Livestream: Beyond Blame – Challenging HIV Criminalisation: Plenary 2 (HJN, 2018)

Welcome to BEYOND BLAME – Challenging HIV Criminalisation, live from De Balie in Amsterdam, 23 July 2018.

11:20 – 12:10 What About Human Rights? The Benefits and Pitfalls of Using Science in Our Advocacy to End HIV Criminalisation Facilitator: Laurel Sprague (UNAIDS) With: Chris Beyrer (John Hopkins Bloomberg School of Public Health), Edwin Cameron (Constitutional Court of South Africa), Richard Elliott (Canadian HIV/AIDS Legal Network), Lynette Mabote (ARASA), Paula Munderi (IAPAC)

12:10 – 13:00 Women and HIV Criminalisation: Feminist Perspectives Facilitator: Naina Khanna (Positive Women’s Network – USA) With: Sarai Chisala-Tempelhoff (Women’s Lawyers Association, Malawi), Michaela Clayton (ARASA), Kristin Dunn (AIDS Saskatoon), Deon Haywood (Women With A Vision)

New report from the Global Commission on HIV and the Law states that discrimination and punitive laws hamper the global HIV response

Bad laws and discrimination undermining AIDS response

AMSTERDAM, July 22 – Discrimination against vulnerable and marginalized communities is seriously hampering the global effort to tackle the HIV epidemic according to a groundbreaking new report by the Global Commission on HIV and the Law. Despite more people than ever before having access to antiretroviral treatment, the new report emphasizes that governments must take urgent action to ensure rights-based responses to HIV and its co-infections (tuberculosis and viral hepatitis). The new report comes on the eve of the biannual global AIDS conference, which is taking place in Amsterdam.

The Global Commission on HIV and the Law – an independent commission convened by UNDP on behalf of UNAIDS – operates with the goal of catalyzing progress around laws and policies that impact people affected by HIV. In 2012, the Commission highlighted how laws stand in the way of progress on AIDS while citing how to institutionalize laws and policies that promote human rights and health. The 2018 supplement to the Commission’s original report assesses new challenges and opportunities for driving progress on HIV, tuberculosis and viral hepatitis through evidence and rights-based laws and policies.

“Progress on tackling the AIDS epidemic shows that when we work together we can save lives and empower those at risk,” said Mandeep Dhaliwal, the Director of Health and HIV at UNDP. “However, the new report is also a warning that unless governments get serious about tackling bad laws, the overall AIDS response will continue to be undermined and we will fail those who are left behind.”

For the past six years, the Global Commission has made clear how marginalized groups are continually left behind in the global HIV response. Men who have sex with men, people who use drugs, transgender people and sex workers face stigma, discrimination and violence that prevents their ability to receive care, and LGBT populations are still under attack in many countries around the world.

Young women and adolescent girls are also uniquely affected by HIV and are not receiving adequate care. In 2015, adolescent girls and young women comprised 60 percent of those aged 15 to 24 years living with HIV and almost the same percentage of new HIV infections were among this cohort. Sexual and reproductive health care, including HIV testing and treatment, have consistently been kept out of the hands of the women and girls who need them.

“Global politics are changing, and repressive laws and policies are on the rise,” said Michael Kirby, former Justice of the High Court of Australia. “In recent years, political trends have negatively impacted the global HIV response: civic space has shrunk, migrants don’t have access to health care, and funding has dropped.”

The report warns that shrinking civil society space due to government crackdowns is hampering the HIV response as marginalized groups are seeing key health services cut off. The fight against HIV, tuberculosis and viral hepatitis will only be won if civil society is empowered and able to provide services, mobilize for justice and hold governments accountable.

“In the wake of the ongoing global refugee crisis, borders have tightened and access to health services has been restricted for millions of migrants – exactly the opposite of what is needed,” said Dr. Shereen El Feki, Vice-Chair of the Commission. “Condemning people who have left their homes to seek safety strips them of their human rights and in the process increases their vulnerability to HIV and its co-infections.”

Refugees and asylum seekers are often at high risk of HIV and overlapping infections like tuberculosis, but harsh laws restrict health care access. Laws must change to ensure that everyone, no matter where they are from, can receive quality health services. The world is also still off track in funding responses to HIV, tuberculosis and viral hepatitis: in 2015 – the same year that countries adopted the 2030 Agenda for Sustainable Development and its pledge to leave no one behind – donor funding for AIDS fell by 13 percent. Sadly the small uptick in donor funding for HIV in 2017 is at best an anomaly.

Despite these challenges, UNDP together with its UN and civil society partners have helped 89 countries revise their laws to protect people’s health and rights since 2012. Successes include:

· HIV criminalization laws have been repealed in Ghana, Greece, Honduras, Kenya, Malawi, Mongolia, Switzerland, Tajikistan, Venezuela, Zimbabwe and at least two US states.

· Leaders are taking steps to address gender inequities to bolster the rights of women and girls who are disproportionately affected by HIV: Tunisia recently passed a law to end violence against women in public and private life, and Jordan and Lebanon have strengthened legislation on marital rape.

· Access to health care is being prioritized with emphasis on emerging illnesses that target people vulnerable to HIV, including Portugal instituting universal access to hepatitis C treatment in 2015, and France following suit in 2016. A court ruling in India led the Government of India to change its policy on who is eligible for tuberculosis treatment.

· Governments are taking steps to protect the rights of vulnerable groups: Canada, Colombia, Jamaica, Norway and Uruguay have decriminalized possession of small amounts of cannabis and Jamaica erased the criminal records of low-level drug offenders.

The success and sustainability of the global HIV response will be determined in large part by urgent action on laws and policies. The Commission calls on governments and leaders around the world to institute effective laws and policies that protect and promote the rights of people affected by HIV and its co-infections. Since 2012, there have been positive changes in transforming laws and policies, and advancements in science that make it possible to further accelerate progress. The future will be determined by legal environments that drive universal health and human dignity.

Media contact:

In Geneva: Sarah Bel, Communications Specialist, sarah.bel@undp.org, Tel: +41 79 934 1117

In New York: Sangita Khadka, Communications Specialist, UNDP Bureau for Policy and Programme Support, sangita.khadka@undp.org; +1 212 906 5043

The Global Commission on HIV and the Law is an independent body, convened by the United Nations Development Programme (UNDP) on behalf of the Programme Coordinating Board of the Joint United Nations Programme on HIV/AIDS (UNAIDS).

Additional information is available at www.hivlawcommission.org.

Published in UNDP website on July 22, 2018

Livestream: Beyond Blame – Challenging HIV Criminalisation: Opening Plenary (HJN, 2018)

Welcome to BEYOND BLAME – Challenging HIV Criminalisation, live from De Balie in Amsterdam, 23 July 2018.

09:00 – 09:10 Welcome remarks by Edwin J Bernard (HIV Justice Network) on behalf of HIV JUSTICE WORLDWIDE Followed by Laela and Naomi Wilding (The Elizabeth Taylor AIDS Foundation)

09:10 – 09:30 The Lived Experience: What it’s like to be personally impacted by HIV criminalisation and be part of the movement to end it Facilitator: Edwin J Bernard (HIV Justice Network) With: Chad Clarke (Canada), Marama Mullen (New Zealand), Ken Pinkela (United States), Ariel Sabillon (Honduras)

09:30 – 11:00 The Movement to End HIV Criminalisation Globally: Where Are We Now? Presentation by Edwin J Bernard (HIV Justice Network) Followed by panel and Q&A With: Kené Esom (UNDP), Diego Grajalez (CNET+ Belize), Cécile Kazatchkine (Canadian HIV/AIDS Legal Network), Svitlana Moroz (Eurasian Women’s Network on AIDS), Annabel Raw (Southern Africa Litigation Centre), Sean Strub (Sero Project), Omar Syarif (GNP+)

HIV criminalisation high on the agenda at AIDS 2018

Starting today, thousands of activists, scientists, media and others working in the HIV sector will descend upon Amsterdam for the 22nd International AIDS Conference (AIDS 2018).

For those of you able to be in Amsterdam make sure you don’t miss all the amazing HIV criminalisation events taking place before and during the conference.

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

STOP PRESS: For the first time since Edwin Cameron’s call to action at AIDS 2008 in Mexico City, HIV criminalisation is on the agenda during a main morning plenary session, ‘Breaking barriers of inequity in the HIV response’ on Tuesday 24th July.

HIV criminalisation survivor, and Sero Project Assistant Director, Robert Suttle, and KELIN’s Executive Director, Allan Maleche, will speak from 9.30am about, ‘Putting HIV science into the criminal justice system: Impacting lives’.

As well as highlighting the impact of HIV criminalisation on individuals, the session will alert AIDS 2018 delegates to the forthcoming ‘Expert Consensus Statement on the Science of HIV in the Context of Criminal Law’ that will be published on Wednesday 25 July 2018 at 3.15pm in the Journal of the International AIDS Society (JIAS).

The Expert Consensus Statement was authored by a global panel of leading scientists, supported by IAPAC, IAS and UNAIDS in consultation with HIV JUSTICE WORLDWIDE.

It is expected to be a key reference for clarifying important issues of HIV science in the context of criminal law and is aimed at expert witnesses, but likely to be useful for police, prosecutors, lawyers, judges, lawmakers and advocates.

You will be able to find out more about the Expert Consensus Statement, including what it means for HIV criminalisation advocacy, on Wednesday after 3.15pm Amsterdam time, by visiting http://www.hivjusticeworldwide.org where it will be highlighted on the front page.

And of course, we hope to see you at HIV JUSTICE WORLDWIDE’s one day conference this Monday July 23rd, Beyond Blame 2018: Challenging HIV Criminalisation.

Download the Beyond Blame 2018 final programme.

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

Otherwise you can watch the entire meeting live on the HIV JUSTICE WORLDWIDE YouTube channel and Tweet any comments or questions using the hashtag #BeyondBlame2018.

You can also the follow these other HIV criminalisation hashtags:

#HIVJUSTICEWORLDWIDE
#HIVCrim
#HIVIsNotACrime
#AIDS2018
#BringScienceToJustice

FOCUS ON EECA: Is Belarus the worst country in the world for HIV criminalisation?

Photo: Representatives of People PLUS at the Gomel Regional Court

Our EECA hub, the Eurasian Women’s Network on AIDS (EWNA), part of the GNP+ family, found that between January 2015 and June 2017, 128 criminal cases had been prosecuted under Article 157, Belarus’ overly broad HIV-specific criminal law.

The highest number of cases in the country were reported in the Gomel region. Between 2012 and 2016, 38 cases were reported. But in the first half of 2017 alone, at least 50 cases had been filed before the courts.

The vast majority of the cases involve people in heterosexual relationships. The law is understood and applied in a way that a person living with HIV not only has a duty to disclose, but also a duty to not place another person at risk of acquiring HIV. While some cases brought to the courts involve allegations of non-disclosure, a large number of cases are between couples of different HIV status, where both parties were aware of HIV in the relationship, and the HIV-negative partner consented to sex.

Charges are laid by the state and are regardless of the partner’s desire to prosecute and regardless of whether protective measures were taken by the person living with HIV, such as using a condom or being on treatment with a low or undetectable viral load.

Cases typically commence when health care providers hear that an HIV-negative person is in a sexual relationship with a person living with HIV, or when a pregnancy is involved. In order to be charged, all that is required is for the person living with HIV should know their HIV status and be registered with the state for HIV services.

As per community reports, people living with HIV are not getting the proper treatment, care and support that they need because of the legal barriers that Article 157 creates in the lives of people living with HIV.

In practice, the law in Belarus keeps people who learn anonymously of their HIV status from accessing treatment, education and counselling because people in Belarus can know about their HIV status and not be registered. Without being formally aware of the presence of HIV, then a person can avoid is not criminally liable. When people face the threat of criminalisation, ignorance of the diagnosis of HIV can be the most effective legal protection.

Crucially, people who are not registered as living with HIV with the state do not receive antiretroviral treatment and therefore endanger themselves and their sexual partners.

Building the case against criminalisation on the ground

People PLUS is a public association representing people living with HIV in Belarus.

It provides counselling to clients/patients – helping them to “correctly” answer questions and complain against forced examination during epidemiological investigations from the Ministry of Health, as well as the Ministry of Internal Affairs. This has been a positive experience with, over the past month, two refusals to initiate criminal cases.

In the Gomel region – where the highest number of cases under Article 157 of the Criminal Code of the Republic of Belarus are being reported – People PLUS have held meetings with the heads of the Epidemiological Department – the “sources” of initiating criminal cases in the region.

An agreement was reached, that without violating guidelines (according to a Ministerial Agreement the Epidemiological Department has to send cases of transmission to the Ministry of Internal Affairs for further investigation), the people under investigation will be immediately provided with People PLUS contacts in order to obtain advice on how to protect themselves during an investigation.

As a result, there was a 40% decrease in the number of criminal prosecutions in the country (19 for the 1st quarter of 2018) and 49% for the Gomel region (12 for the first quarter of 2018), compared to 2017.

People PLUS notes that in the criminal laws of other countries there is the possibility of a person living with HIV to be released from criminal liability if they disclose and receive consent from another person and/or took appropriate measures to greatly reduce the risk of transmission. The application of this rule, as prescribed in the law, will protect the rights and interests of people living with HIV in Belarus. Though ultimately, this is not enough to counteract the damage to the HIV response caused by criminalisation.

A proposal on introducing similar amendments to Article 157 put forward by People PLUS was discussed at a recent meeting of the Parliamentarian Commission on Health, Physical Culture, Family and Youth Policy. The Ministry of Health of the Republic of Belarus sent a letter to the Parliament in support of the initiative. The Commission decided to submit it for discussion in the autumn session of the Parliament.

People PLUS have arranged a meeting with the Chairman of the Gomel Regional Court, S.M. Shevtsov, in order to reduce the number of ongoing cases and to get support to further changes in legislation.

Parliamentary hearings are expected to take place in Autumn 2018.

Download the EECA Regional Criminalisation Report produced by EWNA on behalf of HIV JUSTICE WORLDWIDE here.

US: Panel Discussion with advocates working towards ending HIV criminalisation

Dismantling HIV Criminalization: A Panel Discussion

LA MAMA GALLERIA

Dismantling HIV Criminalization brought together activists and advocates working to end practices that punish and incarcerate people living with HIV, linking Visual AIDS’ summer exhibition Cell Count to the ongoing movement against HIV criminalization.

The panel featured a discussion between Kate Boulton of the Center for HIV Law and Policy, Kenyon Farrow of TheBody.com, Abdul-Aliy Muhammad of the Black and Brown Workers Collective, and Robert Suttle of the Sero Project.

Kate, Kenyon and Robert had just returned from the 2018 HIV is Not a Crime Conference in Indianapolis, where activists from around the country gathered to build a national movement against HIV criminalization.

Dismantling HIV Criminalization was dedicated to David Plunkett, a survivor of HIV criminalization who passed away in 2018. After five years in prison, David’s successful appeal in 2012 set a legal precedent in New York that the saliva of a person with HIV could not be characterized as a deadly weapon. David contributed an essay to the catalog for Cell Count, reflecting on his experience facing HIV criminalization. The catalog is available for purchase at the Visual AIDS store.

LINK TO VIDEO OF PANEL DISCUSSION

PANELIST BIOS

Kate Boulton is a Staff Attorney at the Center for HIV Law and Policy, where she focuses on HIV criminal law reform and the overrepresentation of people living with HIV in the criminal legal system. She has particular interest in the intersection between HIV criminalization and the criminalization of sex work, and recently spearheaded the creation of an advocacy toolkit addressing this issue. From 2007 to 2012, Kate served with the Centers for Disease Control and Prevention, where her work centered on migrant health and infectious disease. She earned her JD from Harvard Law School and her MPH from the University of Michigan.

Kenyon Farrow is the senior editor with TheBody.com and TheBodyPro.com. Kenyon has a long track record working in communities impacted by HIV as an activist, writer, and strategist. Prior to joining TheBody.com, he served as U.S. & Global Health Policy director for Treatment Action Group (TAG), where he led a research project to explore the role of community mobilization in the U.S. HIV response and helped develop strategies for southern jurisdiction’s ending-the-epidemic campaigns. Kenyon has also worked on campaigns large and small, local, national, and global on issues related to criminalization/mass imprisonment, homelessness, and LGBT rights. He is the co-editor of the book Letters From Young Activists: Today’s Rebels Speak Out. His work has also appeared on websites and in publications such as The Body.com, POZ, The Atlantic, TheGrio, Colorlines, ReWire News, The American Prospect, and AlterNet.

Abdul-Aliy Muhammad is a Black queer poz non-binary jawn* from Philadelphia, PA. They’ve worked in the field of HIV prevention for 6 1/2 years and currently work as an organizer with the Black and Brown Workers Collective and does anti-oppression trainings with the BlaQollective. Abdul-Aliy is releasing A Flower Left To Wilt, their first poetry book, on October 26, 2018.

Robert Suttle is the Assistant Director of the SERO Project, a network of people living with HIV and allies fighting for freedom from stigma and injustice. He oversees the community outreach and education and coordinates Sero’s HIV Criminalization Survivors Network.

Ireland: Following first HIV-related conviction for "intentionally or recklessly causing serious harm" in Ireland, Dr Juliana Adelman reflects on the fear of contagion

Fear of contagion clouds our thinking about the transmission of HIV

How can we treat people fairly while reducing risk to others of contracting the disease?

There is no legal obligation on a person with HIV to disclose their status, nor is there a law that provides a specific penalty for knowingly transmitting the disease. For the second time this year, this legal situation is being tested in the courts. The defendant is accused of “recklessly or intentionally causing serious harm” by transmitting HIV to two separate sexual partners.

This raises serious questions about our understanding both of HIV the disease and of personal responsibility with regard to health. Is the contraction of HIV, now a treatable long-term condition, “serious harm”? Who is at fault for contracting a disease? What does fault mean? These are very difficult questions and have vexed societies for as long as contagious diseases have circulated them. Sexually transmitted diseases bring another layer of complexity as they also involve attitudes towards sexual activity.

An interesting thing happens in my history of medicine class when we talk about sexually transmitted diseases. The students veer between contradictory positions. On the one hand, they have no sympathy for the system of Magdalene laundries and lock hospitals that incarcerated women with suspected syphilis, often against their will.

Contrasting sympathies

The students say such a system was sexist and motivated by a tendency to blame victims of disease. When we talk about HIV, however, they advocate a different position. This year, one student suggested to the class that people who are HIV-positive should be placed on something akin to a sex offender register. Everyone should know about their status and have the opportunity to avoid them. A kind of walking, permanent, lock hospital.

When I try to point out that their sympathy with syphilitic women in the past seems in stark contrast to their fear of people with HIV in the present, they are confused. How did the person get HIV they ask? Because, they say, there are ways to get the disease that are your fault and ways that are not.

In the 17th century, when syphilis was still a new and poorly understood disease, some doctors blamed women for creating the disease in their own wombs. Kevin Sienna has unearthed a wide range of sources pointing the finger of blame at women, especially women who were too overtly sexual. The “pocky steams” of the prostitute or the unfaithful wife passed the disease to unsuspecting men; no one asked how the women got it in the first place.

Patients isolated

In the 19th century, the Contagious Diseases Acts (1864 to 1869) attempted to stamp out syphilis by arresting and inspecting women suspected of prostitution. Women need not be caught in the act of soliciting sex, but only rumoured or accused. If the medical examination found symptoms of disease, the woman was confined to a lock hospital for treatment. Protests against the Act for how it treated women were immediate and loud and eventually it was repealed.

Yet societies continued to treat sexually transmitted diseases differently than other contagious diseases. Robert Koch identified the bacteria that causes tuberculosis in 1882. Transmission of the disease could be prevented by specific behaviours, including the isolation of contagious patients. Yet some public health advocates resisted efforts to make the disease “notifiable” to authorities for fear that social stigma would prevent victims from seeking treatment. While TB did carry a stigma and patients often spent months and years isolated in sanitoria, its victims elicited more sympathy than fear.

A fear of moral contagion clouds our thinking about the transmission of HIV today. Because the disease is most commonly passed through intravenous drug use and sexual intercourse, we consider it shameful and its victims at least partly responsible for their plight. But we do not distribute that blame equally: heroin addicts, African immigrants, the sexually promiscuous, prostitutes, and gay men have often carried a disproportionate amount of blame. No wonder that most people with HIV would rather keep their diagnosis a secret.

Someone diagnosed with HIV at age 20 is, with treatment, expected to live to 73. That means that there are many people living in our communities, partaking of all aspects of human life, who are HIV positive. How can we treat them fairly while also reducing the risk that others will contract the disease?

Dr Juliana Adelman lectures in history at Dublin City University

Published in the Irish Times on Thu, Jul 12, 2018

Final programme for Beyond Blame 2018 Now Online: Last few places available so register now!

Beyond Blame 2018: Challenging HIV Criminalisation is a one-day meeting for activists, advocates, lawyers, scientists, healthcare professionals, researchers, policymakers, and anyone else interested in working to end HIV criminalisation.

The programme includes interactive panels, keynote presentations and parallel workshops focusing on critical issues in the fight against HIV criminalisation around the world.

The final programme can be downloaded here.

With only a 200 maximum capacity, space is now very limited, so if you plan to attend you should register as soon as possible at this link: https://www.eventbrite.co.uk/e/beyond-blame-2018-registration-registration-45640621327

But don’t worry if you can’t be in Amsterdam: we will be live streaming all of the plenary sessions onto the HIV JUSTICE WORLDWIDE YouTube Channel. (No need to register to watch online, though.) Don’t forget to subscribe ahead of time so you are alerted when we add new videos.

And you can be part of the conversation on Twitter using the hashtag #BeyondBlame2018

The meeting is being convened by the Steering Committee of HIV JUSTICE WORLDWIDE – comprising AIDS Action Europe, AIDS-Free World, 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), Southern Africa Litigation Centre (SALC), Sero and Positive Women’s Network – USA (PWN-USA).

Beyond Blame 2018 is supported by a grant from the Robert Carr Fund for Civil Society Networks.

You care about Criminalisation (You just don't know it yet): A site-specific project by Avram Finkelstein for Visual AIDS

YOU CARE ABOUT HIV CRIMINALIZATION (YOU JUST DON’T KNOW IT YET)* is a site-specific project by artist/activist and SILENCE=DEATH co-creator Avram Finkelstein for Visual AIDS, created for the 2018 New York City Pride March.

This past Sunday, Visual AIDS was involved in the NYC Pride March for the first time in decades, distributing over 7,500 copies of the newly commissioned artistic broadsheet project about the stakes of HIV criminalization to thousands of people along the march route.

The criminal justice system considers HIV a deadly weapon and in many states exposing someone to HIV is a crime, regardless of condom use, viral load, or actual risk of transmission.

For people living with HIV, a contentious relationship, a personal misunderstanding or even a minor infraction of the law can lead to prison sentences of over thirty years, sensationalized media coverage, and registration as a sex offender.**

Know the facts. AIDS is not over. HIV criminalization can be.

* Courtesy of HIV Is Not a Crime Flash Collective

** Courtesy of Sero Project

Visual AIDS has been deeply inspired by the significant strides made by activists working against HIV criminalization over the past several years and hope that this project will raise awareness and inspire people to take action.

Join our efforts as we continue to advocate against HIV criminalization by distributing YOU CARE ABOUT HIV CRIMINALIZATION (YOU JUST DON’T KNOW IT YET): View, download or print the broadsheet for distribution here.

Visual AIDS would like to sincerely thank the dozens of volunteers who joined us at the NYC Pride March this year for their energy and efforts to support the project and advocate against HIV criminalization. We also thank Avram Finkelstein for his visionary collaboration on this project.

US: North Carolina's HIV criminalisation reform protects people who are undetectable but leaves others vulnerable

In North Carolina, an HIV Criminalization Reform Bill Passed, but People Who Aren’t ‘Undetectable’ Remain at Risk

Until recently, North Carolina was one of two-dozen states that directly criminalize HIV exposure, but in a historic move this year, the state updated its HIV control measures to conform with the modern understanding of transmission risk.

North Carolina’s unique journey to HIV criminalization reform might serve as a roadmap for other advocates hoping to modernize their own state’s laws. But it hasn’t been without controversy, with some advocates taking issue with North Carolina’s new carve-out for HIV-positive people who have achieved viral suppression.

Thanks to antiretroviral treatment, people who take a pill every day are no longer capable of transmitting the virus to others, a scientific framework called “undetectable equals untransmittable” or “U=U.” North Carolina’s new rule protects that population completely, but it leaves others vulnerable to legal ramifications.

That’s a problem, some argue, because it might deepen racial disparities that already exist in prison sentences and in viral suppression. According to the Prison Policy Initiative, black North Carolinians make up only 22% of the state’s population yet account for 55% of all people in state prisons and local jails; whites comprise 65% of the state’s population but only 36% of those in state prisons or jails. When it comes to viral suppression, in North Carolina, 62% of all people with HIV are virally suppressed. But 66% of whites living with HIV in the state are undetectable, compared with 61% of blacks and 51% of Latinx people.

“These concerns are valid and need to be addressed,” says Christina Adeleke, communications and development coordinator with North Carolina AIDS Action Network (NCAAN). But addressing these “bigger system issues … is a conversation that’s way bigger than HIV criminalization.”

Adeleke and her colleagues at NCAAN were instrumental in bringing about North Carolina’s reform and presented their process for advocating for reform at the 2018 HIV Is Not a Crime Training Academy in Indianapolis. If it were up to NCAAN’s executive director Lee Storrow, he would repeal HIV criminalization laws outright. But Storrow and Adeleke both emphasize that they are working in a Southern state, where it’s tough to move the needle on HIV criminalization reform.

“We wanted to advance it as far forward as we had the capacity to, without going so far that we wouldn’t achieve anything,” explains Storrow.

“We had to be very mindful to be in lockstep with the state,” Adeleke adds. “Where we landed was as far as we could go at this point.”

According to Storrow, North Carolina now has the most progressive HIV criminal law in the South. He argues that decriminalizing behaviors for people who have achieved viral suppression is an important first step. Additionally, North Carolina’s reform contained other important changes, eliminating stigmatizing words, such as “infected” and “retarded,” and conforming with new federal rules around HIV-positive organ donation.

Now, NCAAN is hoping that North Carolina’s modernized rules will encourage people who are living in the shadows to seek treatment, knowing that they’ll be protected from prosecution if they’re able to take their medications every day.

NCAAN’S Journey

Dozens of HIV criminalization laws were passed in the 1990s and 2000s when fear of the epidemic was at an all-time high. But, today, some lawmakers are rethinking these decades-old rules in the wake of mounting evidence that they’re based on outdated science. California recently modernized its law to reduce HIV transmission from a felony to a misdemeanor — a reform advocates consider a best-case scenario. Meanwhile, other states have moved in a different direction, broadening their HIV criminalization laws to include hepatitis C and other sexually transmitted infections.

But, unlike other states, North Carolina’s HIV criminalization rules are not baked into the legal code. Instead, the rules exist as part of the state’s public health control measures, under the purview of the Commission for Public Health.

In 2017, those control measures were up for review, and NCAAN saw an opportunity to finally modernize the state’s criminalization rules. Initially, state officials only wanted to reform the control measures to include the federal HIV Organ Policy Equity Act (HOPE Act), which legalizes organ donation between HIV-positive people, said Storrow.

However, NCAAN advocated for broader reforms, arguing that the state should decriminalize condomless sex between HIV-positive couples and mixed-status couples who use pre-exposure prophylaxis (PrEP).

Moreover, NCAAN fought to eliminate non-disclosure prosecutions for HIV-positive people who are virally suppressed, based on the contemporary understanding that effective treatment prevents people with HIV from passing the virus to others.

It took months of meetings and many strained conversations to convince some state officials that HIV criminalization rules should be modernized. In part, that’s because many people still believe that HIV is a highly contagious death sentence.

People assume that if you are living with HIV, you are in a constant state of being able to transmit HIV to other people,” says Adeleke. “In reality, if you are on medication and in treatment and virally suppressed, it is physically not possible to do that. You can live a normal life.”

Eventually, a compromise took shape, and the new, modernized rule took effect in January 2018. Storrow says the changes made are meaningful to many North Carolinians, especially couples who are on treatment and no longer need to fear prosecution. But he also called the changes “incomplete,” asserting that there’s a long way to go in the effort to completely decriminalize HIV in his state.

Adeleke hopes North Carolina’s journey can be a model for other Southern states that must balance the desire for radical reform against the backdrop of conservative-leaning leadership.

Adeleke recommends that other advocates working in the South familiarize themselves with specific legislation and public health laws in their own states.

“See who specifically is in charge of making certain decisions; you may find you have allies waiting in certain parts of government who can help you move this along,” she adds.

In North Carolina, the majority of people on the HIV reform task force were people living with HIV, Adeleke says.

“The process was inspiring because it showed how a community can take ownership of a particular topic that’s really affected them,” she says. “To be able to achieve the result we did was exciting.

Sony Salzman is a freelance journalist reporting on health care and medicine, who has won awards in both narrative writing and radio journalism. Follow Salzman on Twitter: @sonysalz.

Published in the Body on June 25, 2018