Global networks and organisations call on the Global Fund to safeguard and support community systems strengthening

Open letter to the Global Fund to Fight AIDS, TB, and Malaria

10 November 2020

Dear Board Leadership, Board Members and Peter Sands,

Community-led and community-based health systems are essential for Resilient and Sustainable Systems for Health that are person-centred, equitable, evidence-based and inclusive

We are a group of global networks and organisations working to advance global health. We have come together to call on decision makers, civil society, technical experts, relevant private sector and other stakeholders from across the global health response to explore how vertical disease-oriented health programmes can integrate, evolve and transform in order to respond and meet the health needs of all people everywhere, and ultimately achieve the highest attainable standard of health through universal health coverage (UHC).

The COVID-19 pandemic (exacerbated by the collision of communicable and noncommunicable disease) has brought the importance of resilient and sustainable systems for health into sharp focus as the first line of defence against the outbreak of disease. 

However, not all COVID-19 responses have recognised the importance of scaling up the work on human rights, the removal of legal and other barriers that hinder access to health, and the importance of community-led and community-based health infrastructure and systems. 

The vital role of communities and civil society has been amply demonstrated in responses to COVID-19 all over the world. Communities have been at the forefront of the pandemic response, delivering life-saving and essential medication despite lockdowns and supply chain disruptions, ensuring food supplies, offering psycho-social support and housing and developing public-information campaigns. Community-led health systems are dynamic, have demonstrated ability to deliver integrated programs across disease areas, and can reach the most marginalised and vulnerable. 

A global survey by UHC2030 and the Civil Society Engagement Mechanism (CSEM) has found that many governments are making decisions without the meaningful engagement of community, people with lived experiences and civil society representatives. Without due consultation of this health expertise, including social and behavioural research and qualitative health data, national response plans will be incomplete and will inadequately reflect the pandemic’s disproportionate impacts on marginalised and at-risk populations. Moreover, the shrinking of civil society space, the persistence of laws that criminalise exposure and transmission of communicable disease, and the disproportionate use of criminal laws and regulations against key and vulnerable populations during COVID-19, all seriously threaten the attainment of the global health goals. 

We know from decades of experience that excluding civil society and community engagement from health approaches results in failure. To be effective, universal health coverage and epidemic preparedness strategies must be based on diverse and multi-sectoral systems for health that integrate and resource community responses as an essential component, rather than an ‘optional extra’. These strategies need to be person-centred and decentralised, addressing all the health needs of the community, especially when targeting communities underserved by current health systems. 

We warmly welcome the Global Fund’s commitment to reinforce systems for health by supporting urgent enhancements to community-led response systems, as part of the four-pronged response to the COVID-19 pandemic. In the 2017-2019 allocation cycle, the Global Fund invested more than US$100 million in community systems strengthening. We urge you to safeguard and build further on this strategic investment that has built resilience and sustainability, making a huge difference in the ability of communities to respond to COVID-19.

We therefore call on the Global Fund to:

  • Prioritise and proactively support community-led and person-centred health initiatives as a crucial component of Resilient and Sustainable Systems for Health
  • Ensure the active and meaningful engagement of civil society, communities and people with lived experiences at every stage of the design and implementation of universal health coverage and COVID-19 response
  • Invest in strong, locally community-driven UHC monitoring and accountability mechanisms at district and national level
  • Invest in robust public health data mechanisms that monitor accurately the response and can provide information about which communities need greater attention and enhanced access to services so that they are not left behind
  • Increase dialogue and initiatives supporting governments to ensure all UHC legislation is rights-based and inclusive, and where necessary reform and repeal laws that criminalise communicable disease

Sincerely,

Georgina Caswell, Head of Programmes, Global Network of People Living with HIV (GNP+)

Victoria Grandsoult, Executive Director a.i., UNITE Global Network of Parliamentarians to End Infectious Diseases

Cary James, Chief Executive Officer, World Hepatitis Alliance

Nina Renshaw, Policy and Advocacy Director, NCD Alliance 

Lucy Stackpool-Moore, Director, HIV Programmes and Advocacy, International AIDS Society (IAS)

Contact: Georgina Caswell, email – gcaswell@gnpplus.net

Australia: “Coercive responses like forced testing and detention should only ever be a last resort”, if at all

Forced testing a last resort

With the COVID-19 pandemic persisting for much longer than expected, particularly in Victoria where rolling lockdowns have affected us all, it’s understandable that there might be calls for legislative reform. But I was saddened to read a call for implementation of widespread coercive testing under the Public Health and Wellbeing Act 2008 (PHW Act) (“Flattening the curve – Why the law should allow for compulsory testing in a pandemic”, LIJ October 2020).

Threats to public health do sometimes require drastic measures, but where human rights are impacted, the legal profession should be the first to question whether such measures are proportional and justified. Existing provisions within the PHW Act allow for testing orders in strictly limited circumstances – as is appropriate given the extreme intrusion into human rights
that those orders can represent. The history of the response to HIV in Australia has frequently seen calls for curtailment of individual rights in the pursuit of the public good, and the current PHW Act was developed in part through consultation with the HIV-affected community. Notwithstanding that, there are powers to detain and test people in the Act and, while rarely used, they can be highly coercive.

The case of Lam Kuoth is an example. Accused of placing a woman at risk of HIV, Mr Kuoth, a young Sudanese man, was placed in public health detention for almost 16 months before his trial. On appeal, the Court of Appeal accepted that that period “amount[ed] to a term of imprisonment”1 in a matter where, ultimately, only a community- based order was imposed.

There is a well-developed international discourse about the most effective ways to protect the health of communities while also safeguarding rights. The Ottawa Charter for Health Promotion is globally recognised as a foundational document.2 The Charter sets out a framework of developing healthy public policy, creating supportive environments, and empowering and educating individuals, as the foundation to effective public health responses.

Victorians have been tested in huge numbers (more than 2.8 million tests). Our second wave wasn’t due to low testing, but emerged from outbreaks in workplaces – aged-care homes, abattoirs, and quarantine hotels – where low-paid workers, often with limited education and training, have been on the frontline of the pandemic. Better safeguards for their health and employment would have limited or prevented those outbreaks without the need for forced testing. Coercive responses like forced testing and detention should only ever be a last resort, if they are used at all. 

Paul Kidd, director, HIV Justice Network (Amsterdam), lawyer, Fitzroy Legal Service.

1. Kuoth v TheQueen[2010]VSCA103.
2. World Health Organisation,The Ottawa Charter for Health Promotion (21 November 1986) http://www.who.int/healthpromotion/ conferences/previous/ottawa/en/.

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

Uzbekistan: While people with HIV are still criminalised, there is hope for change with the the country’s entry into the UN Human Rights Council

Punishment for illness: why HIV is still a crime in Uzbekistan

Google translation. For article in Russian, please go to: https://uz.sputniknews.ru/analytics/20201028/15275804/Nakazanie-za-bolezn-pochemu-VICh-v-Uzbekistane-do-sikh-por-prestuplenie.html

Unfortunately, people living with HIV in Uzbekistan are victims of a discriminatory legal system. But there is hope that with the country’s entry into the UN Human Rights Council, the situation with obsolete norms will begin to change.

 

TASHKENT, October 28 – Sputnik, Anna Zhelikhovskaya. Shortly before the introduction of quarantine in Tashkent, an investigation began on the case of 52-year-old Natalya (name has been changed. – Editor’s note), a single mother who works as a hairdresser and colourist. The woman is a professional master all-rounder with over 20 years of experience in this field. She was charged under article 113, part 4 of the Criminal Code of the Republic of Uzbekistan “The spread of a venereal disease or HIV infection / AIDS” – knowingly endangering or getting infected with HIV / AIDS.  

Positive result

In 2014, the List of professional activities prohibited for persons infected with the human immunodeficiency virus was updated. It included, in particular, the profession of a hairdresser associated with cutting and shaving. Natalya’s story began in 2017, when the director of the beauty salon where she worked sent employees to undergo, as it turned out, mandatory HIV testing.   

“My test turned out to be positive. I realised that it was impossible, and retaken the analysis. I don’t know how I got through these days of waiting … The answer was again yes. The first thing I experienced was shock. Before that, I did not know anything about this disease I never came across him. Of course, the doctors talked to me, I registered at the Tashkent City AIDS Center, leaving all my data there, “the woman recalls.

She immediately started taking antiretroviral therapy (ART). This specific treatment helps patients block the virus, which means they do not put others at risk, live a full life, have a family and healthy children. For the next two years, she continued to work in the service industry, realising every day that management should know about her illness. Natalya explained the lack of a certificate to the director by the fact that she could not pay for the test at the moment.

“With the best of intentions, of course, he called the SES and asked if I could still not take the test, since I’m not a beautician, I don’t do tattoos and make-up, neither do manicure. I work with paints and cut my hair, mainly with a machine. replied that in this case, the test can not be taken, “- says the woman.

According to her, she did not report the test results to the director because she was afraid of losing her job. Raising a teenage child alone, a woman treasured her only source of income. In addition, Natalia had already learned enough about her illness and understood that with an undetectable viral load (the amount of virus in the blood), she was safe for others.

“Of course, I do not justify myself in any way. I had to report everything to the management and leave the profession. But I was scared, I was lost and did not understand what to do next, how to live now …”

In March 2020, a few days before quarantine, police officers came to the beauty salon with a purposeful check. According to the woman, one of them took her into a separate room and said that with such a diagnosis she was not allowed to work as a hairdresser. It was explained to Natalia’s colleagues and her management that the problem was in the medical book. At the same time, according to her, one of them reassured her, assuring her that there would be no trial, and she would limit herself only to a fine. However, an investigation soon began and the first court hearing was scheduled. Before the trial began, none of her colleagues and the director knew about the real reason for the audit.

“In a conversation with an operative, a doctor in the AIDS center, in the makhalla committee indirectly, not directly, but it was felt that I was suspected of indecent behaviour. To say that I was mentally and psychologically crushed is to say nothing. I am a believer, I walk to the church. For the trial, even my positive characteristics were provided from there, “recalls Natalya.

Today in the minds of people there is still a deep conviction that this is a disease of the marginalised. And if a woman has it revealed, then she will certainly receive the stigma of the fallen. Antiquated HIV legislation also hinders the fight against this stigma.

A new look at old laws

Uzbekistan’s Criminal Code was approved in 1994, and article 113 has its roots in the 1980s. Then the diagnosis was really a sentence, there was no treatment or diagnosis, and criminal prosecution was considered almost the only type of prevention. Several years ago, the World Health Organization officially recognised HIV as a chronic, not fatal, disease. People who regularly take therapy live long and healthy lives. Therefore, the list of permitted professions and the justice system for positive ones should be revised.

“To date, not only has the status of the disease changed, but there is also a lot of data that make it possible to unequivocally assert that criminal prosecution does not prevent the spread of the virus in any way. The existence of criminal liability for endangering and transmitting HIV, on the contrary, leads to the fact that people who practice risky behaviour, avoid testing. After all, while they do not know about their status, they are not subject to responsibility, “says lawyer Timur Abdullaev.

Natalia’s public defender at the trial was Evgenia Korotkova, coordinator of the Positive Women program “Ishonch va hayot”. She says that they monitored the list of prohibited professions for people with HIV in the CIS countries, and nowhere is the profession of a hairdresser.

“At the very first court session, we petitioned for the appointment of a forensic medical examination with the involvement of an experienced infectious disease expert working with HIV. The investigation established that the accused had zero viral load. danger. The indictment states that in order to prevent infection of third parties, she did not work with cutting tools, but used a typewriter. That is, by her actions, she tried to protect clients from HIV transmission, “says Evgenia.

In world medicine, the thesis “Undetectable = Untransmittable” (the principle “U = U”) has been finally proved. Experts and legislators of Uzbekistan have more than 10 years of their own observations and statistics, confirming international data. This already allows us to revise the list of prohibited professions for people with HIV, the relevant law and decriminalise Article 113.

You can already start by looking at the list of prohibited occupations that people with HIV can do.

“Amendments to this list can be achieved if the convict in question does not stop and continues to defend her rights up to the Constitutional Court and the UN Human Rights Committee,” the lawyer said.

According to him, the UN Special Rapporteur on the Right to Health and representatives of other structures of the organisation spoke about the harm of HIV criminalisation, as well as the fact that it violates a number of rights enshrined in international pacts ratified by Uzbekistan. However, so far no action has been taken in this direction.

According to human rights activists, there is a serious flaw in Article 113, which is found in almost all the criminal codes of the Central Asian countries: it contains the word “knowingly”.

“What is” knowingly “and how it relates to intent, the Code itself does not explain. As a result, such a” trifle “becomes a secondary circumstance. Whether intent or not can affect only the severity of punishment, but responsibility does not cancel out. depending on whether a person wanted to infect someone with HIV or not, the article “shines” in any case, “Timur Abdullaev explained.

Usually such inaccuracies in the legislation are eliminated either by bylaws or by Resolutions of the Plenum. But with regard to Art. 113 there is neither one nor the other. There are only Criminal and Criminal Procedure Codes, and everything else is at the discretion of the court. If the judge does not understand what HIV is and how it is transmitted, then the defendant will have a difficult time.

Moreover, even among scientists there is no consensus on whether the presence of intent is mandatory for the onset of responsibility. If so, what should this intent be? After all, it can be direct – “malicious” or indirect.

We need to talk about it

Evgenia also talks about the low level of awareness of representatives of law enforcement agencies and the judiciary about HIV transmission and treatment. She is convinced that to a greater extent this is what influences the sentencing. In her opinion, the application of modern scientific evidence in criminal cases can limit unfair prosecutions and acts of justice.

“When making a diagnosis, doctors do not tell patients about the ‘N = N’ strategy, but take a receipt of criminal responsibility for infecting others with them. Also, activists have difficulty access to the accused, and most lawyers have a prejudiced attitude towards such clients,” the human rights activist adds …

According to the law of Uzbekistan “On the protection of the health of citizens”, the patient has the right not only to keep confidential information about the diagnosis, but also to choose the persons to whom information about the patient’s health can be transferred in the interests of the patient.

Natalia and HIV activists ask themselves: where did the law enforcement agencies get the information about her diagnosis and why did they come to work, inflicting severe moral and psychological damage on the woman? Thus exposing her to the risk of disclosing the diagnosis. At the request of the editorial office, this question was answered at the Republican AIDS Center. We publish the text in full.

The Republican Council for the Coordination of Citizens’ Self-Government, the Committee on Religious Affairs and the Youth Union of Uzbekistan, the Tashkent AIDS Center provided information to the Criminal Investigation Department of the Ministry of Internal Affairs on February 10, 2020 at the request of citizens who are diagnosed with HIV and who work in salons of personal services. At the same time, the center’s specialists ensure the confidentiality of information about people living with HIV and medical secrets in accordance with Article 45 of the Law “On the Protection of Citizens’ Health” dated August 29, 1996, “the letter says. It was not possible to drop the charges against Natalia. But she escaped real imprisonment and received a two-year suspended sentence.

“A large role in our case was played by the competence and interest in the details of the case, as well as in the topic of HIV and the ways of its transmission on the part of the judge and the prosecutor. But this is more a special case than a rule. The judge gave recommendations to lobby for a revision of the list of prohibited professions for HIV – positive, to exclude the position of a hairdresser from it, “says Evgenia Korotkova.

The media should also participate in the formation of a competent public opinion about HIV, but today this topic is almost never raised in the press, and specialised structures do not interact well with journalists. 

Now Natalia has no official job. Several times the makhalla provided her with material assistance, both in connection with the pandemic and with her current situation. But there is no regular, even minimal, earnings.

On October 15, 2020, Uzbekistan adopted a law “On the Rights of Persons with Disabilities.” It lists the basic principles that ensure their rights and protection against discrimination on health grounds. People living with HIV should have similar guarantees. Uzbekistan recently joined the UN Human Rights Council. Perhaps this status will speed up the revision of Article 113 of the Criminal Code. Lawyers are convinced that the punishment should follow exclusively for willful malicious infection or its attempt. Reforms in this area will significantly strengthen the position of the republic in the field of human rights protection.

Jordan: Health professionals mandated to report individual’s HIV status to the government

Foreigners Living with HIV in Jordan Face an Impossible Choice

Government Mandates Reporting HIV Status, Deports People Living with HIV

In Jordan, medical professionals and health facilities are mandated to report an individual’s HIV status to the government. Foreign nationals found to be HIV-positive are summarily deported regardless of the consequences to their health and safety and banned for life from returning.

Earlier this year, an Iraqi gay man living with HIV fled to Jordan to escape persecution he faced at home for being gay, yet he could not access HIV treatment without being immediately deported. When his health rapidly deteriorated, he could not seek medical attention for fear of being deported. Whatever decision he made would threaten his life.

Jordan also obliges nationals to undergo HIV testing when seeking employment in the public sector and for non-nationals obtaining work permits, and denies them jobs if they are HIV-positive. It also requires testing for non-nationals renewing residency permits. For LGBT people living with HIV, the stigma and discrimination by medical professionals and employers often bars them from accessing basic rights, without any legal recourse.

Abdallah Hanatleh, executive director of “Sawaed,” an Amman-based organization that facilitates access to HIV treatment, told Human Rights Watch that his organization documents dozens of deportations based on HIV status annually.

Jordan is not alone in this abusive practice. Gulf states including Saudi Arabia and the United Arab Emirates also deport people found to be HIV-positive without any provision for continuity of care. Worse yet, in Jordan, as in Saudi Arabia and the UAE, HIV-positive foreign nationals in the criminal justice system are denied adequate access to treatment in prison. “They are placed in solitary confinement, further isolating and stigmatizing them,” Hanatleh said.

International law prohibits deportations based solely on HIV status. Jordan should explicitly ban discrimination based on HIV status and stop deporting HIV-positive individuals under the principle of non-refoulement. This principle applies to asylum seekers and refugees, and for people with HIV, it means that governments are prohibited from returning them — depending on how advanced the disease — to places where they do not have adequate access to medical care and social support, or where they risk being subjected to persecution or degrading treatment on account of their HIV status.

Jordan should not mandate reporting of HIV status and employers should not be requiring HIV testing in the first place. People living with HIV should never be forced to forego lifesaving treatment in order to avoid deportation to danger.

US: To end the HIV epidemic in Nevada, laws must be based on science, not stigma and fear

Nevada’s criminalization of HIV must stop now
By Andre C Wade

According to the Center for HIV Law & Policy, 32 states have laws that criminalize behavior of people living with HIV. Nevada is one of those states. In 1993, the U.S. was grappling with HIV — how to treat it and people living with it, how to protect those not living with it — and sought to criminalize behavior of those living with it as a way to remove them from society, in a misguided attempt to decrease transmission of the virus.

During this time of heightened fear and homophobia, when we knew little about HIV, there was a concern about the knowing and intentional transmission and exposure of HIV from one person to the another. This was a concern brought up during the 1993 Nevada Legislature when discussing Senate Bill 514, which prohibits certain conduct through which human immunodeficiency virus may be transmitted after testing positive for disease. One of the villains during the session was Dr. Paul Cameron, who at the time was the Director of the Family Research Institute. The Institute’s mission was to denounce homosexuality and pathologize gay people.

Through his testimony, he likened gay people to serial killers, helping to secure passage of the bill, which stigmatized and criminalized people living with HIV for decades to come. The bill set in motion the penalty of imprisonment for up to 20 years, a fine up to $10,000, or both, for intentionally, knowingly, or willfully engaging in conduct in a manner that is likely to transmit AIDS (which should be HIV as AIDS is not transmittable).  It should be noted that in the early 1980s, the American Psychological Association discontinued Cameron’s membership for his unethical practices as did many psychological and sociological associations at the time.

Currently, in Nevada — thanks in part to Cameron’s homophobic misinformation — it is a Class B felony for a person living with HIV and who knows their status, to intentionally engage in behavior that could transmit the virus to someone else. Public health experts agree that criminalizing a health condition is not a smart strategy for preventing its transmission, but the most egregious part of Nevada’s law is that to be legally liable, the prosecutors don’t actually have to show that there was any risk of transmission or any intent to transmit the virus.

Rather, anyone living with HIV who engages in certain behaviors — regardless of whether they are detectable and transmittable, regardless of preventative measures like condom use or their HIV-negative partner taking PrEP, regardless of the outcome — can be convicted of intentionally transmitting the virus, according to Nevada’s outdated
and harmful law.

Nevada law further complicates the situation by failing to fully define any and all behaviors that could likely transmit HIV — including behaviors such as spitting and biting that public  health experts now agree pose no risk of transmission. Back in the 1980s and 1990s, these behaviors were thought to “likely transmit” HIV, which in 2020 we know is medically and scientifically impossible. Yet, these behaviors are still included in Nevada’s law and could still lead to a conviction. It’s a felony conviction if someone is charged with transmitting the virus to someone else (even if transmission doesn’t occur and even if there wasn’t intent). With other communicable diseases, the charge is a misdemeanor. So, sadly and inappropriately, an incident involving HIV would add a sentence enhancement to a felony.

As it stands, our HIV criminal laws in Nevada are based on stigma and fear, rather than modern science. They don’t take into account the fact that a person living with HIV, today, can take medication to reduce their viral load — the amount of virus present in their body — to an undetectable level, in which case there is no risk of transmission. Our laws are even more out of step given medical advancements via medications taken by HIV-negative people to prevent transmission known as PrEP (Pre-exposure prophylaxis) and PEP (Post-exposure prophylaxis).

It’s time to modernize our HIV laws in Nevada. Sen. David Parks, and the Nevada HIV Modernization Coalition, the Human Rights Campaign and Silver State Equality, amongst others agree. At the national level, the Department of Justice and the Center for Disease Control, the Center for HIV Law and Policy and The Elizabeth Taylor Foundation, to name a few, have called for the repeal or modernization of laws that criminalize HIV.

In 2019, Sen. Parks passed Senate Bill 284 that created a governor-appointed Advisory Task Force on HIV Exposure Criminalization for the state. The task force is charged with, in part, submitting a report that reviews and evaluates current statutes that criminalize exposure to HIV; identifies disparities in arrests, prosecutions and convictions under the statutes; evaluates current medical and scientific research regarding HIV transmission; and looks at what’s happening in other states regarding the modernization of HIV laws.

The Williams Institute is conducting research in Nevada as it has done in California, Florida, Georgia and Missouri to look at disparities in arrests, prosecutions and convictions.

Their current findings in other states are that these laws disproportionately impact Black and Latinx people, LGBTQ+ people, women, sex workers and young people, including minors. These are individuals who are interacting with the criminal justice system, often for the first time and when they otherwise would not have. In Missouri, the Williams Institute has found, that HIV criminalization has cost the state nearly $18 million.

Sadly, the criminalization of HIV undermines the work of public health officials charged with ending the epidemic.

When states and local jurisdictions create and implement plans for ending HIV, often they engage those living with HIV to develop a plausible plan of action.

But our laws are criminalizing those who are supposed to be engaged in plans to end HIV, thereby decreasing the likelihood that they will be able and willing to participate in a meaningful way.

Additionally, the criminalization of HIV further stigmatizes people living with HIV, which can affect overall mental health and well-being, cause someone to not disclose their status to a health care provider or to their partner, or discourage them from accessing health care altogether. Stigmatizing HIV causes people to not want to get tested in the first place, thereby decreasing the chances they will know their status.

HIV is not a crime. Here in Nevada, we need to repeal harmful statutes, reduce sentence enhancements and move some statutes from criminal codes to public health codes. Modernizing our laws based on science and what we know about our laws’ harmful impacts will help Nevada end the epidemic in the state.

André C. Wade is the state director, for Silver State Equality. He is also the chairman for the Advisory Task Force on HIV Modernization for the state of Nevada.

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.

 

 

 

Uganda: HIV activists ask government to review the HIV/AIDS law and remove clauses that criminalise HIV

Activists, chief justice call for review of HIV/AIDS law

By Betty Amamukirori, John Masaba

The majority of the HIV-positive persons are living in fear of the law and many choose not to disclose their status.

HIV/AIDS activists have asked the Government to review the HIV and AIDS Prevention and Control Act 2014, saying it is fuelling stigma and discrimination.

The activists, while speaking at the Philly Bongole Lutaaya memorial lecture, said the law has clauses in it that if left unchanged could undo the country’s gains in the fight against the disease.

Dora Musinguzi, the executive director of Uganda Network on Law and Ethics (UGANET), said clauses that criminalise HIV, especially intentional transmission are causing more harm because it’s scaring people away from testing, disclosing their status to the spouses or seeking treatment.

She pointed out clauses such as sections 41 and 43 which spell out punishments for attempted transmission of HIV and intentional transmission, respectively.

“We need to do everything it takes to repeal this law, especially the punishment for exposure to HIV/AIDS. We need to remove the criminalisation under the law because it is causing more harm,” Musinguzi said.

The activists said the majority of the HIV-positive persons are living in fear of the law and many choose not to disclose their status to their significant others for fear of prosecution. This, they said, has fuelled self-stigma.

Justice Alfonse Owiny-Dollo, in his keynote address as the guest speaker, agreed that the law needs to be amended if Uganda is to achieve its goal of ending the AIDS epidemic by 2030. His address was read by the Judiciary’s Chief Registrar, Sarah Langa.

Owiny-Dollo called on Parliament to enact and review laws that will improve the wellbeing of the society especially the people living with HIV.

“The HIV and AIDS Prevention and Control Act 2014 may need to be reviewed,” he said.

“Ending HIV requires enabling legal and social environments that guarantee the health, dignity and security of all people living with or at risk of HIV. This is the only way to ensure that all those in need of HIV prevention, treatment, care, and support have access to these services without fear of discrimination, exclusion or bias,” Owiny-Dollo said.

He said much as there are enabling laws on non-discrimination on the basis of one’s HIV status, the HIV-positive still face limitations when seeking justice. These include lengthy proceedings and an unfriendly court environment.

The lecture was held under the theme Access to HIV services during COVID-19 pandemic. It was held at the Office of the President auditorium and was notably attended by the late Lutaaya’s children, friends, activists, musicians living with HIV. The HIV prevalence is 6.2% amongst adults aged 15-64 years; 7.6% in women and 4.7% in men.

Tezra Lutaaya, a daughter of the deceased, said although her father championed the fight against the disease, stigma and discrimination against HIV-positive persons is still rife.

“I strongly believe that an end to HIV is in sight if we continue to fight stigma, make sure seamless information and access to all interventions are available and that we continue to have dialogue with the young people both infected and affected by HIV,” she said.

Esther Mbayo, the Minister for the Presidency, said if AIDS is to be ended by 2030, there is need to exhibit the spirit of Philly Lutaaya.

“We need to get out of our comfort zones, especially now that we are dealing with two pandemics — HIV and COVID-19. On an individual level, we need to test for HIV with our partners and together irrespective of the results, decide to prevent HIV,” she noted.

She called for deliberate efforts to reach those at most risk of getting infected with HIV in order to reduce the high HIV prevalence and towards ending stigma and discrimination.

Owiny-Dollo urged the Government to prioritise creating awareness, promoting advocacy that reaches the young people and all generations with messages on HIV and AIDS.

Canada: HIV Legal Network publishes new guide to assist journalists in reporting responsibly about HIV criminalisation cases

Media Reporting: HIV and the Criminal Law

This guide is an evidence-based resource to assist journalists in Canada in reporting responsibly and accurately about alleged HIV non-disclosure and resulting criminal cases.

People living with HIV in Canada can be prosecuted for “aggravated sexual assault” (one of the most serious charges in the Criminal Code) if they don’t tell their sexual partners, in advance of intimate contact, that they have HIV. The criminalization of “HIV non-disclosure” is severe and rooted in stigma: people face charges even in cases where there is little or no risk of transmitting HIV. The maximum penalty is life imprisonment, and a conviction carries with it a mandatory designation as a sex offender. This approach has been criticized, both domestically and internationally, as being contrary to human rights and principles of public health, including by United Nations experts. Instead of reducing HIV transmission, HIV criminalization is now recognized by many experts as a driver of the epidemic.

There have been dramatic advances in treating and preventing HIV, which have resulted in a gradual change in public discourse and understanding. But there’s still a lot of misinformation. Media can play a vital role by modernizing the discussions we’re having about HIV and by reporting about HIV non-disclosure in an evidence-based and responsible way that doesn’t perpetuate stigma.

The guide is available in English and in French

UK: National AIDS Trust responds to misinformation presented in the case of woman accused of using bloodied clothes as a weapon

National AIDS Trust reacts to Newtown HIV threat court case

THE National AIDS Trust has moved to quell fears that anyone could contract HIV via bloodied clothing after a woman was fined for threatening to infect a police officer in Newtown last week.

This week C. pleaded guilty to assaulting an emergency worker when she appeared at Welshpool Magistrates Court.

The 35-year-old was brought in to custody at Newtown Police Station on August 26 covered in blood – which she claimed belonged to someone else – and became abusive, eventually stripping and throwing the bloodied clothes at custody sergeant Grace Coburn, telling her the clothes had hepatitis and HIV on them.

Sgt Coburn was told by C. that she probably also “had Covid as well”.

But the trust – the UK charity dedicated to transforming society’s response to HIV – has responded to the “misinformation” presented by the case, moving to reassure people that HIV cannot be transmitted in this way.

Danny Beales, head of policy and campaigns at the National AIDS Trust, said: “It’s disappointing to read that HIV is still being used as a threat in 2020.

“The stigma and misinformation that surrounds HIV mean that cases like this are far too common. We would reassure readers that there is no risk from HIV on bloodied clothing as the virus is very fragile and does not last long outside the body.

“Also, the majority of people living with HIV in the UK are on effective treatment which means they cannot pass on the virus in any way.”

C. was given a £200 fine and will pay compensation of £50 to the officer. She will also pay £85 costs.

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