better. I am not here to wait years and years and years for this to happen,” said Maxx Boykin, an organizing co-chair of the Chicago chapter of Black Youth Project 100 (BYP100), a national organization of 18- to 35-year-old black activists, and a community organizer at AIDS Chicago. He tied HIV criminalization to the pervasive state violence against black people, particularly black youth. “You have to stop criminalizing who I am, who my friends are.”

Appeals to modernize laws will not stop the collision of criminalization faced by those marginalized by race, gender identity and poverty, he explained. “I have to talk about how [criminalization] disproportionately affects black people,” Boykin told TheBody.com. He draws parallels between HIV criminalization laws and the disparities in crack-cocaine sentencing. It’s a parallel that those already organizing against police and state violence understand all too well.

He also challenges people to think about criminalization as a whole, tying HIV criminalization to issues of racism and mass incarceration as well as explaining how people living with HIV are treated in prison and what HIV criminalization actually looks like.

Marco Castro-Bojorquez, a documentary filmmaker, community organizer and member of the steering committee for the U.S. People Living With HIV Caucus, arrived in the United States from Mexico 20 years ago. For him, an intersectional analysis needs to be present in every discussion.

“It’s difficult to talk to people about race and class,” he told The Body.com. “But you need to do it when talking about any injustice.” These conversations can be difficult, he acknowledged. “White people get offended or angry or sad,” he said. For them, he said, “it’s important to check your privilege and make sure you are not making us [people of color] responsible for your feelings. People don’t understand the amount of energy it requires for us [to explain racism and other injustices we face].”

He concentrates his energies on working with people who feel the brunt of marginalization the most — people of color, immigrants and trans people. In 2015 he helped launch Venas Abiertas: Una Red de Inmigrantes Latinxs Viviendo con el VIH/Sida (Open Veins: A Network of Latinx Immigrants Living With HIV/AIDS) for HIV-positive Latino immigrants to advocate for their needs and work with allies.

When Castro-Bojorquez talks about HIV criminalization, he’s often met with shock that such laws even exist. He recalls repeated conversations with his best friend. “He could not believe you could have sex with someone, use a condom, not transmit anything and still be thrown in jail,” he recounted. The two continued to have conversations about criminalization — and Castro-Bojorquez’s work to end it. “Now he’s super-knowledgeable about it,” he said.

Castro-Bojorquez also cautions against the tendency to characterize certain statutes as “not so bad,” explaining that “any law that criminalizes HIV is bad.”

Regardless of the words they choose, advocates say the message needs to be clear and not veer into other topics. Mark King, the blogger behind My Fabulous Disease, learned this firsthand.

In 1992, when Magic Johnson first announced that he was living with HIV, King was the newly appointed communications person for the Los Angeles Shanti Foundation, which provided emotional support for people dying from AIDS-related complications. Johnson’s announcement inevitably sparked office gossip, including speculation about which AIDS organization Johnson might endorse as well as the fact that Elizabeth Taylor had sent Johnson flowers, King recalled. That gossip was still buzzing when the phone began ringing with press requests. “I was young and stupid,” King recounted and, when he spoke with a reporter from the Los Angeles Times, he began chattering away, repeating the office gossip.

The next day, the Los Angeles Times ran King’s statements about Elizabeth Taylor and the rivalry for Johnson’s support among AIDS organizations. “I gave the reporter the story he wanted to write — about the competition among agencies — rather than the message I was supposed to deliver,” King recalled 24 years later. The lesson? “Hold on tight to your message and repeat it over and over so they can’t put in some stupid quote about Elizabeth Taylor.”

Originally published in The Body

Key HIV transmission study shows no risk to HIV-negative partner when person with HIV is on suppressive antiretroviral therapy

By Simon Collins, HIV i-Base

Tuesday 12 July 2016

Published to coincide with IAS 2016 conference that opens in Durban next week, the PARTNER study showing the impact of HIV treatment (ART) on reducing transmission will benefit millions of people globally.

The results set a new challenge about whether transmission is anything other than a theoretical risk when someone is taking effective ART. This reverses the common assumption that, by definition, some level of risk always exists when one partner is HIV positive.

The PARTNER study provides good evidence that undetectable viral load might be a threshold below which sexual HIV transmission does not occur. The importance of the PARTNER study is that it included both gay and straight couples, that it measured risk in people who were not using condoms and that it estimated absolute risks.

Previous studies have been almost exclusively in heterosexual people who still reported high rates of condom use. The PARTNER study provides more than three times the amount of follow-up time from people not using condoms than all the previous studies combined. This includes 500 couple-years of follow up from people having anal sex without condoms.

Methods

Between September 2010 and May 2014 the PARTNER study prospectively enrolled 1166 serodifferent couples at 75 clinical sites in 14 European countries. Entry criteria included that the positive partner had an undetectable viral load on ART and that the couple were not always using condoms when they had sex.

Follow-up included routine sexual health checks (including HIV testing for the negative partners) and each participant also completed sexual history questionnaires to look at risk for different activities. Couples were only included in the final analysis when the most recent viral load for the positive partners was undetectable – defined as <200 copies/mL. The primary endpoint was the rate of within-partner transmissions, determined by phylogenetic analyses for all couples in which the negative partner became positive.

Results

Of 1166 couples enrolled, 1004 couples had at least one follow-up visit and 888 couples provided 1238 couple years of follow-up (median 1.3 years (IQR 0.8 to 2.0) per couple. This included 548 heterosexual (HT) couples and 340 gay male couples. The main reasons for data not being included in the follow-up analysis was: not yet reaching first follow-up visit (n=162), lack of HIV test (n=20), use of PEP or PrEP (n=9), no condomless sex (n=15), viral load >200 copies/mL (n=55) and lack of viral load result (n=17). There were no significant differences between couples who contributed to follow-up data compared to those who didn’t.

Although 11 people became HIV positive, none of these infections were phylogenetically linked transmissions. This was after at least 58,000 distinct times when couples had penetrative sex without condoms.

Baseline demographics were reported – as with all results – by categories of HIV status, gender and sexuality, with some differences between groups. This makes summarising results complex, but the median age ranged from 40 to 44 (with IQR overall ranging from 31 to 50 years). Gay men and HT women were a few years younger than HT men. Approximately 80% of the HT men were white compared to 70% of women and 90% of gay men. A higher percentage of gay men had education to college/university or higher (approximately 50% compared to 19% to 35% for heterosexuals. Although some of these differences were significant, other than there were fewer very young adults involved, they reflect the diversity of people living with HIV.

HIV positive partners had been on ART for a median of 10.6 (IQR: 4.3 to 15.6), 7.5 (IQR: 3.3 to 14.2) and 4.8 (IQR: 1.9 to 11.4) years, for HT men, HT women and gay men respectively. At baseline, couples reported having had sex without condoms for a median of 2 years (IQR 0.5 to 6.3), with differences between groups. For example, straight couples had been having sex without condoms for roughly 3 years (IQR 0.7 to 11 years) compared to 1.5 years (IQR 0.5 to 4 years) for gay couples. Approximately 23% of couples were in new/recent relationships (<6 months). Self-reported adherence to ART was similarly high at >90% in the three positive groups. Similar proportions of each group also had CD4 counts >350 cells/mm³ (85% to 91%).

Based on data from the negative partners, overall, couples reported having sex without condoms a median of 37 times a year (IQR 15 to 71), with gay couples (median 41; IQR 17 to 75) reporting condomless sex at least 22,000 times and heterosexual couples (median 35; IQR 13 to 70) more than 36,000 times. These were rough estimates from recall and partners did not always report the same numbers. Some couples reported sex outside the main relationship: 108 gay couples (33%) and 34 heterosexual couples (4%).

None of the 11 incident HIV infections in negative partners (ten gay and one heterosexual) were phylogenetically linked to the positive partner. Most people (8/11) reported having sex without condoms with people outside the main relationship. All samples (n=22) were successfully sequenced for pol and 91% (n=20) were sequenced for env. None of the partner sequences clustered together and the results were consistent after using using several different analyses. Additional details for these analyses are described in the online supplementary material. [2]

With zero transmissions, the upper limit of the 95% confidence interval (95%CI) for the overall study was 0.3 per 100 couple years of follow up (CYFU). Each category of specific risks, given that the calculations are a factor determined by study numbers and power, had different upper 95%CI boundaries: for example, 0.88 for HT sex overall vs 0.84 for gay sex overall.

This means that the upper 95%CI for receptive anal sex for gay men (2.70 with ejaculation and 1.68 without ejaculation) needs to be interpreted as a factor of sample size: there were fewer CYFU so the upper limit is by definition higher. While this calculation is developed to define the potential range within which the true risk might lie, the 95%CI should not be interpreted as indicating a risk that has been observed in the study. To illustrate this difficulty, the higher estimated risk for heterosexual anal sex with upper 95%CI of 12.71 and 8.14 (with and without ejaculation, respectively) are driven by fewer CYFU with this as the primary risk rather than any biological reason for this to be much higher. Of note though, more than 20% of straight couples reported anal sex.

The ongoing PARTNER 2 study continues to follow up gay couples in the PARTNER study and to recruit additional gay couples, in order to produce a similarly powered evidence base for gay mean as for straight couples, with follow up until 2019. [2]

Also of note during the study, 91 HIV positive partners reported other STIs (n=16 HT men, 16 HT women and 59 gay men) – closely matching STIs in the negative partners, also without any increased risk reported for HIV transmission.

An non-technical i-Base Q&A on these results is also online. [3]

An extension of the PARTNER study is continuing to collect further data on risk for gay men. [4]

Simon Collins is a community representative on the steering committee of the PARTNER study.

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These results are simple to understand – zero transmissions from over 58,000 individual times that people had sex without condoms. They are also notable for the complexity of the analysis that was needed to prove that none of the new diagnoses were linked transmissions from within the couple.

Together, this provides the strongest estimate of actual risk of HIV transmission when an HIV positive person has undetectable viral load – and that this risk is effectively zero. While no study cannot exclude the possibility that the true risk might lie within the upper limit of the 95%CI, even if the true value is actually zero due to some as yet unproven mechanism, the 95%CI can never be zero, just becomes increasingly close. Neither the presence of STIs nor likely viral load blips between tests had any impact in enabling transmission.

The results provide a dataset to question whether transmission with an undetectable viral load is actually possible. They should help normalise HIV and challenge stigma and discrimination.

The results challenge criminalisation laws that in many countries, including the United States, continue to imprison hundreds of people based on assumptions of risk that these results disprove, even when condoms are used and viral load is undetectable.

Activist Sean Strub, from the SERO project (www.seroproject.com) said:

“Hundreds of people living with HIV in the US have been charged with criminal offences for the perceived or potential risk of HIV exposure or transmission. Some are serving or have served long prison sentences for spitting, scratching or biting and others for not being able to prove they had disclosed their HIV positive status before having sexual contact (even in the absence of any risk of HIV transmission). HIV criminalisation has created a viral underclass in the law, further burdening a disenfranchised community, putting a disproportionate share of the shared responsibility for preventing sexually-transmitted infections on one party, and discouraging people at risk from getting tested for HIV.”

The results will also positively impact on the quality of life for both HIV positive and HIV negative individuals who are in serodifferent relationships, irrespective of the choice to use condoms.

The ongoing PARTNER 2 study is continuing to follow-up gay couples and is still enrolling new couples to achieve a similar statistical power for anal sex compared to vaginal sex. For further details of sites please see the PARTNER2 website. [3]

Reference

Rodger AJ et al for the PARTNER study group. Sexual activity without condoms and risk of HIV transmission in serodifferent couples when the HIV-positive partner is using suppressive antiretroviral therapy. JAMA, 2016;316(2):1-11. DOI: 10.1001/jama.2016.5148. (12 July 2016). Full free access.
http://jama.jamanetwork.com/article.aspx?doi=10.1001/jama.2016.5148
PARTNER study, supplementary material. JAMA (16 July 2016).
i-Base Q&A from the study.
http://i-base.info/qa-on-the-partner-study/
PARTNER2 website.
http://www.chip.dk/PARTNER-2

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