Commentary: An International Pandemic Treaty Should Centre on Human Rights

Published on 10 May 2021 in: The BMJ

 

The proposed International Pandemic Treaty could be undermined by political posturing and national protectionism—or it could be an opportunity to chart a different global future based on human rights. Those in charge of drafting the treaty must begin with a clear look at the grave abuses that have characterized the COVID-19 pandemic: authoritarian power grabs; continuing monopolies in diagnostics, therapeutics, and vaccines; failure to resource health systems; staggering setbacks for women; and an upsurge in violence, including covid-related hate crimes. Poorer and marginalized communities have borne the heaviest burden of policing; unemployment; and lack of food, health services, and security.

States have all-too-easily sidelined the international human rights framework under cover of emergency responses. This cannot continue. Any treaty should address these key issues:

The right to healthMost of the world lacks COVID-19 diagnostics, medicines, and vaccines. A new treaty should uphold the right to physical and mental health, and acknowledge the right of everyone to the benefits of scientific progress and its applications, including through intellectual property waivers. 

An end to weaponizing pandemics—Any new treaty should protect individuals from threat of criminal sanctions linked to infection and reaffirm the Siracusa Principles, which set out clear limits on restrictions of rights during an emergency.

Workers’ rights are human rights—Workers who gave the most in 2020 were protected the least. States should ensure the physical security of health care workers, community health workers and other essential workers, and respect their right to form and join trade unions. Informal sector workers should have the right to continued employment or social security.

Combat gender inequalities—The pandemic has placed a disproportionate burden on women as healthcare professionals, educators, and caregivers; as well as on transgender people and sex workers. States should prioritize social protection, including childcare and sexual and reproductive health services, as well as prevention and response to gender-based violence.

Uphold rights in the digital age—Digital health has boomed during covid-19. A treaty should address the need for universal access to the internet and digital technology, while upholding rights to digital privacy and non-discrimination, and promoting strict regulation of use of health data.

Transparency and trust—The COVID-19 response has been weakened by corruption. A pandemic treaty should ensure states publish detailed information about budgets, expenditures, and procurement on a live portal; as well as the evidence basis for restrictive measures such as lockdowns; and for diagnostics, therapeutics and vaccine approvals. The International Health Regulations require information-sharing about outbreaks: this has been impeded by states silencing whistleblowers. Any treaty must reaffirm the rights to freedom of expression and opinion.

Accountability and community—Any new treaty should not undermine existing human rights. Human rights obligations related to pandemics should be independently monitored by a multi-stakeholder oversight body that meaningfully incorporates civil society. Community expertise and leadership are vital to effective pandemic response: any treaty should recognize, fund, and enable safe environments for community and civil society at all levels. 

The COVID-19 pandemic starkly widened inequalities. We must seize this opportunity to reassert the principle of human equality, which must never be compromised; draw on lessons learned from the past year, and chart a better future

Co-authors: Sara (Meg) Davis is senior researcher, Global Health Centre at the Graduate Institute of International and Development Studies, Geneva, Switzerland. Philip Alston is professor, New York University School of Law and former UN Special Rapporteur on Extreme Poverty and Human Rights, New York, USA. Joseph J. Amon is Clinical Professor and Director of the Office of Global Health at Dornsife School of Public Health, Drexel University, Philadelphia, USA. Edwin J. Bernard is executive director, HIV Justice Network in Amsterdam, the Netherlands. Sarah M. Brooks is programme director, International Service for Human Rights in Geneva, Switzerland. Gian Luca Burci is professor in the International Law Department of the Graduate Institute of International and Development Studies, Geneva, Switzerland. Naomi Burke-Shyne is executive director, Harm Reduction International, in London, UK. Georgina Caswell is programme manager, Global Network of People Living with HIV in Cape Town, South Africa. Mikhail Golichenko is senior policy analyst, HIV Legal Network in Toronto, Ontario, Canada. Anand Grover is director, Lawyers Collective and the former UN Special Rapporteur on the Right to Physical and Mental Health in Mumbai, India. Sophie Harman is professor at the School of Politics and International Relations, Queen Mary University of London, in London, UK. Lu Jun is director of Beijing Yirenping Center in Beijing, China. Rajat Khosla is senior director of research, advocacy and policy at Amnesty International, London, UK. Kyle Knight is senior researcher, Human Rights Watch, Durham, NC, USA. Allan Maleche is executive director, Kenya Ethical and Legal Issues Network on HIV and AIDS (KELIN), Nairobi, Kenya. Tlaleng Mofokeng is UN Special Rapporteur on the Right to Physical and Mental Health. Moses Mulumba is executive director, Center for Health, Human Rights and Development, in Kampala, Uganda. Sandeep Nanwani is chief medical officer, Yayasan Kebaya in Yogyakarta, Indonesia. Mike Podmore is director, STOPAIDS in London, UK. Dainius Puras is a professor at Vilnius University and former UN Special Rapporteur on the Right to Physical and Mental Health in Vilnius, Lithuania. Nina Sun is deputy director, Global Health and assistant clinical professor at the Dornsife School of Public Health, Drexel University, Philadelphia, USA. Nerima Were is deputy director, Kenya Ethical and Legal Issues Network on HIV and AIDS (KELIN), Nairobi, Kenya. 

HJN’s Annual Report 2020
Looking back at an “extraordinary twelve months”

Looking back at an “extraordinary twelve months”

Today, with the publication of our Annual Report 2020, we look back at some of the key highlights of an extraordinary twelve months and look to the future.

The report is published by HJN’s fiscal host, the HIV Justice Foundation, an independent non-profit legal entity registered in the Netherlands as Stichting HIV Justice to specifically serve as the fiscal organisation for the HIV Justice Network and other related activities.

Although 2020 was the year that COVID-19 impacted us all, HIV criminalisation was still a major issue of concern. HJN began highlighting punitive responses to this latest pandemic in our HIV Justice Weekly newsletter in March 2020, as well documenting at least 90 cases of unjust HIV criminalisation in 25 countries through our global monitoring work.

Kevin Moody, who became Chair of the Foundation’s Supervisory Board earlier this year, after joining the Board last September, said: “HJN realised major achievements last year, as outlined in our Annual Report 2020. Aside from fulfilling an essential leadership role in combatting HIV criminalisation and convening diverse partners globally, Executive Director Edwin J Bernard led the team in evaluating its strategy with an eye to remain fit for purpose in a rapidly changing environment moving forward. That this was all achieved in the context of COVID-19 speaks highly of the dedication of the team and partners to reduce unjust criminalisation of people living with HIV everywhere.”

HJN milestones

Despite the many challenges faced by our partners working in-country, and regionally, HJN continued its mission to cultivate a global community of transparency and collaboration between individuals and organisations working to address HIV criminalisation. Key milestones for 2020 included:

Throughout the year, as the lead grantee of the HIV Justice Global Consortium, funded through the Robert Carr Fund, we oversaw the distribution of small grant pots to via our partners working in Eastern Europe and Central Asia, Francophone Africa, Anglophone, and Lusophone Africa, and Latin America; and supported research in Angola and Mexico and legal interventions in Canada, Lesotho, and Zimbabwe.

Key Strengths

In the second half of 2020, we undertook a strategic review which found that HJN’s reputation amongst its stakeholders is strong, based on the expertise within the organisation, work it produces, and its leadership.

HJN has grown over the past year, taking steps to expand the team to complement our existing capacity around campaigns and communications, and finance and administration. We also expanded our governance, adding new Supervisory Board members, and convened our Global Advisory Panel (GAP), an international expert reference group of activists, lawyers, and academics – more than half of whom are openly living with HIV – from all regions of the world who are working on ending HIV and intersectional criminalisation.

Looking to the Future

Edwin J Bernard, HJN’s Executive Director, said: “Although the COVID-19 pandemic is likely to have a long-term, transformative impact on our work, our Strategic Review suggested a number of ways to leverage our expertise and broaden our reach beyond our current core focus. And so, although it has been a part of our analysis on HIV criminalisation for many years, we will be purposefully emphasising an intersectional lens in our future work.”

He added, “This means understanding and more frequently recognising where the issue of HIV criminalisation sits in relation to systemic discrimination that disadvantages people living with HIV on the basis of different, intersecting aspects of their identities, beyond solely their HIV-positive status. We anticipate this will open doors for collaborations and connections at project or funding levels with new partners across this spectrum. We look forward to sharing our new Strategic Plan, which will inform our programming and operations for 2022-2026, very shortly.”

HJN’s Annual Report 2020

Russia: Deporting migrants with HIV from Russia is not only inhumane but also economically unprofitable

State asked to stop expulsion of migrants with HIV

Automated translation via Deepl.com – For original article in Russian, please scroll down.

Representatives of the Regional Expert Group on the Health of Migrants in the EECA region called the current practice of deporting migrants with HIV in Russia not only inhumane but also economically unprofitable. Treatment of neglected cases, when a person hides their status and lives illegally, out of fear of deportation, costs the state more than 200 thousand rubles, the experts estimate. At the same time, if the law allowed them to live and be treated – at their own expense or at the expense of the migrants’ home country, a course of annual therapy would cost about 90 thousand rubles. In 2016, the ECHR already demanded that Russia completely refrain from discriminating against HIV-positive foreigners, but since then, the legislation has not changed.

The Regional Expert Group on the Health of Migrants in the EECA Region (REG) assessed the potential economic benefits of not discriminating against foreigners with HIV-positive status in Russia. The authors of the study concluded that allowing migrants to live and be legally treated in Russia “is not only more beneficial from a humanitarian and epidemiological point of view, but also from an economic one.

A 1995 law prohibits foreign nationals with HIV from entering, staying and residing in Russia. If foreigners who have been tested not anonymously are found to be HIV-positive, Rospotrebnadzor makes a decision on their undesirability to stay in the country. Experts point out that for fear of deportation, many migrant workers hide their disease. They do not take antiretroviral therapy and, in their serious condition, end up in hospitals where they cannot, by law, be denied emergency medical care. The authors calculate that if a patient were to receive the necessary therapy, the cost of treatment would be 83,084 roubles a year, or about 6,924 roubles a month. They note that these costs “with certain legislative amendments” could be paid by the country of origin.

However, if a foreigner with HIV infection does not receive treatment and, as a result, develops complications, inpatient treatment for 21 days and an antiretroviral therapy course will cost 228,572.6 roubles. This treatment option is covered by the budget of the Russian Federation.

The authors draw attention to the high prevalence of HIV infection in Russia, 54.8 people per 100,000 population. In countries from which migrant workers come most frequently, the rate is much lower: 14.2 in Tajikistan, 13.2 in Kyrgyzstan and 7.2 in Azerbaijan. They also cite a recent study by the Russian Ministry of Finance on the impact of HIV on economic and demographic development in Russia. According to the study, the annual loss of society from the uncontrolled spread of HIV infection is about 200 billion roubles. The researchers note that “one of the characteristic features of the current stage of HIV infection in Russia is the expansion of the hidden epidemic among labour migrants who are forced to keep their HIV status secret”.

According to the Central Research Institute of Epidemiology of Rospotrebnadzor, 37,389 HIV-positive foreigners have been identified in Russia since 1985, when the first case of infection was detected, until the end of 2019 (these are those who have been officially tested). In the same time period, the number of HIV-positive Russians has reached 1,420,975. Vadim Pokrovsky, head of the Federal AIDS Center, told Kommersant that given the ratio, the influence of foreigners on the epidemiological situation “is not that great. He said that in the late 1980s, when the infection was indeed found mainly in people arriving from abroad, there was “some sense” in screening them and sending them home. Within a few years, the number of Russians who were infected outnumbered the foreigners, he continued, but the deportations were supported by “hooray patriots,” who believed they were thus “saving Russia from HIV infection. Now, according to Mr. Pokrovsky, the main problem is economic, as treatment is lifelong, expensive and it is unclear at whose expense migrants will receive it.

“In order to implement the proposals in the study, the legislation would need to be amended accordingly. There is no doubt that this will meet with a wave of controversy,” says Mr Pokrovsky.

In 2016, the European Court of Human Rights (ECHR) found Russia guilty of violating the rights of HIV-positive foreigners who were banned from entering and staying in Russia if they had the disease. The year before, following a ruling by the Constitutional Court, it was ruled that if a migrant’s spouse, children or parents are Russian citizens, he or she cannot be expelled. However, the ECHR insisted on a complete rejection of discrimination against HIV-positive persons. The ruling stated that Russia was the only CoE country and one of 16 countries in the world to deport foreigners solely on the basis of their HIV status.

Coordinator of charitable programmes of the Civic Assistance Committee Varvara Tretiak (listed by the Ministry of Justice as a foreign agent) argues that finding a migrant with HIV is almost impossible: people “just go into the shadows”, live and work illegally. The Committee more often has to interact with refugees with HIV-positive status. Ms. Tretiak tells the story of an Uzbek national who sought asylum in Russia after fleeing the country for fear of being prosecuted for homosexuality. He tried to obtain a work permit and underwent a medical examination to do so. However, after being diagnosed with HIV, the “road in the legal field”, according to Varvara Tretiak, was closed to him. As a result, he moved to a third country.

One of the authors of the report, researcher Daniil Kashnitsky of the HSE Institute for Social Policy, told Kommersant that the results of the study will be sent to Rospotrebnadzor, the Ministry of Health and the Interior Ministry. Rospotrebnadzor told Kommersant that legislation on migration policy issues has been “optimized” in recent years. The Ministry also stated that they had not made “any decisions regarding undesirability of stay (residence) of foreign nationals or stateless persons from March 15 until December 15, 2020. The Ministry of Health told Kommersant that the agency “raises big questions about both the methodology and conclusions of the study.


Государство просят отказаться от практики выдворения мигрантов с ВИЧ

Представители Региональной экспертной группы по здоровью мигрантов в регионе ВЕЦА назвали действующую в РФ практику депортации мигрантов с ВИЧ не только негуманной, но экономически невыгодной. Лечение запущенных случаев, когда человек из страха выдворения скрывает статус и живет нелегально, обходится государству более чем в 200 тыс. руб., подсчитали эксперты. При этом если бы закон позволял им жить и лечиться — за свой счет или за счет родной страны мигрантов, курс годовой терапии стоил бы около 90 тыс. руб. В 2016 году ЕСПЧ уже требовал от России полного отказа от дискриминации ВИЧ-инфицированных иностранцев, однако с тех пор законодательство так и не изменилось.

Региональная экспертная группа по здоровью мигрантов в регионе ВЕЦА (РЭГ) оценила потенциальную экономическую пользу от отказа от дискриминации иностранцев с ВИЧ-положительным статусом в России. Авторы исследования пришли к выводу, что позволить мигрантам жить и легально лечиться на территории России «выгоднее не только с гуманитарной и эпидемиологической, но и с экономической точки зрения».

Закон от 1995 года запрещает иностранным гражданам с ВИЧ въезд в Россию, их временное пребывание и проживание. Если у иностранцев, прошедших тестирование не на условиях анонимности, выявлена ВИЧ-инфекция, Роспотребнадзор выносит решение о нежелательности их пребывания на территории страны. Эксперты обращают внимание, что из-за страха депортации многие трудовые мигранты скрывают заболевание. Они не принимают антиретровирусную терапию и в тяжелом состоянии попадают в больницы, где им по закону не могут отказать в экстренной медицинской помощи. Авторы подсчитали, что если пациент будет получать необходимую терапию, стоимость лечения составит 83 084 руб. в год, или примерно 6924 руб. в месяц. Они отмечают, что эти затраты «при внесении определенных поправок в законодательство» могут быть оплачены за счет страны исхода.

При этом если иностранец с ВИЧ-инфекцией не получает терапию, вследствие чего у него развиваются осложнения, стационарное лечение длительностью 21 день и курс антиретровирусной терапии обойдутся в 228 572,6 руб. Этот вариант лечения обеспечивается за счет бюджета РФ.

Авторы обращают внимание на высокую распространенность ВИЧ-инфекции в России — 54,8 человека на 100 тыс. населения. В странах, из которых трудовые мигранты приезжают чаще всего, показатель гораздо ниже: 14,2 — в Таджикистане, 13,2 — в Киргизии, 7,2 — в Азербайджане. Кроме того, они ссылаются на недавнее исследование Минфина России о влиянии ВИЧ на экономическое и демографическое развитие РФ. Согласно его данным, ежегодные потери общества от неконтролируемого распространения ВИЧ-инфекции составляют примерно 200 млрд руб. Исследователи отмечают, что «одной из характерных черт современного этапа распространения ВИЧ-инфекции в РФ является расширение масштабов скрытой эпидемии среди трудовых мигрантов, вынужденных держать свой ВИЧ-статус в тайне».

По данным ЦНИИ эпидемиологии Роспотребнадзора, в России с 1985 года, когда был обнаружен первый случай инфекции, до конца 2019 года было выявлено 37 389 ВИЧ-положительных иностранцев (речь о тех, кто прошел обследование официально). За это же время число ВИЧ-инфицированных россиян достигло 1 420 975 человек. Глава федерального центра по борьбе со СПИДом Вадим Покровский сказал “Ъ”, что, учитывая соотношение, влияние иностранцев на эпидемиологическую ситуацию «не такое уж большое». По его словам, в конце 1980-х, когда инфекция действительно обнаруживалась в основном у приезжающих из-за рубежа, в их обследовании и высылке на родину «был какой-то смысл». Уже через несколько лет число россиян—носителей инфекции значительно превышало число иностранцев, продолжает он, однако практика депортации поддерживалась «ура-патриотами», которые считали, что таким образом «спасают Россию от ВИЧ-инфекции». Сейчас, по мнению господина Покровского, основная проблема — экономическая, так как лечение пожизненное, дорогостоящее и непонятно, за чей счет мигранты будут его получать.

“Для того чтобы реализовать те предложения, о которых идет речь в исследовании, нужно внести соответствующие изменения в законодательство. Несомненно, это встретит волну споров»,— говорит господин Покровский.

Отметим, в 2016 году Европейский суд по правам человека (ЕСПЧ) признал Россию виновной в нарушении прав ВИЧ-положительных иностранцев, которым при наличии этого заболевания был запрещен въезд и пребывание в РФ. За год до этого, после соответствующего решения Конституционного суда, вышло постановление, что если у мигранта супруг, дети или родители — граждане РФ, его нельзя выдворять. Однако ЕСПЧ настаивал на полном отказе от дискриминации ВИЧ-инфицированных лиц. В решении говорилось, что Россия является единственной страной СЕ и одной из 16 стран в мире, которая депортирует иностранцев только на основании их ВИЧ-статуса.

Координатор благотворительных программ комитета «Гражданское содействие» (внесен Минюстом в список иноагентов) Варвара Третяк утверждает, что найти мигранта с ВИЧ практически невозможно: люди «просто уходят в тень», живут и работают нелегально. Комитету чаще приходится взаимодействовать с беженцами с ВИЧ-положительным статусом. Госпожа Третяк рассказывает историю гражданина Узбекистана, который, покинув страну из страха уголовного преследования за гомосексуализм, просил убежища в РФ. Он попытался получить патент на работу и для этого прошел медобследование. Однако после выявления ВИЧ «дорога в легальном поле», по словам Варвары Третяк, для него была закрыта. В результате он переехал в третью страну.

Один из авторов доклада, научный сотрудник Института социальной политики ВШЭ Даниил Кашницкий сообщил “Ъ”, что результаты исследования будут направлены в Роспотребнадзор, Минздрав и МВД. В Роспотребнадзоре “Ъ” заявили, что в последние годы законодательство по вопросам миграционной политики «оптимизируется». В ведомстве также заявили, что не принимали «решения о нежелательности пребывания (проживания) в отношении иностранных граждан или лиц без гражданства с 15 марта до 15 декабря 2020 года». В Минздраве “Ъ” сообщили, что в ведомстве «вызывают большие вопросы как методология, так и выводы исследования».

US: Decriminalising HIV would protect disadvantaged communities from HIV infection and further marginalisation

HIV criminalization perpetuates intersecting forms of discrimination

Imagine you are a transgender Black woman in Florida. You are already facing housing and workplace discrimination, gender-based violence and social and institutional racism. One of your few options for financial support is sex work, but you do not plan to have intercourse with clients. Unfortunately, a sting operation leads you to be taken to the police station. You wonder why the cisgender white woman you work alongside was not caught. Upon arrival at the station, you are forced to get tested for HIV. You test positive. You are now a convicted felon and may have to register as a sex offender.

This fictional narrative illustrates the severity of the criminalization of HIV in the United States and is an accurate representation of the discrimination felt by LGBT, non-white individuals, sex workers and those who experience the intersectional disenfranchisement of multiple identities. According to Avert Global Information and Education on HIV and AIDS, transgender people are 49 times more likely to be affected by HIV than the general world population. Over half a million Americans have died since the beginning of the AIDS epidemic in the 1980s. A disproportionate number of these people were non-white, LGBT or both. By looking at the Movement Advancement Project’s maps of states with HIV laws, 34 states still discriminated against those with HIV in 2020, with transgender women being the most globally discriminated against. HIV should be nationally decriminalized since the penalties only further marginalize disadvantaged communities.

A 2017 article by the National LGBT Task Force and the Center for HIV Law & Policy states that transgender sex workers are “nearly six times as likely to be living with HIV than the general trans population, and 25 times as likely relative to the general population.” Transgender women, especially those who are non-white, are profiled significantly more for sex work.The data illustrates how transgender women are more at risk of being presumed HIV positive, which perpetuates transphobic, homophobic, sexist and racist discriminatory practices.

Some may argue that decriminalizing HIV will lead to an increase in cases. In fact, data has been shown that HIV criminalization laws disincentivize HIV testing. This is because in some states, it is mandatory that the arrestee be tested once entering the police station. A 2015 study by Yang, et al. found that the decriminalization of sex work could actually reduce 33-45% of new HIV infections, illustrating the counterproductive attributes of HIV criminalization. Data has also shown that HIV penalties are significantly based on one’s race and sex, which caused the state of California to change HIV charges of sex workers from felonies to misdemeanors. While this change in California is an improvement, officials can still discriminate based on race, sexual orientation and gender identity. Overall, this illustrates that the criminalization of HIV is maintained in order to keep a discriminatory social hierarchy that hurts transgender women’s social mobility, especially Black transgender women.

The differences of prosecution among states is important because data shows that transgender women can be prosecuted for even non-transmissible actions. Data by the Movement Advancement Project shows 17% of the American LGBT population lives in a state where there is an HIV criminalization law, HIV-specific sentencing and/or laws that may require individuals to register as sex offendes; 35% lives “in a state with a HIV criminalization law;” and 21% in a state without a HIV criminalization law but where a positive status does affect sentencing. Liberal states, such as Massachusetts, criminalize exposure to, as well as transmission of, HIV. Sex workers can be charged with a felony for spitting or biting — even though neither action spreads HIV. This further shows that states have multiple avenues to discriminate against marginalized groups through the criminalization of HIV. The evidence illustrates the need to decriminalize HIV on a national level to protect marginalized communities, especially  transgender women, transgender women of color and Black transgender women. By decriminalizing HIV, Americans are further protected from infection and forms of discrimination.

Editorial: “Leave no-one behind” when working to end HIV criminalisation

An editorial published to coincide with Zero Discrimination Day (March 1) by leaders in the HIV Justice movement celebrates “the courage and commitment of the growing global community of advocates, human rights defenders and others around the world who are challenging laws, policies and practices that inappropriately and unjustly criminalize people living with HIV”, but warns that this work must include and benefit those populations who are the most marginalised, and who remain most vulnerable to prosecution, despite advances in HIV science that are being used to challenge and modernise these laws.

Writing in the Journal of the International AIDS Society, the authors – who include HJN’s Executive Director, Edwin J Bernard; HJN’s Supervisory Board member, Michaela Clayton; and HJN’s Global Advisory Panel member, Edwin Cameron, along with Chris Beyrer, Desmond M. Tutu Professor of Public Health and Human Rights at the Johns Hopkins Bloomberg School of Public Health and GNP+’s Alexandra Volgina – note that despite many advances in the science of HIV there remains one area that is still an “all too common a threat to the lives and wellbeing of people living with HIV, as well as to the goal of ending the epidemic” – HIV criminalisation.

HIV criminalisation describes the unjust application of criminal and similar laws to people living with HIV ostensibly based on their HIV status, either via HIV‐specific criminal statutes or general criminal or other laws.

Citing data collated from HJN’s global case monitoring which suggests that HIV criminalisation intersects with “discrimination or criminalization on the basis of ethnicity, sex, gender identity, immigration status, sex work, sexuality and/or substance use,” they note that HIV criminalisation can be seen as a “surrogate marker for state‐sponsored stigma and discrimination against marginalized groups of people at higher risk of HIV.”

The editorial also addresses public health and healthcare workers who are often viewed as an extension of the criminal justice system by marginalised populations. “We are also seeing a frightening trend of prosecutions being initiated by those working in healthcare or public health without specific complaints. In some cases, police were notified of a person’s HIV diagnosis by health authorities, which then became a prompt to investigate the person’s relationship with their partner.”

Relatively few countries have repealed or modernised their laws, although efforts are currently underway across the globe, assisted by the 2018 publication of the Expert consensus statement on the science of HIV in the context of criminal law authored by 20 of the world’s leading HIV scientists, including Professor Beyrer.

The editorial celebrates and encourages the growing number of global advocates, human rights defenders and others around the world who are challenging HIV criminalisation but notes that everyone involved in the HIV response needs to play their part. “Ending HIV criminalization is the responsibility of us all,” they argue.

“It is important that we all understand how to ensure justice for all people living with HIV, not just those who have access to treatment and are fortunate enough to be undetectable,” they conclude, “so that we can finally end these outrageously unjust laws, policies and practices against people living with HIV in all of their diversity.”

Year in review: Celebrating successes, highlighting the many challenges ahead

This past year has shown us what happens when one pandemic –  HIV – is overshadowed by another pandemic, COVID-19.  Despite the many lessons learned from our collective advocacy against HIV criminalisation that we and our HIV JUSTICE WORLDWIDE partners highlighted in March, these lessons were mostly ignored by policymakers around the world.

The result was a series of knee-jerk legal, policy and police responses leading to the overzealous policing of people living with HIV and other key and inadequately served populations already subject to existing inequalities in law and policy, which we have been highlighting in our HIV Justice Weekly newsletter since March.

This latest pandemic overshadowed, and in some cases undermined, the work we and others have been doing to ensure a fair, just, rational and evidence-based response towards people living with HIV by the criminal justice system.

This past year we documented at least 90 cases of unjust HIV criminalisation in 25 countries, with Russia and the United States being the worse offenders.  Women living with HIV were accused in 25% of those cases. Three of these cases were for breastfeeding.  In the United States, more than 50% of those accused in HIV criminalisation cases were people of colour.  

2020 also saw Poland passing a new law against COVID-19 that also increased the criminal penalty for HIV exposure, and number of disappointing HIV criminalisation higher court appeals in the US (Ohio), and Canada (Ontario and Alberta) that appeared to ignore science over stigma.

And yet, despite the many difficulties of 2020, the movement to end unjust HIV criminalisation has continued to gain momentum.

In the United States, Washington State modernised its HIV-specific criminal law in March, reducing the ‘crime’ from a felony to a misdemeanour, adding in a number of defences, and eliminating the sex offender registration requirement.  Earlier this month, legislators in Missouri published plans to modernise its HIV-specific criminal law next year.

In Europe, Sweden abolished the legal requirement to disclose HIV status in March, the Spanish Supreme Court set an important precedent for HIV criminalisation cases in May, and in June, Scottish police ended the stigmatising practice of marking people living with HIV as ‘contagious’ in their database.

In Francophone Africa, HIV-specific criminal law reform in Benin and across the region is looking likely thanks to a recognition that existing laws do not reflect up-to-date science.

And in Eastern Europe and Central Asia, a process to completely abolish the draconian HIV-specific criminal law in Belarus has begun.

There is still so much more to do, however.  Despite these successes, as well as the many milestones the HIV JUSTICE WORLDWIDE movement has achieved since its launch in 2016, we will not rest until everyone living with HIV in all their diversity is treated equally, fairly and justly by all actors of the criminal justice system.

China: Breaking with confidentiality practices, doctors in Yunnan will share patients’ HIV status with their partners

Yunnan Authorizes Doctors to Reveal Patients’ HIV Status to Partners

The move is aimed at reducing local infections as well as cases in which people contract HIV without knowing their partners are positive.

Breaking with standard confidentiality practices, doctors in Southwest China will soon be allowed to share patients’ positive HIV tests with their romantic partners.

In a regulation published Saturday, authorities in Yunnan province outlined a number of new provisions aimed at reducing local HIV infections. Among the rules, set to come into effect in March, is a requirement that people who undergo health checks must notify their partners should they test positive for HIV. If the infected person refuses, medical staff will be authorized — but not required — to intervene, and the person could also face unspecified legal consequences.

“In the case of no self-disclosure, the health and medical departments of the province have the right to reveal the HIV carrier status to the patient’s intimate partner,” reads the new regulation. However, further disclosure, such as to the person’s workplace, remains illegal without their consent.

According to the World Health Organization, nearly 1 million people in China were living with HIV at the end of last year. Earlier this month, the organization said the rate of new infections in people aged 60 or above is rising faster than among any other demographic.

Previously, China’s Regulation on AIDS Prevention and Treatment recommended that anyone living with HIV notify sexual partners of their carrier status and take “necessary precautions” to prevent transmission. The regulations also state that those who intentionally infect others “shall bear civil liability for (paying) compensation.” And according to the country’s Criminal Law, knowingly infecting sex workers with HIV or another “serious venereal disease” is punishable by up to five years in prison.

In 1986, premarital health checks became compulsory for Chinese couples hoping to register for marriage. Though the requirement was abolished in 2003 when the Ministry of Civil Affairs released its new marriage registration regulation, many couples continue to get screened by medical professionals before marriage as a precaution.

When people learn they have HIV or another sexually transmitted infection during these health checks but refuse to tell their partners, it puts doctors in uncomfortable positions — especially if the partner contracts the disease later.

In August, a newly married man who found out about his wife’s HIV carrier status by flipping through her medical records sued the company that conducted their premarital health check for ignoring his “right to know.” Though the case was ultimately dismissed, it sparked online discussion about personal ethics.

Contributions: Ye Ruolin; editor: David Paulk.

Russia: Ministry of Health introduces new rules on mandatory HIV testing for workers in certain professions

Russia approved new rules for compulsory HIV testing

Google translation, please scroll down for original article in Russian

The Ministry of Health has approved new rules for compulsory examination for the detection of the human immunodeficiency virus. The document comes into force on January 1, 2021, said Oleg Salagay, Deputy Minister of Health of the Russian Federation.

These rules require a detailed description of how mandatory medical certification is carried out, including laboratory diagnostics, preliminary and subsequent counseling on HIV prevention issues, and the issuance of an official document.

“Compulsory HIV testing is not carried out in relation to all citizens. It is necessary only in relation to workers of certain professions, the list of which is fixed by a separate normative act, “Salagay said in his Telegram channel .

Earlier, the Ministry of Labor of the Russian Federation proposed to approve the list of professions whose employees will have to undergo mandatory testing for HIV infection during medical examinations upon admission to work. The list includes:

  • doctors, paramedics and junior medical personnel of centers for the prevention and control of AIDS, health care institutions, specialized departments and structural units of health care institutions engaged in direct examination, diagnosis, treatment, service, as well as conducting forensic medical examination and other work with persons infected with the human immunodeficiency virus, having direct contact with them;
  • doctors, middle and junior medical personnel of laboratories (groups of laboratory personnel) who screen the population for HIV infection and study blood and biological materials obtained from persons infected with the human immunodeficiency virus;
  • scientists, specialists, employees and workers of research institutions, enterprises producing medical immunobiological preparations and other organizations whose work is related to materials containing the human immunodeficiency virus.

The list of specific positions and professions of employees is determined by the head of an institution, enterprise or organization.

В России утвердили новые правила обязательного теста на ВИЧ

Минздрав утвердил новые правила обязательного освидетельствования на выявление вируса иммунодефицита человека. Документ вступает в силу с 1 января 2021 года, сообщил заместитель министра здравоохранения РФ Олег Салагай.

Эти правила предполагают детальное описание того, каким образом проводится обязательное медосвидетельствование, включая лабораторную диагностику, предварительное и последующее консультирование по вопросам профилактики ВИЧ и выдачу официального документа.

«Обязательное тестирование на ВИЧ не проводится по отношению ко всем гражданам. Оно необходимо лишь в отношении работников отдельных профессий, перечень которых фиксирован отдельным нормативным актом», — сообщил Салагай в своем Telegram-канале.

Ранее Минтруд РФ предложил утвердить перечень профессий, работники которых должны будут пройти обязательное тестирование на ВИЧ-инфекцию при проведении медосмотров при поступлении на работу. В перечень вошли:

  • врачи, средний и младший медицинский персонал центров по профилактике и борьбе со СПИДом, учреждений здравоохранения, специализированных отделений и структурных подразделений учреждений здравоохранения, занятые непосредственным обследованием, диагностикой, лечением, обслуживанием, а также проведением судебно-медицинской экспертизы и другой работы с лицами, инфицированными вирусом иммунодефицита человека, имеющие с ними непосредственный контакт;
  • врачи, средний и младший медицинский персонал лабораторий (группы персонала лабораторий), которые осуществляют обследование населения на ВИЧ-инфекцию и исследование крови и биологических материалов, полученных от лиц, инфицированных вирусом иммунодефицита человека;
  • научные работники, специалисты, служащие и рабочие научно-исследовательских учреждений, предприятий по изготовлению медицинских иммунобиологических препаратов и других организаций, работа которых связана с материалами, содержащими вирус иммунодефицита человека.

Перечень конкретных должностей и профессий работников определяется руководителем учреждения, предприятия или организации.

US: Council of State and Territorial Epidemiologists recommends the elimination of HIV-specific statutes criminalising HIV and the end to prosecutions

CSTE recommendations for modernization of laws to prevent HIV criminalization

I. Statement of the Problem:

The Ending the HIV Epidemic (EHE): A Plan for America initiative aims to reduce new HIV infections in the United States by 90% by 2030 through leveraging critical advances in HIV prevention, diagnosis, treatment and outbreak response. People with living with HIV (PLWH) and stakeholders continue to raise concerns about HIV criminalization as a potential barrier to achieving HIV prevention and care goals . These laws may prevent public health agencies from responding effectively to the HIV epidemic by perpetuating stigma, racism, xenophobia, social and economic injustice, and reducing willingness for people to participate in HIV prevention, testing, and care.

HIV criminalization is defined as laws and policies that are used to criminalize the transmission of or exposure to HIV, or to enhance sentencing because a person has HIV. These laws and policies put PLWH potentially at risk for prosecution in all states, with the majority of states having HIV-specific laws in place. However, state laws, and the application of these laws, vary widely. Most laws do not account for the actual scientificallybased level of risk engaged in or risk reduction measures undertaken by PLWH or persons exposed to HIV. In some states, public health officials are required by law to share protected health information with law enforcement officials.

HIV criminalization has not been shown to be an effective public health intervention. There is no association between HIV infection diagnosis rates and the presence of state laws criminalizing HIV exposure. Studies have suggested these laws are associated with decreased HIV testing and increased HIV prevalence. Surveys among PLWH have not demonstrated that these laws have an effect on sexual practices and therefore, these laws do not serve as a deterrent for potential HIV exposure. Given the punitive but ineffectual outcomes of these laws on PLWH, existing HIV-related laws must be eliminated.

II. Statement of the desired action(s) to be taken:

HIV criminalization laws and policies do not reflect the current science of HIV, but instead criminalize behaviors posing low or negligible risk for HIV transmission, stigmatize and discriminate against PLWH, and undermine national and local HIV prevention efforts. CSTE joins numerous other organizations across the globe in strongly opposing any criminalization of HIV exposure or transmission and recommends that all states, U.S. territories, and local jurisdictions:

1) Eliminate HIV-specific statutes that criminalize HIV, including HIV-specific penalties under general statutes.

2) Eliminate prosecution of HIV under general statutes (non-HIV specific criminalization).

3) Change relevant state and local statutes to specifically prohibit the use of HIV-related, public health data for uses outside of public health purposes, including law enforcement, family law, immigration, civil suits, or other legal purposes.

Public health agencies are the central authorities of the nation’s public health system and must actively inform public policy to ensure laws, regulations, and policies are data driven and scientifically sound. Local, state, and territorial public health officials can do this by engaging in the following activities.

1. Investigate their city, county, and/or state’s laws, regulations, and policies on HIV criminalization and data protection.

2. Assess the disproportionate impact of HIV criminalization laws (in their city, county, and state) on racial, ethnic, immigrant, LGBTQ and other priority populations (now referred to collectively as priority populations). Council of State and Territorial Epidemiologists Interim-20-ID-05 2

3. Engage with and educate public health legal counsel to assure they are up to date on surveillance technology and science of HIV transmission.

4. Review internal legal counsel and health department policies and practices with regard to public health data release for law enforcement purposes and prohibit or significantly limit data release or strengthen data protections when data must be released.

5. Provide unequivocal public health leadership, education, support and information to elected state and local officials, prosecutors, and law enforcement on the relative risks of transmission and the dangers of a punitive response to HIV exposure on our ability to respond to the epidemic.

6. Provide information at legislative or governmental hearings emphasizing data-driven and scientifically sound public health arguments against HIV criminalization.

7. Engage community stakeholders most affected by the epidemic on the impact of HIV criminalization on their lives. Invite them to partner with their relevant public health department to eliminate these laws.

8. Ensure states and local jurisdictions assess the impact of HIV criminalization and address action steps for HIV decriminalization in their EHE initiative implementation plans and the disproportionate impact on priority populations.

9. Identify and share best practices with elected state and local officials, law enforcement and community stakeholders related to successes in changing laws and policies to prevent HIV criminalization.

10. Provide information to the media on advances in HIV treatment and prevention and the detrimental impact of HIV criminalization and prosecution on public health efforts.

III. Public Health Impact:

Preventing HIV criminalization will diminish the burden that has been placed on priority populations and strengthen public health interventions. HIV decriminalization has the potential to engage more individuals in HIV testing and care, leading to earlier antiretroviral treatment (ART) initiation, increased viral suppression, and decreased transmission. Furthermore, prevention activities can be strengthened as more individuals become aware of their HIV status and potential risks for acquiring HIV.

1. Increase HIV testing. Studies suggest that HIV criminalization laws deter participation in HIV testing. Deterrence to HIV testing propagates HIV transmission and results in missed opportunities for HIV care and early ART initiation specifically in priority populations. Thirty-eight percent of new HIV transmissions are attributed to PLWH who are unaware of their status; therefore, HIV testing is essential to increasing awareness among PLWH.

2. Decrease stigma and discrimination related to HIV. Given the heightened community concerns regarding law enforcement actions in minority communities, it is critical that public health activities are decoupled from law enforcement. HIV criminalization perpetuates stigma and discrimination, which are significant barriers to EHE, thereby fueling the epidemic. Eliminating HIV criminalization laws will reduce stigma and may help meet EHE targets.

3. Remove a disincentive to participation in public health efforts (i.e., EHE Pillars: Prevent, Diagnose, Treat, and Respond) Trust is the cornerstone of public health, yet communities of color have a long history of systemic and institutional racism that has eroded trust in public health. Public health officials and community members have raised concerns that routinely-collected public health data can be misused for HIV criminalization and contribute to community opposition to partner services and cluster response. Removing HIV criminalization laws and securing HIV data protections will help to rebuild trust in public health and engage communities of color in critical public health services.

The full statement is available here: https://cdn.ymaws.com/www.cste.org/resource/resmgr/ps/positionstatement2020/Interim-20-ID-05_HIV_Final.pdf

The Importance of Human Kindness and
Connection: Sero’s Holiday Card Project

In an era where the term ‘lockdown’ is used to limit our movements, spare a thought for the many prisoners living with HIV (some of whom have been unjustly convicted under HIV criminalisation laws) who are experiencing real lockdowns and severe isolation.

With community support interventions becoming increasingly formalised, and NGOs pushed to operate in terms of strategic plans, deliverables, outputs and outcomes, Sero’s Holiday Card Project stands as a rare example of an organisation recognising the worth of a project focused solely on gestures of basic human kindness.

Last year, the project delivered Holiday cards to around 900 incarcerated people, most of whom are living with HIV. For some, it was the only mail they received all year.

So how did the Holiday Card Project come to be, has it made a difference, and how can you help this year?


Back in the 1980s and ’90s, Cindy Stine lost a lot of friends to HIV. In 1996, just before effective treatments became available, she lost a close friend who was like a son. She made a promise to him that she would continue to be involved in the AIDS response. That’s a promise she’s kept.

Cindy Stine of the Sero Project

In 2011, Cindy was serving on the board of a local LGBT centre when she invited two speakers from the fledgling Sero Project to speak at an event. The speakers were Sean Strub, Sero’s Executive Director, and Robert Suttle. Sean introduced the audience to the concept of HIV criminalisation, a new issue for most, including Cindy. Robert talked about what it means to live as an HIV criminalisation survivor, explaining that as the result of an HIV non-disclosure charge, he served six months in the Louisiana state prison and would be registered as a sex offender for 15 years. Robert showed an image of his driver’s license, with ‘sex offender’ stamped in bold red lettering: ID he has to show often and in many different circumstances.

Cindy approached Sean and Robert to let them know that she wanted to help. A few days later, Sean rang Cindy and invited her to his office where he showed her a stack of letters that Sero had received from people in prison. Sean asked Cindy if she’d volunteer to take on the task of answering the letters. She agreed.

Things could have ended there, with Cindy answering people’s individual letters, but as Cindy read those letters week after week, each letter more heart-breaking than the last, she began to really appreciate the isolation, loneliness and desperate need for connection experienced by many of those inside. She talked it over with her Sero colleagues, and they decided their efforts to build a movement against HIV criminalisation needed to expand to be more inclusive of those who were incarcerated; those directly impacted by HIV criminalisation. They decided to explore how they could support development of a prisoners’ network, starting by compiling a database of contact details of those who’d written.

As Sero grew, Cindy was employed to take on community education and other projects but her work answering prisoners’ letters continued. Cindy says of those letters, “sometimes the people writing didn’t even have access to paper, so they’d write on any scrap of paper they could find – recycled envelopes or bits of paper torn off something else. Many of those sending letters weren’t really literate but they wanted to communicate.”

As the 2015 Holiday season approached, Cindy found the letters got harder to read. “A lot of people wrote about loneliness and about their families disowning them after finding out they had HIV, or were gay, or were transgender. People felt they’d been thrown away and forgotten.” Then she had a simple thought, “Wouldn’t it be nice for them to know that they’re not alone.” Then another, “We should send Holiday cards”. She took the idea to Sean, who agreed.

By then, Cindy’s database was so large that she realised Sero would need to prioritise who got cards, focusing on those who were incarcerated as a result of HIV, or they had HIV or another debilitating illness. Cindy also wanted to ensure each person got at least three or four cards but … how to go about it? Cindy put out a call to the 900 or so people on the Sero list-serve asking if anyone was interested in writing some Holiday cards. The response was overwhelming. Many offered to help, with some asking to do 20 cards, some asking to do 200.

The Holiday Card Project has continued each year since then. People express an interest, Cindy sends them a list of first names; they write message on the cards, put them in blank envelopes and return them to Sero; Cindy sorts them, addresses them, and mails them off.

Those who write cards come from all different parts of the community, including some working in other HIV advocacy organisations, some parents of prisoners, and some people living with HIV. People are asked not to ask personal questions but to write messages of support: things like ‘hope you’re doing well’, ‘we’re thinking of you’, and ‘you’re not forgotten’. Some write about themselves, their experience living with HIV, their thoughts and prayers. Some write, ‘we’re thinking of you when we fight HIV criminalisation’.

Sero’s staff and volunteers

One group gets together and spends a day each year writing Holiday cards. People come from all over, saying it feels really good coming into a non-judgemental space and writing messages from the heart. Sometimes Sero will set up a table at a conference and invite people to write cards. Others write cards at home. People feel involved. Each step in the process has meaning: the choice of card, the choice of words, with many people sending their cards with stamps to send them on, to further support the project.

Last Holiday season, about 900 people received cards in facilities across the US, including people on death row. The responses from those who received cards is humbling. Some said, it was the only card they’d received all year, but those cards meant that they knew they were not forgotten. They couldn’t describe the feeling of hearing someone from the mailroom say, ‘You’ve got mail’. They knew that somebody out there had thought enough of them to send a card. Recently Cindy received a letter from a man who’s recently been released. He said that for the last three years he’d so looked forward to those cards as it was the only mail he got. It meant a lot that people had taken the time to write.

The project is not without its challenges. Cindy spends considerable time keeping track of people, as prisoners are often moved. There are also major issues regarding mail screening. Although Cindy has worked to build a rapport with those managing mail distribution at many of the prisons, that hasn’t guaranteed mail is always received. Mail screening rules differ from state to state, institution to institution, and the rules keep changing. Some prisons have now banned cards altogether, some won’t allow glue or glitter or coloured paper, etc. If mail is considered contraband it may be thrown out or returned to Sero. That process has at times driven Cindy to photocopy returned cards, sending the copies in the hope the person will still receive the good wishes.

The Holiday Card Project may have modest goals – to show compassion and care to those who feel abandoned, but it has delivered far more. It has made a difference to the lives of many, letting them know that there are people outside of prison ready to provide support. It has raised awareness about HIV criminalisation and provided a mechanism for people to show they care. It has also helped build trust between prisoners and Sero, a facor that has proven critical to the development of a stronger prisoners’ network and greater engagement with Sero. A stronger prisoners’ network has meant more support for those inside, and it has also resulted in other great projects, like Turn It Up, the health magazine that includes information about HIV for those in prison, largely written by people who are, or have been, incarcerated.

Some of Sero’s Holiday cards

While Sero is best known for its HIV criminalisation reform programmes, its efforts to support network building and empowerment have proven equally important. Sero operates from the belief that those most directly impacted should be at the centre of this work, which is why facilitating the creation and strengthening of networks of People Living with HIV and allies, particularly those representing key populations, remains critical and a priority.

Every year the Holiday Card Project has grown, with prisoners writing to Cindy to let her know if they’ve been moved to another facility. Others write saying, “a friend of mine got cards. Can I be put on the list?” Parents get in touch too, asking for their children to be added to the list, and also writing letters of thanks for cards received.

Still, Cindy thinks there is room for the project to grow; sending cards for holidays celebrated by other religions at other times of the year, and also considering whether cards could be sent for some non-religious events, such as Halloween or Thanksgiving. That way the project can become more inclusive and people won’t have to wait an entire year for mail. Of course, that will mean attracting more people to write cards so that more people can receive them.

 

If you’re interested in supporting the work of the Holiday Card Project, please contact Cindy at cindy.stine@seroproject.com, Subject – Holiday Card Project.