AGENDA 5 UPDATE ON ACTIONS TO REDUCE STIGMA AND DISCRIMINATION IN ALL ITS FORMS
Presentation by Laurel Sprague, Executive Director, The Global Network of People Living with HIV (GNP+)
Thank you, Honourable Chair, Luisa, UNAIDS, and distinguished members of the PCB for creating this space within the agenda for a voice from the community of people living with HIV. As a researcher and advocate in the field of HIV stigma and discrimination, I welcome this opportunity to share some brief reflections on the current state of the stigma and discrimination response — as well as the actions that people living with HIV and our allies take to disrupt and resist systems of violence and prejudice that we face.
First, please appreciate with me this photo taken last week at ICASA, most of those pictured are members of the Y+ Network of young people living with HIV. It is the young people who are truly leading the way with their commitment and energy for a more just world with space for them to flourish.
Looking at a few key areas for HIV stigma and discrimination research and interventions, there are areas where we have made much progress and areas where a great deal is yet to be done.
In terms of measuring and responding to internalized stigma, experienced stigma and discrimination, and stigma in health settings, we are able to do a great deal. With proper resourcing, we could have a tremendous impact. Discrimination in the law, in faith settings, and in education, employment, housing, and other structural conditions, receive some monitoring and advocacy by communities and could be scaled up.
However, our knowledge and responsiveness lag behind for children and youth and for people living at the intersection of HIV and other key population status, including sex workers, people who use drugs, gay men and other men who have sex with men, and transgender people and require urgent attention.
You may note the PLHIV Stigma Index shows up as the main, and often only, resource for measuring and responding to many of the areas of prejudice on this list.
I would like next to give a brief update and some current findings from the PLHIV Stigma Index.
The Stigma Index is a joint initiative, governed by the International Partnership of GNP+, ICW, and UNAIDS. It is a questionnaire-based methodology implemented by people living with HIV among people living with HIV.
The project builds the local capacity of PLHIV networks in countries to conduct research by, for, and with their own communities, and use the results for advocacy — while building partnerships with government ministries, academic institutions, and other NGOs.
Since 2008, over 100,000 PLHIV from more than 90 countries have been interviewed, with translation into more than 50 languages, and more than 2000 PLHIV trained as interviewers.
Recently, the Stigma Index has undergone a revision process, supported by USAID and PEPFAR, to better measure access and barriers to testing and treatment and experiences of key populations living with HIV.
The revised survey is available now. We urge countries to support national networks to conduct implementations and gather data that can guide anti-stigma interventions.
The next few slides will give a snapshot of results from the pilot studies of the revised Stigma Index in Cameroon, Senegal, and Uganda.
This slide shows that, in the last year, more that 60% of people surveyed felt they had to hide their HIV status and more than 20% felt worthless, ashamed, or guilty because they were living with HIV.
Here we see that 23-41% of respondents had hesitated to get tested for HIV because of stigma and 21-28% delayed accessing care because of stigma.
The experiences reported by key populations living with HIV should give us all pause:
14-36% reported they had been physically harassed; 14-44% reported the experience of blackmail; and 29-41% reported sexual assaults.
Stigma toward key populations is a barrier to seeking healthcare: 12-47% of gay men and sex workers indicated fear to seek healthcare; and 8-42% reported avoiding healthcare that they needed.
We have similar concerns from other community studies, including the Values and Preferences survey that WHO conducted together with women living with HIV that formed the basis for the newly released SRHR and HIV guidelines.
Among other results, women reported high rates of experienced violence both before and after their diagnosis. In health settings, 6% women living with HIV reported experiences of violence before their diagnosis shooting up to 53% after diagnosis.
Violence took forms from verbal abuse and physical neglect to conditional access to services to reports of forced or coerced abortion or sterilisation.
Another area of work against discrimination is the monitoring of and advocacy against HIV criminalisation. 69 countries criminalize PLHIV for HIV exposure despite UNAIDS, scientific, and legal expert guidelines that call for an end to these prosecutions and despite evidence that criminalisation does nothing to reduce new infections.
These laws as practiced lead to arbitrary harassment by police, impunity for perpetrators of intimate partner violence against people living with HIV, and interfere with the patient/provider relationship and the ability of PLHIV to trust courts and seek justice for discrimination.
The number of prosecutions appears to be increasing. This chart from the HIV Justice Network shows 228 reported prosecutions in the past two years in 39 countries — compared to 28 countries in the previous 2 years. The top countries by proportion of prosecutions per person living with HIV are in red, orange, yellow, and green, with the US overall, Belarus, Russia, and Canada prosecuting the highest proportion of PLHIV and a significant rise in prosecutions in Zimbabwe and Czech Republic.
Activism by PLHIV against HIV criminalisation in Canada, one of the world’s capitals for HIV criminalisation, and by young PLHIV in protest of the Uganda HIV bill.
What action is needed?
- Keep attention focused on HIV-related stigma and discrimination
- Include HIV stigma and discrimination indicators in all HIV prevention, treatment, and intervention research
- Resource PLHIV and other key population networks to address HIV-related stigma and discrimination
- Fund testing and validation of indicators and interventions in and beyond healthcare settings
- Institutions, systems, and structures
- Ensure full and equal access to education, employment, housing, and justice and fund recourse mechanisms
- Commit to the meaningful engagement of PLHIV and key population communities in all stages of the research and interventions
- PLHIV and key populations have to be resilient. We need YOUR resilience, too. Political leaders, decision-makers, and researchers need to stay the course.
Initiatives like the one to be proposed by the NGO Delegation can significantly move the response to end stigma and discrimination forward.
By the Elizabeth Glaser Pediatric AIDS Foundation (EGPAF)
The Elizabeth Glaser Pediatric AIDS Foundation would like to thank UNAIDS for its report on actions to reduce stigma and discrimination. We appreciate the numerous activities by UNAIDS and co-sponsors to reduce stigma experienced by a broad range of populations, including women and young people. We were particularly pleased to see the lengthy treatment of gender-based discrimination and violence, which create multiple barriers for prevention and treatment of HIV among young women and adolescent girls.
At the same time, we are concerned by the lack of information on efforts to tackle stigma specifically affecting children more broadly, and of all ages. UNAIDS has previously recognized that children, especially younger children, are doubly penalized by stigma. They experience it both directly from peers, teachers, and even family members, and indirectly via the adults they rely on for access to testing, treatment, and care.
Yet beyond the discussion on gender-based discrimination and violence, the report only refers to stigma affecting children very briefly, and mainly in the context of education. Reported undertakings to address such stigma are limited to inclusion of HIV-related stigma in comprehensive sexuality education, which doesn’t affect educators themselves or the broader community.
What the report doesn’t mention is that for many children and adolescents living with HIV, stigma can also be a major barrier to testing, treatment, adherence, and retention in care. It may prevent infants from getting tested if their caregiver is too afraid of the reaction of family members or the community to bring them for EID. It may prevent caregivers from bringing children back to the clinic month after month if they fear the questions about why they must miss work or the child miss school. It may lead school children to being teased, harassed, rejected, and excluded if it becomes known that they, or even their caregiver, are living with HIV. And it may lead some adolescents to take the life-threatening decision to throw away their pills rather than be seen taking them, especially if they are in boarding school where it’s harder to take them discretely.
We have all heard such stories, but as Laurel mentioned this morning, what we’re missing is a systematic collection of data to inform advocacy and programs. This is why last year the PCB decided to “further collect and assess data on the effects of stigma and discrimination on children, adolescents, and young people living with HIV as a barrier in accessing prevention, treatment, care and support; to strengthen support to countries … to eradicate stigma and discrimination against children, adolescents, and young people living with HIV, including through education and HIV prevention in and out of schools;… and to provide progress reports to the PCB on … eliminating such stigma and discrimination.”
So we end, Mr. Chair, by asking UNAIDS to quickly implement the decision points from these 39th PCB so we can have both better data and the beginnings of a better response for children.
We would also like to strongly support the NGO Delegation’s proposal for a global compact to eliminate stigma in all its forms, and would like propose that it to devote some of its attention to the particular issues affecting children of all ages.
By Men Who Have Sex With Men Global Forum (MSM-GF)
Honorable chair, excellencies, community colleagues, Michel Sidibé, thank you for this opportunity to address the UNAIDS PCB.
My name is George Ayala and I proudly serve as the Executive Director of the Global Forum on MSM & HIV.
The Global Forum on MSM & HIV routinely gathers information from gay men and other men who have sex with men about their experiences accessing and utilizing health services. Over the past 7 years, we have surveyed nearly 30,000 men from across 120 countries. While we have documented incremental and positive changes in HIV service utilization, men have consistently reported serious challenges accessing basic HIV prevention and treatment related to their often-harsh experiences of homophobia and stigma.
When we add the countless examples of police harassment or brutality, landlord evictions, humiliation, blackmail, and extortion from co-workers, and physical and sexual violence toward men thought to be homosexual – it isn’t difficult to understand how HIV comes to be concentrated in gay men and other men who have sex with men worldwide.
These experiences extend into healthcare settings. Sadly, non-consensual medical procedures, including anal examinations, conversation therapy, forced sterilization, genital mutilation, are still common and represent heinous assaults on our human rights. These practices and other discriminatory behaviors only serve to dissuade gay men and other men who have sex with men from accessing HIV services. The extent to which health care providers continue to shame, humiliate, chastise, or mistreat men who have sex with men, is the degree to which men who have sex with men will avoid prevention, care, and treatment services.
The Global Forum on MSM & HIV has learned a great deal about the barriers to HIV service for gay men and other men who have sex with men. For example:
- Provider discrimination significantly decreases the odds of being linked to care and being virologically suppressed; and
- Men reporting experiences of homophobia are much less likely to be virally suppressed.
Conversely, we know that HIV-negative men who report higher engagement with gay community are:
- 1 and a half times more likely to get HIV tested and receive the results;
- 2 and a half times more likely to report ever using PrEP; and
- 3 and a half times more likely to participate in HIV prevention programs.
Importantly, men are 19 times more likely to participate in prevention programs when they accessed those services from community-based organizations led by or serving lesbian, gay, bisexual and transgender people. The importance of community-led services cannot be over-emphasized.
Discrimination towards gay men and other men who have sex with men in healthcare settings is a barrier that can be effectively addressed. Programs in Brazil, Canada, Kenya, South Africa, and the U.S. have sought to include sensitization training in medical and nursing school curricula. These efforts and initiatives like them bring us hope.
Creating an enabling environment for community-based organizations to offer services and requiring sensitization trainings for healthcare providers are critical to facilitating easy access to and greater uptake of HIV services. But this requires that we openly acknowledge and actively challenge homophobia as the single biggest threat to ensuring health as a right for gay men and other men who have sex with men.
AGENDA 6 UPDATE ON HIV IN PRISONS AND OTHER CLOSED SETTINGS
By SRHR Africa Trust (SAT)
I speak on behalf of the SRHR Africa Trust (SAT).
I wish to respond to an underemphasised issue of those left behind within those left behind – adolescent prisoners in eastern and southern Africa.
In sub-Saharan Africa we incarcerate some 700,000 people. Adolescents – juveniles in the lingo of prisons, but let’s call them teenagers – make up between 0.5% – 5%.
Those who work in prisons in our region can tell you on average how long it takes from the entry of a teenager into a prison for: them to be raped; for them to be forced to experience drugs; or for them to become mentored into a possible life of crime. Teenagers are often incarcerated with adult prisoners and are always at overwhelming risk of sexual and other abuse by both prisoners and prison staff.
Mr Chairman, conditions in many of our prisons mirror those of the 19th century. Prisons are anywhere between 120% and 345% overcrowded. Teenagers can go for two or more days with no food. Health services are more absent than present and it is very rare that HIV or TB testing, much less HIV antiretroviral treatment, is provided to teenagers. Even were ART to be provided, without additional nutritional support to malnourished teenagers, treatment success would be significantly affected.
TB is rife and the rise of XDR TB in our region raises the public health risk enormously. The issue of injecting drug use among prisoners in Africa has been largely overlooked compared to other regions.
- Teenagers in prison need to be tracked, via unique identifiers, on a set of key health indictors that integrates HIV with other health issues key to childhood development
- Teenagers in prison need access to testing, same day access to treatment, and access to viral load monitoring & differentiated care
- Teenagers in prison need access to PreP
But of course the best programming for HIV for teenagers in prison is to keep teenagers out of prison.
To do this:
- We need to fight for close-in-age laws that de-criminalize consensual sex between teenagers
- We need to change sentencing guidelines and train judiciaries
- We need to put the full force of political leadership behind amnesties that release children from jails and rehabilitate them to childhood
- We need comprehensive reform of juvenile justice systems; reforms that will drag systems out of the 19th century and into the 21st (In this room we recognize Malawi for its commitment to lead in southern Africa on juvenile justice and prions reforms).
Yesterday Madame Ruth Dreifuss spoke of a global addiction to punishing people who use drugs. In Southern Africa we have an addition to putting people into prison in large numbers, and we have no compunction in including children in these numbers. Let us recognize that for juveniles in conflict with the law, HIV prevention means preventing our children from entering prisons in the first place.
What the Joint Programme needs is better collaboration with its co-sponsors; better collaboration between one United Nations and civil society; and better collaboration between progressive organisations and cross-sectoral collaborations in governments, and across governments.
Mr Chairman, as I sit here Facebook has more information on me, and possibly on most people in this room, than any prison service in my region has on any teenager incarcerated by them. We have to work quicker, smarter and better; to embrace software, hardware, big data and the global data revolution.
Arundhati Roy says that ‘There’s really no such thing as the ‘voiceless’. There are only the deliberately silenced, or the preferably unheard.’ Let us commit together that adolescents in prison be seen, be heard, and be helped & be healthy.
By Action Against AIDS Germany
Ladies and gentlemen,
It is a great honour for me to speak here!
The report addresses many aspects, that I experienced myself, doing my work as a counsellor for prisoners living with HIV in Munich, Germany: stigma, lack of services and funding, lack of continuity of care, criminalization of drug use, overcrowding etc.
Congratulation for the report!
However, some of the underlying structural problems remain untouched
We often hear that prison health is public health. This is wishful thinking and not the reality in most of our countries! (And the older I am, the more tired I get, listing to fairy tales).
One of the main structural problems relates to the stewardship of prison health. The responsibility for the health of prisoners is in many countries with the Ministry of Justice or Interior, instead of the Ministry of Health (MOH) (where it belongs to and where I would assume to find health related expertise).
The MOH has very often not much to say when it comes to health in prison. This leads to double standards, separated or dual systems, lack of cooperation and lack of reporting about health related data. Prisons are isolated places.
Cooperation for NGOs is often difficult, if not impossible. For us as community members, the real “hard-to-reach” populations in prison are often not the prisoners but the prison health authorities.
It doesn’t happen very often – that the ministries I mentioned talk with one another about what matters here. This should be changed and UNAIDS could play an important role to bring the different stake holders together and start a discussion. In our discussion on prison health today, there are probably not many representatives from Ministries of Justice in the room or even aware of the discussion taking place. This could be easily changed when we gather in 2020 again to address this topic – as it is suggested.
Another aspect I want to highlight relates to overcrowding in prison and the way prisons are designed – in many cases old building, small rooms, no fresh air, lack of ventilation and lack of sunlight:
This turns prisons into a breeding ground for Tuberculosis.
There are studies that correlate the time of imprisonment with the likelihood to get infected with TB.
These underlying structural factors should be addressed. Health must not be part of the punishment prisoners face! Prisoners have a right to live in a safe and healthy environment. Governments have a responsibility to safeguard the health of their citizens.
Let me mention one good example from South Africa: All prisoners in the country receive TB testing at entry and exit and receive treatment in prison. This is exceptional and should be communicated broadly. Congratulations for the approach South Africa has taken in this regard.
TB is currently high on the agenda. We have the momentum. We heard about the interministerial Conference in Moscow, the discussions during the EU presidency of Estonia, there is the Moscow declaration. The main focus lies – fair enough – on multi drug resistances and access to treatment.
Nevertheless, future conferences and meetings should be used to address the situation on TB in prison and the responsibility Governments have in this regard: the International AIDS Conference in Amsterdam, the UN HLM on TB in New York .
Again, health must not be part of the punishment prisoners face. Prisons have to become healthier places and not be a risk-factor by definition.
Let us stop the isolation “hard-to-reach” prison health authorities still face and integrate them better in our discourses!
The SDGs will not be achieved if we allow or even support the further exclusion of prison health realities.
By All-Ukrainian Network of PLWHA
The conflict in Ukraine lasts for 3 years. 10,000 people died, Ukraine faced a large-scale migrant crisis – 1.5 million people became internally displaced persons. Part of the territory in the east of Ukraine (part of the Donetsk and Lugansk regions) is temporarily not under the control of the government of Ukraine. And this is also a big problem in the context of HIV infection. The statistics provided by the “republics” can not be trusted, since in the context of a military conflict, the lack of access to condoms, HIV testing, the closure of opioid substitution therapy programs, the surge in drug use due to post-traumatic syndromes, the lack of information on available ART treatment must inevitably lead to an increase in the spread of HIV.
It should be noted that at the NGCA (Non–Government Controlled Arears) – are situated 11 prisons, which currently have about 14,000 Ukrainian citizens, many of whom are being held illegally. Pre-war statistics show that Donbass has been and remains one of the sad leaders in HIV prevalence, including in prison. And in the context of conflict, there is no access to HIV testing in prisons, access to antiretroviral therapy, psychological and social support is difficult or impossible, the situation with food and access to drinking water has worsened, and there is no access to testing for CD4 and viral load.
Even before the conflict, HIV-positive people in prison had tuberculosis, now there is even no data on this problem that could be trusted. In addition, information about the situation with treatment and HIV prevention in prisons in uncontrolled territory is no longer open, the access of NGOs to prisons is prohibited / complicated. And according to human rights activists data, prisoners in uncontrolled territories are used for forced labor, regardless of their state of health.
As a matter of fact, HIV positive people in prisons are deprived of their basic rights, including the right to legal assistance, since neither the laws of Ukraine nor any other laws act on the NGCA. Note that according to NGO statistics, about 10% of convicts are MSM, half of them are subjected to violence, including sexual, every second, was forced to provide sexual services for survival.
We call upon all international organizations, UNAIDS and co-sponsors to apply its mandate to help people in prisons in the NGCA and include in the agenda and priorities saving the lives of HIV-positive people.
3 года продолжается вооруженный конфликт в Украине. 10000 человек погибло, Украина столкнулась с масштабным мигрантским кризисом – 1,5 млн человек стали внутренне перемещенными лицами. Часть территории на востоке Украины (часть Донецкой и Луганской области) временно не подконтрольна правительству Украины. И это также, большая проблема в контексте ВИЧ инфекции. Статистика, которая предоставляется с неподконтрольных территории, не может вызывать доверия, так как в условиях военного конфликта – отсутствие доступа к презервативам, тестирование на ВИЧ, закрытия программ опиоидной заместительной терапии, всплеск употребления наркотиков вследствие посттравматических синдромов, отсутствие информации о доступном лечении АРТ – привели к росту уровня распространения ВИЧ.
Просим не забывать о том, что на NGCA остались места лишения свободы – 11 тюрем, в которых отбывает наказание на данный момент порядка 14000 тысяч Украинских граждан, многие из которых удерживаются незаконно.
Довоенная статистика говорит о том, что Донбасс был и остается одним из печальных лидеров по уровню распространенности ВИЧ, в том числе и в тюрьме. А в условиях конфликта, в тюрьмах отсутствует доступ к тестированию на ВИЧ, затруднён или невозможен доступ к антиретровирусной терапии, психологическому и социальному сопровождению, ухудшилось ситуация с питанием и доступом к питьевой воде, зачастую нет доступа к тестированию на СД4 и вирусную нагрузку. И до конфликта, извечным спутником ВИЧ-позитивных людей в тюрьме был туберкулез, сейчас нет даже данных относительно этой проблемы, которым можно было бы доверять.
К тому же информация о ситуации с лечением и профилактикой ВИЧ в колониях/тюрьмах на неподконтрольной территории, больше не является открытой, запрещён/усложнен доступ НГО в тюрьмы. А по данным правозащитников, заключенных, на неподконтрольных территориях используют для принудительного труда, вне зависимости от их состояния здоровья.
По сути дела, ВИЧ позитивные люди в тюрьмах лишены своих базовых прав, в том числе и права на правовую помощь, поскольку на территориях временно неподконтрольных правительству Украины не действуют ни законы Украины, ни какие-либо другие законы.
Отметим, что по статистике НГО, около 10% осужденных, являются МСМ, половина из них подвергается насилию, в том числе и сексуальному, каждый второй, вынужден был оказывать сексуальные услуги ради выживания.
Призываем все международные структуры, UNAIDS и организации коспонсоров применить свои мандат для помощи людям в тюрьмах на NGCA и включить в повестку дня спасение жизни ВИЧ позитивных людей.
By The Global Network of People Living with HIV (GNP+)
The punitive approach to drugs problem have increased incarceration, which lead to overpopulated in most of the facility while drug use continues to be common in the prisons, thus increases vulnerability to HIV, TB and HCV infections for inmates, especially PWID.
Let me give you example from Asia-Pacific, but it is relevant for other regions,
Government’s of the region claims of harm reduction services provision in prison, but in practice NSP program remains unavailable in most of countries and prisons.
Only some countries (5 countries, incl. India, Indonesia, Macau, Malaysia and Vietnam – Global Harm Reduction report 2016) have started OST program in small number of facilities.
With very small allocation for inmate’s health under national budget and with decreased international funding for global harm reduction program and lack of political will from governments HIV and broader health services in prison will have most severe impact to PWID and key populations in closed settings. We are not done, it is not enough, we need further development, and what we see now it is cuts of budgets and efforts.
Imprisonment is a restriction of liberty, but a person can not be restricted in other rights. But, what we observe around the world, I emphasize throughout the whole world, including developed countries, this is a completely different situation. HIV, TB and HCV diagnostic and care services are limited and often difficult to access because of stigma and discrimination and actually lower human rights standards for prison. It seems to be completely other world, and it follow its own rules, and human right, one of which is right for health, are not working in prison and close settings conditions.
Let me give you example from North America – Today, in the US, an HIV-positive asylum seeker from Venezuela is on hunger strike to protest his inadequate health care and we have heard repeated stories from HIV-positive asylum seekers of inappropriate detentions combined with denial of specialist care while detained.
It is especially painful when people go to prison as a result of the criminalization of HIV. Since the beginning of the year in Belarus, according to the Ministry of Internal Affairs, 106 crimes related to HIV infection transmition have been registered. Absolute leader was the Gomel region (83 cases), the lucky outsider – Vitebsk (1 case).
This law existed for a long time, but was not used, but suddenly this year the Ministry of Internal Affairs began actively use this law, in majority it is used toward married couples who were once discordant and at the moment both spouses are HIV positive. Unexpectedly the number of cases of conviction under this article reached hundred of cases.
But we are talking about human beeings, we are talking about a little girl who was left without her mother, since her mother is convicted and is imprisoned. Her husband was HIV-positive long time before, but for several years he lived and worked in the Russian Federation and did not register at the AIDS center at that time. After his return, he registered, but Ministry of internal Affairs blamed his wife, who was registered as HIV positive earlier then he was for transmitting the HIV to him. Mom was convicted and separated from the child.
We know that the Ministry of Health supports the community’s efforts and we are grateful a lot and grateful to the UNAIDS for their assistance and support, and we understand that this is a long process and that the Parliament should adopt amendments and then it should be approved by the President of Belarus Republic.
But this little girl and we – we all find it difficult, unappropriated to wait so long, and we call upon all the involved into that process partners to do everything possible, we ask for more efforts to speed up the process as much as possible.
The problem in our opinion lies in the fact that medical care in prison and observance of human rights violations in prison are not under the jurisdiction of the Ministry of Health. As we see the situation – it is Ministries of Justice and the Ministries of Internal Affairs who are responsible for strengthening the criminalization of HIV-positive people and representatives of key groups and for conditions and health access for those who are imprisoned.
In accordance with what has been said, we propose to strengthen coordination and involve the Ministries of Justice and the Ministries of Internal Affairs into that discussion more proactively, we call upon the Member States and UNAIDS to initiate a specialized meeting and negotiation process with representatives of these Ministries in order to strengthen work in this direction.