The Global Network of People Living with HIV (GNP+) convened a meeting with people living with HIV (PLHIV) across the world impacted by US administration action that has disrupted work at PEPFAR and USAID. While the crisis has shown how HIV communities are vulnerable to sudden disruptions from the impact of political decisions they have little control over, it has raised a rallying call for PLHIV to come together strongly now and ensure the security of life-saving treatment to stay alive.
The meeting was an accumulation of weeks-long consultations with different country and regional PLHIV network leaders to determine the impact of the Executive Order, and the stop-work order. GNP+ also partnered with Aidsfonds and put out an online survey mapping the impact and providing context and analysis.
Since January most communities were first hit with panic over access to treatment until it became clearer that essential services will still be maintained. Now, most are affected by uncertainty around the resolution of the PEPFAR programs and its impact on supply chains and Community cadre human resources that are crucial in delivering services to those in need.
During the convening, the leadership of national PLHIV networks in various country networks shared how their organizations had been affected. Many have been forced to let go of community cadre staff- peer educators, adherence counselors, community health facilitators, and mentor mothers, including Jaringan Indonesia Positif (JIP) from Indonesia, which has let go of 100 community workers, Nigeria has sent home 347 while Rwanda has lost 11 immediate frontline staff.
“These key staff played an important role in re-engaging people living with HIV (PLHIV) who had discontinued their treatment and providing psychosocial support. They were not only advocates for improved healthcare services but also strove to reduce stigma and discrimination in society. Furthermore, they acted as role models for other PLHIV, to achieve their quality of life. To succeed in Ending AIDS, it is imperative that the donors, government, and other stakeholders continue to be urged to take action, and that the community remains committed to this vital objective,” Meirinda Sebayang, the Chairperson of JIP said.
Abdul the Director of the Network of People Living with HIV and AIDS in Nigeria (NEPHWAN) shared that over 24,368 ad-hoc workers in Nigeria have lost their livelihoods, with 347 of these workers directly impacted through their roles as NEPWHAN ad-hoc staff. They have had to give back office equipment like laptops that were funded to them by USAID under PEPFAR community system strengthening initiatives. Community workers have lost jobs.
“These individuals, who are living with HIV, now face even more severe challenges as they are forced to return their laptops, halting essential data collection efforts. The loss of their employment not only threatens their shelter and mental health but also disrupts their access to critical ARV treatment and exacerbates the many socioeconomic difficulties they already face,” he said.
Jacque Wambui from AfroCAB who through the project THRIVE are implementing linkages between community and health facilities support to address Advanced HIV Disease (AHD) cannot continue their work as the Community health practitioners in PEPFAR Supported community cadre were affected by the Stop Work order
“Apart from HIV access which has been affected we are now seeing people having to move to different clinics affecting contact tracing for TB patients for example, their samples are no longer being transported. I hope we will not experience a spike in cases of advanced HIV Diseases (AHD) detected and being referred to our facilities because, from the little that I saw during field visits last year, we have a lot of patients admitted to our wards with AHD, Ms. Wambui said,
Even with the Waiver and PEPFAR advice to keep operations going, we are noting that isn’t resulting in the resumption of services in some cases. Workers who have been called to resume duty are also on temporary hire causing further anxiety. For many, all these disruptions to their livelihoods will increase vulnerabilities, and impact their health and that of their families.
PLHIV Leaders remain concerned that services for the prevention of HIV are now not available for those who need them. Also concerning is the disruption of services and treatment for TB prevention and treatment. Over 161,000 people died of HIV-related TB in 2023.
“Our Global Health ambitions are to reach HIV epidemic control. This can only be achieved by stopping HIV infections and stopping AIDS deaths. HIV prevention services need to urgently resume to keep people from acquiring HIV, and dying from preventable and treatable opportunistic infections like TB” Florence Riako Anam, GNP+ Co-Executive Director said.
Despite this downside, the meeting demonstrated a movement of resilience as our networks collaborate with governments and key partners for solutions to end treatment disruptions while innovating to adapt the community interventions that are most impacted by the US decision. Some of the networks are responding by mobilizing staff to cover extra work to support communities and lobbying governments to absorb the frontline workers.
We would like to thank Country Governments highlighting Nigeria, and South Africa as shining examples of countries offering supplementary budgets and stepping up to define emergency response to address the gaps experienced due to the stop work order. We thank organizations that have set up emergency funds to fill in the gaps from this disruption, particularly to support much-needed community interventions and services that promote uptake, adherence, and demand creation for treatment and prevention services.
GNP+ would like to ask all of our peers living with HIV to get in touch with their health service providers and follow their directions. For those being transferred to other facilities, kindly reach out to PLHIV networks in your country for any guidance. GNP+ urges all people living with HIV to keep taking their life-saving medication. With all these disruptions, stopping treatment may feel like an option. Please do not let this disruption deter us from our quest to live a long, healthy, and quality life. Remember when PLHIV are virally suppressed, we cannot pass this virus to someone else. U=U.
We call on other Global Governments and donors to keep their promise to people living with HIV and those most impacted. Step up with bolder commitments towards the HIV Response ambitions to End AIDS deaths and Stop new HIV infections. Our lives depend on your leadership. We ask our donors to allow for budget reprogramming for us to address these critical and glaring gaps.
The leadership of national PLHIV networks across the world remains committed to convening to share their experiences, learn from each other’s responses, and build a framework for resilient PLHIV-led advocacy toward sustainability of the HIV response beyond 2030 to keep us alive.
Communities during the Living 2024 conference on 20–21 July 2024 as an official pre-conference to the International AIDS Society’s AIDS 2024 conference in Munich, Germany.
END
Our next meeting will be held on 27th February 2025 at 12: 00 CET, We ask PLHIV leaders to please register on the Google form to join all the meetings with are scheduled until 22 May 2025. For more questions, get in touch with us through communities@gnpplus.net
