In 1987, the United States introduced the world’s first laws criminalizing HIV. Today, despite scientific evidence that HIV criminalization harms public health, 92 countries still have laws that are used to prosecute people living with HIV.
In this episode of HIV unmuted, the IAS podcast, we hear how these unjust laws have forever changed the lives of three people living with HIV and what must be done to end the criminalization of HIV.
Listen now to their stories of injustice, fear and stigma:
- Edwin Cameron on being South Africa’s first public figure to speak out about living with HIV and his crusade to decriminalize HIV
- A Malawian mother, known as EL, who was jailed for allegedly breastfeeding another woman’s baby, as told by her lawyer, Wesley Mwafulirwa
- American Robert Suttle on how a bad breakup led to his imprisonment and registration as a sex offender.
Edwin Cameron, retired Constitutional Court Judge, South Africa
Edwin Cameron retired as a Judge in August 2019 after 25 years’ service, the last 11 in South Africa’s highest court, the Constitutional Court. He had served in the Supreme Court of Appeal for eight years and the High Court for six. He was educated at Pretoria Boys’ High School and Stellenbosch University and as a Rhodes Scholar at Oxford. During apartheid, Cameron was a human rights lawyer. He fought for LGBTIQ equality and helped achieve the historic inclusion of sexual orientation in the South African Constitution. As a person living with HIV, he was a fierce critic of President Thabo Mbeki’s AIDS denialist policies. His prize-winning memoirs, Witness to AIDS (2005) and Justice: A Personal Account (2014), have been translated into German, Korean and Chinese. He holds honorary degrees from seven universities. In 2019, he was elected Chancellor of Stellenbosch University and appointed Judicial Inspector of Correctional Services.
Wesley Mwafulirwa, Kawelo Lawyers, Malawi
Wesley Mwafulirwa is the co-founder of Kawelo Lawyers in Malawi and one of the most prominent lawyers in Malawi. He is known for winning big cases, which have brought him international recognition and awards, as well as his pro bono work in HIV and criminal injustice. One of his pro bono cases was that of EL’s, a woman living with HIV in Malawi who was jailed for breastfeeding another woman’s baby. In the podcast, we speak to Mwafulirwa about how he overturned EL’s unjust conviction. Her full story can be read here.
Robert Suttle, HIV racial justice leader, USA
Robert Suttle is an HIV racial justice leader. He has cultivated relationships with other cross-movement leaders, collectively advocating for meaningful involvement of most-impacted communities, and connecting advocacy to decriminalize HIV with other movements around prisons, policing and criminalization.
Suttle is a Louisiana native and graduate of Louisiana State University in Shreveport. He worked for the Louisiana Second Circuit Court of Appeal until he was dealt a grossly unjust HIV prosecution and conviction. Instead of retreating, he became a sought-after speaker and leading national advocate, being perhaps the first person with HIV anywhere who was prosecuted for an HIV crime and went public to raise awareness and mobilize advocacy for change.
Suttle serves as an advisor on the HIV Justice Network’s Global Advisory Panel (GAP). He is former assistant director of the Sero Project, a US-based network of people living with HIV advocating for the end of HIV criminalization and featured in the Sero short film, HIV is Not a Crime. Before joining Sero in March 2012, Robert worked as a case manager and prevention specialist at the Philadelphia Center in Shreveport, Louisiana.
Read the transcript
HIV unmuted: Episode 4 transcript
Femi Oke: Welcome to HIV unmuted, the IAS – International Aids Society – podcast. I’m your host, Femi Oke.
Our last episode focused on the doctor with the Magic touch.
Dr David Ho, Magic Johnson’s personal physician, has helped save millions of lives due to his pioneering HIV treatment breakthroughs in the 1990s.
But despite huge scientific progress, people living with HIV in many places are criminalized because of their HIV status.
HIV criminalization laws exist in 92 countries worldwide. In the US alone, more than 30 states still enforce these laws.
Edwin Bernard, HIV Justice Network: HIV criminalization is a growing, global phenomenon, and it’s increasingly recognized as a key public health and human rights issue.
Femi Oke: Breastfeeding a baby. Having sex with your partner. As we will hear, these most human of human endeavours can land a person living with HIV in jail.
But first, let’s go back to the late 1980s. America had just introduced the world’s first HIV criminal laws based on the misguided belief that they would reduce HIV transmission. Instead, these laws drove people living with HIV underground and away from HIV services. Other countries quickly followed America’s lead.
In South Africa, amidst apartheid and continued political apathy for HIV, Edwin Cameron was a rising human rights lawyer.
Justice Edwin Cameron would later become one of South Africa’s most high-profile legal minds and advocates. But at the time, he was living with a deep dark secret.
Edwin Cameron: I was diagnosed in December 1986. And it was a very bleak time for everyone living with HIV and worse was the fact that to my 33-year-old self, this was a certain death sentence. This was perhaps the most stigmatized, shameful disease, I think, in human history.
Femi Oke: Edwin fell into the grip of self-shame and stigma. And yet, living with his secret, he continued to help those whose HIV status was known.
Edwin Cameron: Mineworkers’ wives came and told me in my office, where I was working as a human rights lawyer, that they felt the same shame and stigma as I did. It was a difficult period and I battled for a long time.
Femi Oke: Edwin buried his secret for more than a decade until the death of two HIV activists spurred him to speak out.
Edwin Cameron: Two things happened. A friend of mine, Simon Tseko Nkoli, a very brave man who laid the path for us to secure sexual orientation in the South African Constitution, died in December 1988. Later, someone very different from Simon – a woman called Gugu Dlamini in a township in Durban – spoke out on Zulu public radio about the fact that she was living with HIV. She was beaten and stoned and stabbed to death.
Femi Oke: But what would happen when Edwin revealed his secret?
Edwin Cameron: I was terrified, but the reception was overwhelmingly loving, positive, affirming. It was the right moment. From all over Africa, people still recognize me. One of the paradoxes of my speaking out is that no one else in a public position in Africa has done that in the 22 years since I did it. And I think it’s to do with internalized shame.
Femi Oke: Missing from the conversation was the founder of South African democracy, Nelson Mandela.
Edwin Cameron: Mandela was dealing with unspeakably enormous problems of the racial transition from injustice to constitutional democracy. But he was also seduced by the world of favour and fame … while he was spending time with the Spice Girls, he was not giving time to AIDS.
Femi Oke: To make matters worse, Mandela’s successor, President Thabo Mbeki, chose denialism over science.
President Thabo Mbeki: “See, so when you ask the question, does HIV cause AIDS, the question is, does a virus cause a syndrome? How does a virus cause a syndrome? It can’t.”
Edwin Cameron: So, it was a catastrophe for our young democracy. And it was a catastrophe that President Mbeki couldn’t accept, and people got his ear, people who believed rubbish, awful, appalling, incoherent, irrational, unscientific, completely unevidenced theories about AIDS and HIV.
Femi Oke: Over the years, Mandela became more outspoken on HIV, particularly in 2005, when his son died of AIDS-related causes.
Edwin Cameron: He was absolutely magnificent. When his own son, his eldest son, Makgatho, died, the family did not want to state the cause publicly. It was Mandela who said, we must state the cause publicly. “Makgatho Mandela, my beloved eldest son, died of AIDS.” We can never repay that debt to Mandela for what he did.
Femi Oke: Edwin has experienced a lot in his lifetime: internalized fear and shame, a government rejection of science, HIV denialism and violence. But through it all, he has continuously campaigned to end HIV as a crime.
Edwin Cameron: It’s irrational, it’s harmful, it’s counterproductive. It’s completely unwarranted. It is unscientific, it’s unjustified, but it still exists across large parts of Africa and the rest of the world.
Femi Oke: Thankfully, Edwin is not alone in fighting the injustice of HIV criminalization. Human rights lawyers all over the world take on these cases, often pro bono.
Wesley Mwafulirwa: My name is Wesley Mwafulirwa. I am a Malawian human rights lawyer.
Femi Oke: In 2016, Wesley had just attended a human rights workshop when he read a newspaper article about a woman living with HIV, who had been jailed for … breastfeeding.
This woman is now known simply as EL to protect her identity.
Wesley Mwafulirwa: I read in the paper that this lady from Zumba was convicted for breastfeeding a baby. She was holding onto her own baby. And then someone came with another baby. I think the baby was crying or something. So, they said, can you please hold on to my baby? The other kid suckled on her breasts and suckled the milk. She didn’t do it deliberately; it was accidental.
Femi Oke: The village was small, which meant everyone knew EL’s business.
Wesley Mwafulirwa: It’s a rural community. They know that she’s on ARVS. So, when the mom came, she said … your baby accidentally suckled on my breast. My baby suckled on your breasts … means you most likely transmitted HIV to my baby.
Femi Oke: Neither EL’s child nor this other woman’s baby acquired HIV from breastfeeding, not from a momentary suckling or long-term feeding. But under the law, that didn’t matter.
Wesley Mwafulirwa: The conduct was criminal according to Section 192 of our penal code. And the way that provision is written, it simply says that if you engage in an activity that is likely to transmit a disease dangerous to life, then you will be liable to criminal sanction.
Femi Oke: EL was arrested and brought before the court. Without an attorney to advise her of her rights under the law, EL pleads guilty.
Wesley Mwafulirwa: She was sentenced to 17 months in prison with hard labour.
Femi Oke: This is the point in time when Wesley discovered the case and drove 10 hours to meet his new client.
Wesley Mwafulirwa: Malawian prisons are not the place you want to be. She was there with the kid, less than two years old, so it was a really bad condition. A sad moment for me was that until I explained to her, she didn’t actually realize that she was innocent because in the community, they made out that she was wrong.
The first stage was to apply for what we call a bail pending appeal. And we were successful. She was released on bail pending appeal.
Femi Oke: With EL and her baby safely out of prison on bail, Wesley dove into the evidence.
Wesley Mwafulirwa: The evidence that the prosecution had given in court was that breastfeeding was likely to lead to the transmission of HIV. Immediately, I contacted the experts and other international organizations. They said, no, no, this is not a good case. They convicted her based on very wrong facts; scientifically there is very little chance of transmission of HIV through breast milk.
Femi Oke: Thankfully, EL’s conviction was overturned. But there was concern that the damage had already been done. Hoping to make EL’s return home smoother, Wesley sought help to educate her community about HIV.
Wesley Mwafulirwa: We also managed to get some funding for psychological support. We engaged the community, the chiefs and so on and so forth. And now she’s okay. She’s good.
Femi Oke: Imprisoned for breastfeeding. Sentenced to hard labour while still nursing her own baby. Just one example of the injustice of HIV criminalization.
Edwin Cameron: I must say that Wesley’s account touches me very profoundly. And she thinks that she is guilty, and this is part of the huge problem that we deal with in HIV and AIDS.
I’m someone living with HIV. Let me tell you this – and it’s the first time I’m saying it on public record: I didn’t always tell my sexual partners long ago, before I was in a committed relationship, that I had HIV. Why not? Because we never did anything that put them at risk. And yet I ended up feeling guilty. So, I count myself lucky that I wasn’t jailed for non-disclosure: completely irrational, punitive stigmatized laws that, in turn, enact stigma.
Femi Oke: Wesley now sees that HIV criminalization is not just unscientific, but harmful to public health.
Wesley Mwafulirwa: I used to be one of the people who – maybe if you asked me the question 10 years or so ago – would say, You know what? If someone is HIV positive, take them to prison if they do some funny things. I now understand this from a scientific perspective, to say criminalization just makes things worse.
Edwin Cameron: It’s still irrational to target people with HIV and to persecute them because it is counterproductive. It makes them scared to come forward for testing and treatment and diagnosis. And an untreated and undiagnosed person with HIV is much more of a public health liability than someone who is tested, someone who is counselled, someone who has got the offer of support.
Femi Oke: We now hear from Robert Suttle, a Black man from the American southern state of Louisiana. Like EL, he knows the cost of HIV criminalization.
Robert Suttle: I am originally from Shreveport, Louisiana. I was born in a low-income community, pretty much raised by my grandparents because my mother had me at a very young age, at the age of 13.
Femi Oke: Robert was about to graduate from university and was exploring the military as a career option. It was during the enlistment process that he was given news that would change his life.
Robert Suttle: I thought I was fine until I received a letter in the mail that stated that I needed to come back and meet with the medical director.
I found myself trying to think of what it could be, even though I didn’t really have any clues. When I went finally, I was told that I was HIV positive.
Femi Oke: In the American south, being gay wasn’t easily accepted and HIV was definitely taboo.
Robert Suttle: Parents will put their kids on blast, as they say, saying, you’re not going to be living in my house with this, or the Bible says this, or you’re not supposed to be living this way. A lot of young people and young gay black men and women still live under this type of oppression. When you couple that with being HIV positive, it creates a greater hardship.
Femi Oke: It was against this backdrop that Robert met someone on New Year’s Eve, 2008.
Robert Suttle: I engaged with someone that I wasn’t as familiar with but knew of, and this person just happened to come out that particular night for New Year’s. And obviously we connected, and connected more on an intimate level. But prior to that, I felt that I disclosed my status to the individual, that I was HIV positive.
That relationship lasted for about three months, but then we decided to end the relationship.
Femi Oke: It had been a short romance. Robert continued his daily life, working at the local courthouse as a clerk. But soon after, his ex reached out.
Robert Suttle: He contacted me again and asked me about my HIV status. And I did not deny my status even then. And as a result, he became even more upset with me than he was before. He threatened that he was gonna press charges against me if he tested and was HIV positive.
Femi Oke: Robert still doesn’t know if his ex ever tested positive. Though Robert says he told his ex about his HIV status, the case would come down to one man’s word against another.
Robert Suttle: From there, of course, I was contacted by sex crime detectives. They came and checked out my home and took items that they thought would tie to the fact that I was living with HIV … in other words, looking for evidence.
It was then that I knew that this was unravelling and becoming something very serious.
Femi Oke: Robert was arrested at work – in the courthouse.
Robert Suttle: How could I go from a law-abiding citizen to living with HIV and because I’m gay and having sex … how did it get here? Every day, I would wake up with pains in my stomach because of what was going on. You can’t make decisions, you can’t go anywhere.
Femi Oke: Broken, scared, facing a long prison sentence, Robert agreed to plead guilty.
Robert Suttle: It is common for people to accept a plea bargain. You don’t know what the outcome is going to be. You just know you want it to be over. And so, it puts you in a position where you try to accept the best possible outcome.
Femi Oke: Robert served 180 days in jail. He has now been out of prison for nearly two decades. But his conviction still haunts him every day.
Robert Suttle: I had to have the word “sex offender” on my driver’s license in big red letters. Can you just imagine how that might’ve felt? I have nieces and nephews and I wanted to be able to go visit them at school or help out. But because I was subjected to the registry, I knew that would be problematic.
Femi Oke: This experience changed Robert’s life. He is now an advocate for ending the criminalization of HIV.
Robert Suttle: It has really opened up my eyes to so much. I’m grateful for that because I feel like I needed to understand the truth of, as a black man, as a black gay man, living with HIV. And as a person that’s formerly incarcerated, I needed to see what position I had in this life, in this world, in this country. I’m more conscious and aware of injustices that exist. And I’m still learning a lot about how we get here as a country and as a people. But I’m grateful for it.
Femi Oke: Robert and EL’s stories are just two of thousands. In 2020 alone, the HIV Justice Network documented at least 90 unjust HIV criminalization cases across 25 countries.
Here’s a final thought. Governments introduced HIV criminalization in efforts to counter public panic.
But more than 30 years since the first law was passed, there has been no evidence that criminal law reduces HIV transmission.
Instead, as we have heard from Edwin, Wesley and Robert, what is proven is that HIV criminalization fuels fear and stigma – the very things Robert now uses his voice to fight against.
Robert Suttle: You do as much as you can to get as far as you can, and just hope that the outcome would be where people living with HIV can live with their dignity and not be labelled and considered criminals simply because they are HIV positive.
Femi Oke: The message is clear: HIV is not a crime.
The law must change to follow the science. And we all have a part to play. Fortunately, change is happening. As a result of EL’s case and community activism, Malawi’s new HIV law, enacted in 2018, no longer includes HIV criminalization provisions. And in America, the state of Illinois has recently made moves to repeal its HIV criminal laws.
There are many more to go. Our defence of people living with HIV cannot rest.
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This is HIV unmuted, and like our title says, you can’t keep us quiet.
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Discover the IAS Heart of Stigma programme
IAS – the International AIDS Society – recognizes that stigma is a major impediment to the collective response against HIV.
In 2020, the IAS launched Heart of Stigma to consolidate the evidence base in order to enhance our collective knowledge on HIV-related stigma and the effectiveness of stigma-mitigation efforts. Specifically, this work focuses on consolidating the evidence base on efforts to measure HIV-related stigma at the individual level (self), in healthcare facilities (service) and within laws and policies (structures).
Find out more about HIV criminalization via the HIV Justice Network
The HIV Justice Network is a global information and advocacy hub for individuals and organizations working to end the inappropriate use of the criminal law to regulate and punish people living with HIV.
Find out more at hivjustice.net
Join Elizabeth Taylor AIDS Foundation’s campaign to end HIV as a crime
HIV is not a crime, but in more than 30 US states, people are being imprisoned due to their HIV status. The Elizabeth Taylor AIDS Foundation is on a mission to modernize these laws to align with contemporary science.
Join the campaign at hivisnotacrime-etaf.org