The Global Network of People living with HIV (GNP+) hosted the 5th PLHIV convening on 27 March 2024, where network leaders from Kenya, Brazil and Europe shared their experience leading their National level PLHIV Stigma index to identify cases of HIV stigma, discrimination, related bottle necks and using it to evolve local to global advocacy to improve access to treatment.
The People Living with HIV (PLHIV) Stigma Index is a standardized tool to gather evidence on how stigma and discrimination impact the lives of people living with HIV. It was developed to provide much-needed data and evidence that could be used to advocate for the rights of people living with HIV. More than 100 countries have completed the study, and over 100.000 people living with HIV have been interviewed. The PLHIV Stigma Index was developed to be used by and for people living with HIV and was created to reflect and support the Greater Involvement of People living with HIV and AIDS (GIPA) principle, where PLHIV networks are empowered to lead the whole implementation of the PLHIV Stigma Index study in their respective countries.
During the convening, the leaders highlighted their lived experiences processing data on PLHIV stigma index, documenting barriers to access to HIV services, and drawing strategies to influence local for global policies and realizing the global goals of ending AIDS. At the heart of this achievement is education and awareness to address stigma and create an enabling environment for the use of testing, treatment, and prevention services.
The stigma indexes revealed an underlying economic inequality that aggravated stigma, which meant that the breakdown of HIV health services would mean loss of the community’s trust in the health system, and increased risk of transmission among adolescents, pregnant women, newborn children, and key populations, as well as death.
We heard from Thiago Jerohan, Project Advisor Gestos. The network decided to take stigma index data directly to the Aids department, to lobby for better policies that could respond to their findings. They also approached small partners with international institutions and corporations, expanding their scope of intervention to fight stigma beyond health circles.
They used the index as a tool to engage institutions, promote access to work and income, fight oppression and improve mental health response for PLHIV, and spread more information on how to report serophobic crimes. Gestos also noticed that most PLHIV were isolated, attending private treatment without the psychosocial support that is the bedrock of building resilience. It is now more proactive in fighting social media individualization and promoting community engagement to build a stronger advocacy movement.
“We started to talk about what we could do differently from what we did earlier to improve the data that we were going to collect and what we were going to do with it. We selected not only organized movement activists but also social media influencers who reached other profiles of PLHIV and went deeper into intersections of race and sex in HIV stigma,” Jerohan said.
Medea Khemeldize, Executive Director for the Eurasian Women’s Network on AIDS (EWNA), membership-based organization, which brings together women leaders from 14 countries in Eastern Europe and Central Asia (EECA), It is the only organization in the region uniquely dedicated to protecting the rights of women living with and vulnerable to HIV. Shared how they are modeling the Stigma index to respond the disparities of access to HIV treatment in Europe.
Despite Europe having better access to treatment and care, deeper research by the stigma index revealed hidden experiences of discrimination, especially on women around pregnancy, delivery, and neonatal care. Their experiences of victimization, imprisonment, and criminalization, and barriers to access to health and mental health support. The stigma index also identified intersectional correlation with people who use drugs and ethnic minorities who were denied access to medicine, faced verbal and psychological abuse, and even forced sterilization.
About 67 out of the 365 respondents reported that they had been targeted and discriminated against in the healthcare setting by a healthcare provider row to a family member in relation for the experience of pregnancy, postpartum, and delivery because of their HIV status. And we found the type of services they were being denied, like pain management, lack of access to breastfeeding, and the right to abortion,” Ms Khemeldize said.
Nelson Otwoma, Executive Director for the National Empowerment Network of People Living with HIV/AIDS in Kenya (NEPHAK) says one of the key opportunities that has come with launching the Stigma index now is their ability to use this data to influence the national HIV program reforms for integrating HIV treatment into general healthcare systems as the government adapts to take ownership of the HIV response in Kenya.
Nelson highlighted, they also noted how stigma impacted adherence to medicine, reporting very high prevalence of people afraid of having their status disclosed, delaying treatment, and leading to Advanced HIV Disease (AHD).
Using the stigma index findings, the Nairobi network hopes to influence the shift of HIV treatment into general healthcare by integrating the findings into guidelines to drive the strategy towards scaling up service delivery through community pharmacies and striving towards multi-month dispensation of medicine.
They also want to ensure the new HIV response takes care of co-infections like TB and comorbidities to non-communicable diseases while ensuring the capacity of local personnel to handle more workload amidst the funding squeeze. Kenya is also pushing for digitization of patient data to reduce waiting times stigma stigma-related barriers to access, ensuring privacy, confidentiality, and consent in delivering HIV treatment.
“In the Kenyan case, we are now moving to integrate HIV care into general health services, and therefore we believe that in the ongoing integration we need to prioritize addressing HIV related stigma and discrimination in all its forms, so that people can continue to take care and utilize the services. What we are emphasizing here is that healthcare workers need to understand that people need to get treatment in a humane, dignified manner and in an area that respects their privacy and confidentiality and their human rights,” Mr Otwoma said.
The bimonthly PLHIV leadership convening continues to grow in significance, helping networks to build resilience by learning ways of coping from peers to improve local strategies. By sharing best practices and broadening the strategies that work, GNP+ convening is helping grow advocacy from local to global, linking ideas and building partnerships that will define HIV response for tomorrow.
As the dust settles around the HIV treatment funding crisis, communities of PLHIV have to contend with fiscally strained governments tackling polycrisis, broken supply chains, anxiety, and rising misconceptions with limited resources. These convenings have provided an opportunity for PLHIV to come together, to learn, share, and identify priorities to secure what matters most, which is access to much-needed treatment services, including the knowledge to effectively engage with governments in adapting and re-imagining the HIV programs at the country level. We aim to stay on purpose to ensure all PLHIV have access to HIV treatment, contribute to the ambition of ending AIDS deaths and stopping new HIV infections.
“The reason why we thought we needed a stigma index community expert pool is because since the index is implemented at the country level and run with community experts at this level, we do believe that the expertise they have can be of benefit to other countries. We also do not want to limit the index to research; there is so much we can do with this data, there is so much that needs to be done with this data,” Cedric Nininahazwe, GNP+ Director of Global Advocacy, Positioning and Partnerships said.
GNP+ recognizes that the PLHIV community has to take up the leadership and own HIV response for the future and hopes to empower communities to prioritise equity and community needs, combat stigma and barriers to gender equality, strengthen grassroots organisations, to build local for global advocacy. By creating platforms to address legal and policy barriers: reform criminalizing laws that perpetuate stigma and exclusion, and drive HIV acquisition to create inclusive, rights-based health systems, we hope to lead the fight against HIV, working with governments and stakeholders to embrace transformative strategies.
You can attend the next convening in person on 10 April 2024 in Nairobi or join us virtually during the meeting.
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GNP+ is the global network of people living with HIV led by and for people living with HIV. We strengthen impactful PLHIV-led local for global advocacy and community leadership facilitated by our strong movement building through grant making with country and regional networks of people living with and most impacted by HIV
MEDIA CONTACT:
FLORENCE RIAKO ANAM | Co-Executive Director
friakoanam@gnpplus.net | +25 472 147 7384 Kenya
