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».

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

We Are People, Not Clusters! Why public health surveillance using blood taken for HIV resistance testing risks doing more harm than good

by Edwin J Bernard, HJN’s Executive Director

A series of articles and editorials in the October 2020 issue of the American Journal of Bioethics published last Friday examine a growing concern amongst community leaders of people living with HIV and our scholarly allies: the use of blood taken from people living with HIV during routine testing prior to starting or changing antiretroviral therapy in surveillance databases, without our permisssion, for public health purposes. 

This is already taking place across the United States and in some Canadian provinces, and is currently being considered elsewhere in the world.

The rollout of so-called ‘molecular HIV surveillance’ to identify ‘clusters’ of transmissions to attempt to further improve public health responses to HIV is a growing source of anxiety and concern for people living with HIV in the US and Canada, especially for people who are already marginalised and criminalised in other ways, because they can’t be certain that this data won’t be shared with law enforcement or immigration authorities, which can lead to prosecution and/or deportation.

Coming to Facebook Live on 30th September – HIV Justice Live! Whose Blood is it, Anyway?  Like or follow us on Facebook to watch and participate in the first of our new interactive webshows, which will focus on molecular HIV surveillance.

 

In our lead guest editorial, entitled ‘We Are People, Not Clusters!’ which I co-authored with Alexander McClelland, Barb Cardell, Cecilia Chung, Marco Castro-Bojorquez, Martin French, Devin Hursey, Naina Khanna, Brian Minalga, Andrew Spieldenner, and Sean Strub, we support the concept of “HIV data justice” put forth in the lead target article, by Stephen Molldrem and Anthony Smith, Reassessing the Ethics of Molecular HIV Surveillance in the Era of Cluster Detection and Response: Toward HIV Data Justice.

“HIV data justice draws on the collective resources of the HIV/AIDS movement to build new alliances aimed at providing affected individuals and communities with greater control over how their data are utilized in the healthcare system, with the paired aim of providing them with greater access to better services on terms of their own choosing.”
 
Molldrem and Smith

 

In the editorial, we welcome Molldrem and Smith’s critique of the controversial rollout of molecular HIV surveillance (MHS) in the United States, which explores three intersecting concerns:

(1) the non-consensual re-purposing of personal health information and biomaterial for public health surveillance;

(2) the use of molecular HIV surveillance data in larger databases to find ‘clusters’ of infections and to make determinations about transmission directionality, and the criminalising implications that follow such determinations; and

(3) the way MHS amplifies the targeting and stigmatisation of already oppressed and marginalized communities.

The editorial questions the rationale behind the use of MHS as one of four pillars of the US Centres for Disease Control (CDC) End The Epidemic (ETE) Plan and calls for the abolition of molecular HIV surveillance in the United States as it is currently being rolled out by the CDC because it blurs the boundaries between consent and criminalisation.

Instead, we envision a future of new participatory and intersectional racial and viral justice possibilities, one which ensures the lives, voices, self-determination, and autonomy of people living with HIV are central to HIV research and public health practice.

Further reading

Bryn Nelson. Questioning the Benefits of Molecular Surveillance. POZ Magazine, July-August 2020.

US: States with HIV criminalisation laws have a lower PrEP-to-need ratio, which is detrimental to HIV prevention efforts, study shows

State Laws Key To HIV Prevention Efforts

PHILADELPHIA (September 8, 2020) – HIV prevention remains a public health priority in the United States. Pre-exposure prophylaxis (PrEP) is a drug regimen recommended for individuals who have engaged in behaviors that place them at elevated risk for HIV. When used consistently, daily oral PrEP has been shown to reduce HIV transmission by 99 percent. However, despite increases in PrEP awareness and uptake over the past several years, data show that four of five people who could benefit from PrEP did not access the medication in 2018.

In an article for the September issue of Health Affairs, researchers from the University of Pennsylvania School of Nursing (Penn Nursing) explored associations between state-level policies and PrEP uptake. They found that states with HIV criminalization laws (i.e., statutes that criminalize status non-disclosure) had a lower PrEP-to-need ratio, and states with comprehensive nondiscrimination laws for sexual and gender minorities had a higher PrEP-to-need ratio.

“Our study corroborates the growing consensus that HIV criminalization laws offer little to no public health benefit and inhibit HIV prevention efforts,” says Stephen Bonett, PhD, RN, the first author of the article, and postdoctoral fellow at Penn Nursing’s Program for Sexuality, Technology and Action Research (PSTAR).

“Given the evolving state of HIV prevention and the growing body of evidence showing that HIV criminalization may hinder public health efforts, state governments should move toward repealing HIV criminalization laws,” the authors write. “In addition, legislative efforts should be directed toward improving access to HIV treatment and prevention and reducing stigma and discrimination against people living with HIV.”

The article, “State-Level Discrimination Policies and HIV Pre-exposure Prophylaxis Adoption Efforts in the U.S.” is set for publication this fall. Co-authors of the article include Steven Meanley, PhD, MPH, and José Bauermeister, PhD, MPH, both of Penn Nursing; Steven Elsesser, MD of Penn Medicine.

About the University of Pennsylvania School of Nursing

The University of Pennsylvania School of Nursing is one of the world’s leading schools of nursing. For the fifth year in a row, it is ranked the #1 nursing school in the world by QS University and is consistently ranked highly in the U.S. News & World Report annual list of best graduate schools. Penn Nursing is currently ranked # 1 in funding from the National Institutes of Health, among other schools of nursing, for the third consecutive year. Penn Nursing prepares nurse scientists and nurse leaders to meet the health needs of a global society through innovation in research, education, and practice. 

US: Criminalizing and stigmatizing HIV only leads to more HIV infections

For transgender Floridians, stigma and fear of arrest could lead to new HIV crisis | Opinion

There’s another public health crisis laying in the shadows of COVID-19, and it’s completely preventable: HIV. More than 20,000 people are living with HIV in Fort Lauderdale – and more than 100,000 across Florida. New HIV infections have been increasing in Florida every year since 2013, and the state’s budget for combating HIV increased 15% between 2015 and 2018.

HIV currently has a disproportionate impact on certain communities. Only one in four people in Fort Lauderdale are Black, but they represent nearly half the city’s population of people living with HIV. Latinas are twice as likely as white women in Fort Lauderdale to be living with HIV. Transgender people are 49 times more likely than cisgender people to have HIV.

Transgender people also face high rates of violence, with transgender people of color being particularly impacted. In 2019, more than 20 transgender people were killed, virtually all of them Black or Latinx. Far too often, their names don’t make the news, names like Tony McDade or Bree Black, both of whom were killed in Florida this year.

Transgender people of color, and in particular transgender women of color, face layers of stigma. Transphobia, racism, and sexism all take a toll on a person and make them more vulnerable in many aspects of their life, including being more likely to contract HIV.

We have the tools and knowledge to stop HIV in its tracks. Taking simple precautions greatly minimizes transmission. Testing can offer quick results. And drug regimens can treat people living with HIV and prevent it from spreading. But a lack of understanding and prejudice against people living with HIV prevents us from taking advantage of these tools. Money is not the issue – the law is.

Florida’s very tough HIV criminalization laws have made a bad situation worse. In Florida, having consensual sex, donating blood or organs, or engaging in sex work without disclosing one’s HIV status is a third-degree felony, which could lead to five years in prison and a $5,000 fine. The law doesn’t take into account whether protection is used, if people maintain a drug regimen that virtually eliminates any chance of passing on the disease, or the fact that blood is screened – for many diseases, including HIV – before being donated.

Not only are HIV criminalization laws antiquated and discriminatory, they have a devastating impact on public health and the perception of HIV. When our own state government is labeling those living with HIV as criminals, it perpetuates stigma. It creates a fear of basic education, getting tested or talking about HIV, even with friends and family. It’s hard to blame them considering five years in jail is a possibility.

Our state has created a vicious cycle: people choose to not know their status out of fear of repercussions. Therefore, they don’t receive treatment, leading to more people unknowingly spreading the disease. Criminalizing and stigmatizing HIV only leads to more HIV infections.

Earlier this month, the results of the “GLAAD-Gilead State of HIV Stigma Survey” were published, measuring attitudes towards HIV, and the results showed we still have a long way to go. Nearly 6 in 10 Americans wrongfully believe that “it is important to be careful around people living with HIV to avoid catching it.” That’s not true and the medical community has known this for decades. But when it’s difficult to educate people on the disease, misinformation spreads and has a damaging impact on public health.

Knowing that transgender people are more likely to be affected by HIV, at TransInclusive, we spend a considerable amount of time reaching out to that community. When you add the stigma transgender people face to the stigma that surrounds HIV, it makes our outreach efforts that much harder. Moreover, it becomes even more difficult to ensure transgender people have the resources needed to prevent the spread of HIV.

The survey found that one in two Americans would be uncomfortable with a partner or spouse living with HIV, which only increases the disproportionate impact HIV has on transgender people, considering they have the highest rates of infection. Ignoring these disparities will only continue to harm the communities most at risk of contracting HIV.

Training and resources from allies are part of the solution. Grants from private-sector partnerships like the Gilead COMPASS Initiative have helped us build a grassroots effort to prevent the spread of HIV by going into the Fort Lauderdale community to educate people and hosting group sessions where individuals can learn without fear of judgment. During the social distancing measures of the COVID-19 pandemic, we’ve held our “Open Night Thursday” series virtually to allow people from our community to talk to one another, learn about the resources available to them, and feel a sense of belonging.

But we must reach beyond our community, and to our lawmakers, to make the impact we need.

Changing misperceptions has to happen on the frontlines of health care and in the halls of state houses. Stigma will not go away if laws that criminalize HIV remain. Florida can’t end the HIV epidemic overnight, but the state can take steps now to stop the rise of HIV infections and avoid another health crisis. Ending the criminalization of HIV and educating our state about how to prevent its spread will help fight the pervasive stigma that still exists – and gets us that much closer to ending HIV in Florida.

Tatiana Williams is the co-founder and executive director of Transinclusive Group in Fort Lauderdale.

Watch all the videos of Beyond Blame @HIV2020 – our “perfectly executed…deftly curated, deeply informative” webshow

Earlier this month, advocates from all over the world came together for two hours to discuss the successes and challenges of the global movement to end HIV criminalisation.

All of the recordings of Beyond Blame: Challenging HIV Criminalisation for HIV JUSTICE WORLDWIDE are now available on the HIV Justice Network’s YouTube Channel.

“HUGE pleasure 2B at #BeyondBlame2020 conference – deftly curated, deeply informative; speakers were great; the passion & commitment to #HIVjustice was palpable. Much progress yet a sober reminder that the work is far from over.”

Kene Esom, Policy Specialist: Human Rights, Law and Gender, United Nations Development Programme (UNDP)

 

The full-length director’s cut version – with enhanced audio and video – is now available in English as well as with the audio track of the recorded simultaneous translation in French, Spanish, Russian, and Portuguese.

The English version is also available as a YouTube playlist in ‘bite-size’ chunks, with each segment of the webshow available as standalone videos.  This means, for example, if you just want to watch (or share) the segment on ‘women challenging HIV criminalisation in Africa‘, or on ‘bringing science to justice, and justice to science‘, it’s now possible.

“That webinar was perfectly executed. Great sound, engaging transitions (they actually played people on and off!), and multiple speakers in various collections. Having ALL OF THEM back at the end showed the breadth of this technical accomplishment and the depth of the speakers’ field of expertise. Not everyone may notice these things but boy, I sure do, and it was totally pro. I’ve seen big name conferences who couldn’t get this right… Congratulations all around, and especially to [director] Nicholas Feustel.

Mark S King, My Fabulous Disease

 

We have also made available for the first time the standalone recording of Edwin Cameron’s closing speech, which inspired so many.  The transcript is included in full below.

“We have been being battling this fight for many years. Since the start of the HIV epidemic we as gay men, as gay women, as queers, as transgender people, as sex workers, as people using drugs, have been persecuted by the criminal law. And I’m here to say, “Enough! Enough!

We have achieved a great deal with our movement, with the HIV Justice Network. We have achieved a great deal in conscientizing law makers, law givers and the public. It is now time for us to join in unison to demand the end of these stigmatising, retrograde, unproductive, hurtful, harmful laws.

It is a long struggle we’ve engaged in. And it’s one that has hurt many of us. Some of us here today, some of us listening in, some of us who have spoken, have felt the most brutal brush of the law. They have been imprisoned, unjustly prosecuted, unjustly convicted, and unjustly sent away.

HIV is not a crime. But there is more to it. Criminalising HIV, criminalising the transmission or exposure of HIV, as many countries on my own beautiful continent Africa do, is not just stupid and retrograde. It impedes the most important message of the HIV epidemic now, which is that this epidemic is manageable. I’ve been on antiretroviral treatment now for very nearly 23 years. My viral load has been undetectable for more than 20.

We can beat this, but we have to approach this issue as public health issue. We have to approach it rationally and sensibly, and without stigma, and without targeting people, and without seeking to hurt and marginalise people.We’ve made calamitous mistakes with the misapplication of the criminal law over the last hundred years, in the so-called ‘war on drugs’. We continue to make a calamitous mistake in Africa and elsewhere by misusing the criminal law against queer people like myself. We make a huge mistake by misusing the criminal law against people with HIV.

Let us rise today and say, “Enough!”

 

When considering the criminalisation of COVID-19, lessons from HIV should be retained

Marginalised communities will not get justice from criminalising Covid-19 transmission

The criminalisation of the virus would create greater barriers to accessing healthcare systems already preventing many people from getting treatment.

After it was announced that no further action would be taken by police regarding the death of Belly Mujinga, a railway worker who contracted coronavirus after reportedly being spat on, there was national outcry. Her name has been plastered on placards at Black Lives Matter protests, while the public has pointed out that a man in Scotland who spat on a police officer while “joking” about coronavirus in April has been jailed for a year. But while this outrage is valid in the face of a government who continues to show their blatant disregard for black lives, criminalisation of diseases has been proven to be an ineffective tool for justice.

Over the past few months, parallels have been drawn between the Covid-19 pandemic and the HIV epidemic. Both viruses are communicable (they can be passed between people); both have been racialised, leading to racist and xenophobic attacks and stereotyping; community mobilisation has demanded adequate government public health responses for both health emergencies; and the impact of both viruses has highlighted the need for a global health approach which transcends borders. 

When the World Health Organisation (WHO) declared Covid-19 a pandemic, many HIV organisations and activists advocated that the transmission of the novel coronavirus should not be criminalised. As public fear of Covid-19 grew, HIV advocates predicted the negative impact on public health and possibility of human rights violations, similar to those seen for people living with HIV. 

“Despite the evolving scientific knowledge, criminalisation laws have been written and implemented across the world faster than the development of the general understanding of the virus itself”

This strain of coronavirus is new and scientists are developing their understanding of it. In the past few weeks, there has been confusion about the probability of asymptomatic transmission (transmitting the virus when a person does not have Covid-19-like symptoms), as the WHO had previously commented that it was “very rare” and later stated that this wording had misled people. Despite the evolving scientific knowledge, criminalisation laws have been written and implemented across the world faster than the development of the general understanding of the virus itself. Globally, countries have implemented or have proposed laws against Covid-19 transmission and even exposure, without transmission, including Canada, France, India, and South Africa.

Often, the aim of criminalisation is to facilitate a tool for prevention and deterrence (to discourage people from passing on a virus) or as punishment for those who have or may have passed on a virus. HIV advocacy has illustrated over the years that the criminalisation of transmission or exposure is ineffective, and disproportionately impacts marginalised communities and negatively impacts public health.

In their Statement on Covid-19 Criminalisation, published in March, the HIV Justice Worldwide Steering Committee wrote that hastily drafted laws, as well as law enforcement, driven by fear and panic, are unlikely to be guided by the best available scientific and medical evidence – especially where such science is unclear, complex and evolving. “Given the context of a virus that can easily be transmitted by casual contact and where proof of actual exposure or transmission is not possible, we believe that the criminal justice system is unlikely to uphold principles of legal and judicial fairness, including the key criminal law principles of legality, foreseeability, intent, causality, proportionality and proof.”  

Since that statement was issued, internationally coronavirus laws have been weaponised against the most marginalised within society, as is the case with HIV criminalisation laws. The Ugandan government, for example, has used coronavirus laws to target marginalised LGBTQI+ groups, and in the UK, people of colour are fined more than the white population under coronavirus laws, in some cases leading to unlawful charges. In some cases people were even charged under the wrong law (e.g. enforcing Welsh law in England).

The director of legal services at the Crown Prosecution Service (CPS), the public agency that conducts criminal prosecutions in England and Wales, found that 24% of cases reviewed had been charged incorrectly. In May a CPS press statement cited the speed and pressure to implement the laws as the cause of the wrongful charges. Across the Global North, it has been well documented that racialised communities are disproportionately impacted by Covid-19 and the Human Rights Campaign Foundation anticipates that LGBTQI communities will be disproportionately impacted by the virus. This is due to a myriad of reasons underpinned by systemic discrimination.

“Criminalisation of transmission or exposure is ineffective, and disproportionately impacts marginalised communities and negatively impacts public health”

HIV research has shown little evidence that criminalisation laws prevent transmission, in fact, it’s evidenced that such laws are bad for public health and fuel reluctance to get tested and treated. In the UK, testing and treatment of Covid-19 is free, as is the case with many other communicable diseases to remove the barrier to testing and treatment. Free testing and treatment access, irrespective of immigration status, is important, however, a briefing paper from Medact, Migrants Organise and New Economics Foundation (NEF), has shown that migrant communities blocked from healthcare because of the hostile environment, that “the coronavirus ‘exemption’ from charging and immigration checks is not working” and people have been asked to show their passports, and that people face additional obstacles such as language barrier and digital exclusion from emergency services. 

Criminalisation exacerbates public health issues: in a Channel 4 report, Migrants Organise spoke of a man who died at home for fear of being reported to immigration authorities if he accessed healthcare. The threat of immigration enforcement disproportionately impacts those in precarious work and those with precarious migration status, all of whom are more likely to come from racialised groups and in some cases groups which are hyper-surveilled and criminalised.

The role of healthcare and access to it needs to be reimagined, where people are viewed as patients not passports and healthcare professionals are not the extended arm of the Home Office. Governments must implement better employment rights, so that employers are held to account and do not put staff such as Belly Mujinga, in harmful positions. Governments must provide better statutory sick pay so those in precarious work do not have to choose between their health and putting food on the table. We need to overhaul systemically discriminatory processes that don’t look after the most vulnerable, rather than implementing laws – such as criminalisation – that will systematically punish them.