PxPulse: The Advocacy Chronicles with SMUG’s Allan Mwasa

On this episode of The Advocacy Chronicles, we’re speaking with Nsubuga Allan Mwasa, a Ugandan activist, clinical psychologist and an advocate for mental health and LGBTQ+ rights. Allan serves as Strategic Initiatives Manager at Sexual Minorities Uganda, or SMUG, which has been at the forefront of the fight for LGBTQ rights, often facing severe challenges including legal battles and violent opposition.

Despite these challenges, SMUG continues to advocate for the fundamental human rights of the LGBTQ community. It does this through legal action, public awareness campaigns, and international advocacy. SMUG is also part of Convening For Equality Uganda, or CFE, a coalition of civil society groups dedicated to challenging Uganda’s Anti-Homosexuality Act. The Anti-Homosexuality Act (AHA), signed into law in May 2023, significantly increased discrimination and violence against the LGBTQ+ community. Despite widespread international condemnation and ongoing legal challenges, the law was upheld by the Constitutional Court in April 2024. Petitioners have since filed an appeal to the Supreme Court seeking to overturn the law, which remains one of the strictest in the world, including life imprisonment and death penalty for certain offenses.  

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Resources

Follow the Conversation at Convening For Equality Uganda’s Social Media Accounts

Ezra Meme

Ezra is a public health advocate with a background in combating HIV-related stigma and contributing to the innovation of the HIV Stigma Index. His experience in Monitoring and Evaluation of HIV/TB care and treatment projects drives his evidence-based approach and supports his effort to integrate HIV prevention efforts with pandemic preparedness activities. As an AVAC 2024 Advocacy Fellow, Ezra aims to bolster Uganda’s response to emerging pandemic threats. As the country develops the New Action Plan for Health and Security, a unique opportunity is presented for budget advocacy and monitoring compliance with International Health Regulations. Through collaborative efforts, and fostering community engagement, Ezra hopes his project can empower vulnerable populations and build resilience against future health crises in our push for global health equity.

Ruth Akulu

Updated January 2024

Ruth is an Advocacy Officer at ICW East Africa. She is a member of the Young Women’s HIV Prevention Council, the DPP (Dual Prevention Pill) Civil Society Advisory Group and the Regulatory Pathways for MPTs Working Group. Ruth was crowned Miss Y Plus 2nd Runner-Up 2019/20 and also won the Y Plus Media Advocate award in 2020.

Impact

Ruth mobilized Uganda’s regulatory authorities to prepare for the Dual Prevention Pill and to establish the Product Regulators Engagement Committee. She also successfully led advocacy to secure pharmacy distribution programs for PrEP.

Read about some of Ruth’s latest work in our CASPR Results Bulletin (October 2023).

Media Advocacy

Materials

Winifred Ikilai

Wini was the first AVAC Fellow to integrate COVID into her advocacy targets and the pay-off was huge. She successfully engaged social media, spearheading a campaign to secure ARVs, food, hygiene packs and other services and supplies for 2,700 households in 115 districts under lockdown. Her advocacy earned her the 2021 Omololu Falobi Award for Excellence in HIV Prevention Research Community Advocacy while also garnering opportunities to collaborate with IAVI, aidsmap, Aljazeera and others.

What’s more, Wini won big gains for improved HIV treatment literacy and counseling through her creation of the Beyond My Pill Campaign. As part of her advocacy for improved treatment services, she organized a national level dialogue on test and treat, revitalizing the voices of PLHV networks and mobilizing for further PEPFAR spending. She won both recognition and funding to enhance treatment programs, reflected in Uganda’s National HIV and AIDS Strategic Plan 2021/21–2024/25.

End of Project Summary Video

Media

Shakirah Namwanje

Shakirah is Programs Officer at UNASO. She is a survivor of child sexual abuse and a young woman living with HIV. She is an advocate for positive living and HIV prevention, and works tirelessly to see to it that “my HIV ends with me”. Shakirah leads peer education and counseling of young people through experience sharing, music, dance and drama. She is also an activist for the end of sexual abuse in Uganda, especially against girls and young women, and uses radio and talk shows to tell her story to inspire more girls to speak up about their challenges and seek help.

Fellowship Focus
Shakirah supported young people in Uganda to engage with and influence ongoing HIV prevention research in Uganda; she strengthened PrEP and microbicides awareness and created demand for PrEP among young people. She also pushed for policies that protect against gender-based violence and that support HIV and sexual and reproductive health integration. She established an inter-university coalition to provide a platform for student leaders to discuss HIV related issues in eleven universities across the country.

In Their Own Words
For me, to give a young person out there any chance to a better life is important and is the source of my strength to advocate for HIV prevention.

Media

Materials

Bridget Jjuuko Ndagaano

Bridget currently leads Acts101 Uganda, an organisation she founded after her Fellowship. Acts101 focuses on health and developmental programs for children, adolescents and youth. Her recent HIV/sexual and reproductive health and rights (SRHR) work has involved targeted advocacy for accelerated engagement of adolescent girls and young women in HIV programs and research both national and globally. At the time of her project, she had over six years of experience in adolescent SRHR services delivery, psychosocial and behavioral support for children and youth and HIV/AIDS and key and priority population programming.

Fellowship Focus
Bridget led a campaign for the acceleration of PrEP rollout for young women in Uganda. She successfully advocated for the integration of PrEP (and other HIV prevention) into the national education curriculum and the integration of HIV prevention into SRHR services as a PEPFAR priority. She also pressured the National AIDS Council to finally develop its PrEP communications plan. Bridget was instrumental in bringing PrEP and prevention information to young women at the Naguru Teenage Information Center.

In Their Own Words
Advocacy for comprehensive HIV prevention services for the young adolescents, ages 10-17, is still a hard area, especially coupled with the policy environment that doesn’t favor access to family planning services for adolescents.

Materials

Media

Moses “Supercharger” Nsubuga

Moses is a musician, radio and TV presenter and HIV advocate who has lived with HIV since 1994. He has used the courage from the early days of his diagnosis to propel himself to the global stage as one of the most formidable HIV prevention, treatment and cure research community advocates. He currently chairs the Joint Clinical Research Centre’s Community Advisory Board and represents the African community on the ACTG, INSIGHT and AIGHD boards. He is currently training new prevention and cure research advocates and is also fundraising and constructing an HIV treatment and adherence center in Uganda.

Fellowship Focus
Moses’ Fellowship advocacy objective was twofold: to campaign for widespread use of viral load testing along with third-line treatment for those with ARV drug resistance and to put the need for cure research front and center in Uganda. He achieved the commitment of third-line therapy with support from PEPFAR. He also created the CRAG (Cure Research Advocacy Group) and co-hosted Africa’s first cure meeting for civil society advocates with IAS and AVAC. He projected the need for cure research through his radio program, and as a musician, has spread the word through songs about HIV drug resistance.

In Their Own Words
I will continue with my advocacy and spread the gospel to end the epidemic in every area. I hope to continue organizing cure meetings and plan to lobby IAS to take the cure academy to West Africa. I continue to lobby the Ministry of Health to regionalize third-line services and promote adherence interventions.

Materials

Moses was featured in a BBC World Service podcast. Listen to “Travelling Home Next to My Coffin”. He also appears in an article “I was diagnosed with HIV 25 years ago” in The Daily Monitor.

Charles Brown

Charles is the Executive Director of Preventive Care International, an NGO he founded after his Fellow’s project, and still works on various PrEP efforts at his host organization, the Infectious Diseases Institute. At the time of his project, he had been associated with HIV clinical trials for more than seven years. He worked on the HSV2/HIV study, Partners PrEP study and the Partners Demonstration Project. His focus was on HIV counselling and testing and adherence support and community education for serodiscordant couples and key populations.

Fellowship Focus
Charles advocated for the rollout of PrEP with high-risk groups. He worked with Uganda’s AIDS Commission to include PrEP in its National Strategic Plan and laid the groundwork for the development of guidelines for PrEP rollout.

In Their Own Words
I’m happy that it’s no longer “Charles Brown for PrEP”, but it’s now civil society for PrEP, where I’m part of the civil society.

Charles’ Media Advocacy:

Sylvia Nakasi

Sylvia is currently the Acting Executive Director for the Uganda Network of AIDS Service Organisations (UNASO). She has extensive experience working on HIV prevention, research advocacy and program development and management, with specific focus on project cycle management, resource mobilization, capacity building, networking and advocacy at the community, district, national and international levels.

Fellowship Focus
Sylvia documented lessons learned about VMMC for HIV prevention implementation and influenced its rollout in Uganda. She also explored and documented perspectives regarding ARV-based prevention in Uganda in order to prepare for the possible introduction of pre-exposure prophylaxis (PrEP), 1% tenofovir gel and treatment as prevention.

In Their Own Words
In my opinion, as advocates it’s our duty to bridge the knowledge gap in our communities, sensitize the communities and help change their attitudes and behaviors towards interventions that would most benefit communities to make prevention and treatment a reality.

Sylvia’s Advocacy

Richard Hasunira

Richard wears many hats: he is an economist, policy analyst, journalist, a passionate HIV/AIDS advocate, and before the Fellowship he was Communication Manager at HEPS-Uganda, a health rights advocacy civil society organization. At the time of his Fellowship project, he had been team leader of policy advocacy research studies for the International Treatment Preparedness Coalition (ITPC) and the Regional Network for Equity in Health in East and Southern Africa (EQUINET). Richard’s advocacy work for HIV prevention research started in 2007, when he was part of a media and advocacy mapping study for new prevention research in Uganda. He is keen on biomedical research into microbicides because of the hope they offer to women, who remain vulnerable to and are disproportionately affected by HIV/AIDS.

Fellowship Focus
Richard analyzed the community engagement mechanisms of the MDP 301 and MTN 003 (VOICE) studies as case studies in documenting community experiences, perceptions and lessons learned in order to contribute to a better understanding of the effects of the closure of HIV prevention clinical trials on communities, to identify best practices that should be emulated in future trials and to highlight areas that need improvement and advocacy. Richard also contributed to a better understanding and appreciation of biomedical HIV prevention research and advocacy within trial communities and the broader community of civil society at the national level in Uganda.

In Their Own Words
Have we not been over-excited by the possibility of an ARV-based prevention option, so much so that we seem to have “put all our eggs in one basket”? Doesn’t an AIDS vaccine–even a modestly effective one–still have a place in the HIV prevention puzzle?