AIDS 2024: New Ways for the Next Wave: Innovative R&D for the future of women’s prevention
This session will be 9:30AM to 11:00AM Munich time.
Women need a range of HIV prevention options to meet different needs, preferences and life circumstances. Currently available pills, rings and injectables are necessary but insufficient. How might we accelerate the delivery of methods we have while developing additional ones – including systemic and non-systemic methods, short-acting and on-demand products, to complement longer-acting ones? Product developers and advocates are collaborating on new approaches to expedite R&D of additional HIV prevention options. Notably, MATRIX is taking a unique approach, endorsed by the CASPR network of advocates, that aims to improve the odds of success of new products – through development, delivery and use.
This session will focus on new efforts to identify and develop promising options, strategically engage all stakeholders, decolonize R&D and involve potential users in all their diversities throughout the process.
Speakers:
Jeanne Marrazzo, National Institute of Allergy and Infectious Diseases
Sharon Hillier, University of Pittsburgh / Magee-Womens Research Institute
Kelly Chibale, Holistic Drug Discovery and Development Centre -H3D, University of Cape Town
Nyaradzo Mgodi, University of Zimbabwe- Harare Health Research Centre
Jerop Ruth Limo, Ambassador for Youth and Adolescents Reproductive Health Program (AYARHEP)
Moderators:
Navita Jain, AVAC
Kenneth Ngure, Jomo Kenyatta University of Agriculture and Technology
Session Chairs:
Sharon Hillier, University of Pittsburgh / Magee-Womens Research Institute
Imelda Mahaka, Pangaea Zimbabwe
This satellite session will be co-hosted by CASPR and MATRIX, with support from USAID and PEPFAR.
A Ray of Hope for Uganda LGBTQ Community Amidst Anti-Homosexual Law
Written by Namiganda Jael, a journalist in Kampala, Uganda. She is a health reporter, writer and anchor at Metro 90.8 FM. She is also media coordinator at Health Journalist Network Uganda and a member of Tobacco Harm Reduction Uganda and the Uganda Parliamentary Press Association.
When she felt a bruise on her private parts, Ramzay, a transgender woman and a sex worker who prefers to be identified by only one name for fear of persecution, rushed to the nearest health center for treatment.
While there, Ramzay asked the doctor for an ointment cream. The doctor loudly wondered if she was gay because the ointment cream was for gay people.
“I felt embarrassed and stigmatized by the rudeness of the doctor and her coworkers,” she said, adding that the doctor’s response was a negative attitude she’d repeatedly experienced in other public hospitals whenever she visited to seek health services, including Human Immunodeficiency Virus (HIV) prevention.
When Ramzay tested HIV negative at the beginning of 2023, she decided to visit a local group, Justice and Economic Empowerment for Women and Girls Organization (JWEEG), for HIV preventive products, such as condoms, lubricants, Pre-exposure prophylaxis (PrEP), and post-exposure prophylaxis (PEP).
However, when the anti-homosexuality bill was signed into law by President Yoweri Museveni in May 2023, she became worried that access to HIV preventive treatment would be hampered. She was right.
PrEP and PEP are treatments for people at risk of HIV exposure. PEP is more commonly used and is given to people who have been raped and to medical professionals exposed to HIV while working. It’s only given to people who have tested HIV-negative.
JEEWG was founded in 2015 by Waseni Harriet, also known by her trade name Cindy. Her focus was to bring HIV preventive methods such as condoms to Kasensero village, where she saw her fellow sex workers washing and sharing condoms.
It started with 25 members, but today, the organization has over 1,000 members who seek a wide range of services, including sexual and reproductive health, Waseni said.
To achieve her goal, Waseni looked for health service providers she could partner with to help bring HIV prevention and treatment measures to her community, including men who have sex with men and transsexual women.
But together with her partners, she did not give up. “So, we try to follow up on cases, especially those in the LGBT community affected by the law. At MARPI, we get all kinds of HIV medication; we collect ARVs for those who cannot pick it up from the facility because of fear or stigma,” she says, adding that for those who have relocated because of the law, HIV medication is taken to them or rendered to them in the nearest pick-up centers in the new areas.
In May 2023, Uganda passed a draconian and unconstitutional anti-homosexuality law. Sub-section two of Section Two of the Act states that a person who commits the offense of homosexuality is liable on conviction to life imprisonment.
In November 2023, human rights activists went to the constitutional court seeking nullification of the impugned law, arguing that it violated the human rights of homosexual people.
The decision came on April 3, 2024. Despite the court agreeing with the petitioners that some sections of the law infringed human rights as they were “…inconsistent with the right to health, privacy and freedom of religion”, in a ruling read by Deputy Chief Justice Richard Buteere, it upheld the law to the chagrin of many observers.
Article 27 of the Constitution states that no person shall be subjected to unlawful search of the body, home or other property or to unlawful entry of his or her premises. Article 24 on freedom from inhuman treatment states that a person shall not be subjected to any form of torture, cruel, inhuman, or degrading treatment or punishment or held in slavery.
With the constitutional court upholding the anti-homosexuality law despite such provisions, the petitioners filed an appeal at the Supreme Court in April, says Nicholas Opio, a human rights lawyer and one of the petitioners.
Opio says he was disappointed in the court’s ruling. “Striking section of the right to privacy and right to health was an attempt to appease donors to the health sector,” he says, adding the ruling didn’t help with safeguarding the rights of the LGBT community, whose existence is criminalized.
Genesis, a gay man who prefers to be identified by his first name only for fear of stigma and harm, says, “…nullifying some sections of the law seems to slightly calm the pressure on the health of the LGBT+ community, but the law in its entirety is ridiculous”.
“When the court nullified sections that obliged a medical practitioner or any other person to report suspected acts of homosexuality to police, I felt some slight relief because I am at least not worried about being reported by a doctor to authorities after learning that I am gay. “At least the patient-doctor confidentiality has been reinstated,” says Genesis.
Sharaim Ismael has been a sex worker since 2020 at the age of 18. As a transgender woman, she was assigned a male identity at birth but identified as a female. She has been moving from one place to another as a security precaution for her safety since the passage of the anti-homosexual law, she intimates.
“Because of my sexual identity and work, I left home because most people were threatening me, especially after the passing of the bill (Anti-homosexuality bill), so I ran away to northern Buganda,” she says.
Sharaim gets lubricants and HIV testing kits at JEEWG, which she uses to test her partners as she neither takes PrEP nor uses condoms as an HIV preventive measure.
PrEP is HIV medication administered to prevent people from contracting HIV from unprotected sex by 99%. With the Injectable drug, the risk is reduced by 74%, according to the United States Centers for Disease Control and Prevention (CDC).
According to the World Health Organization, HIV prevalence among transgender women is estimated to be 28.4 in eastern and southern Africa. As of 2023, Uganda’s national HIV prevalence stood at 5.8%, according to the 2020-2021 Uganda Population HIV Impact Assessment.
In 2017, the Uganda Ministry of Health introduced PrEP and PEP into the country to fight against HIV infections. However, it has been mostly out of reach to gay people “because of the stigma in some health facilities where they don’t feel safe to seek health services,” Sharaim laments.
Ramzay and Sharaim are among the key populations (most at risk) in Uganda, a community of people at a higher risk of getting HIV.
Key populations in Uganda include sex workers, prisoners, men who have sex with men, truck drivers, fishermen, and bodaboda riders.
According to the Uganda Population-Based HIV Impact Assessment 2020-2021, the HIV rate in the key population is said to be at about 11%. This is almost twice the national adult prevalence rate of 5.8%.
Another organization helping LGBT+ people in Uganda access critical reproductive health services is the Children of the Sun Foundation (COSF). Thanks to donor funding, it operates a free clinic and shelter for LGBT+ people.
COSF Executive Director Henry Mukiibi says despite their constitutional protection, members of the LGBT+ community have been shamed and publicly castigated by health workers in some public and private health services.
“One LGBT+ patient came here suffering from a hemorrhage and told us how a doctor shouted at him to get out of his clinic, accusing him of being gay and promoting bad sexual behavior,” Mukiibi narrates.
Even with the stringent law, Mukiibi says the COSF clinic has a permanent nurse and an on-call doctor to attend to the patients.
For HIV prevention, the clinic provides testing kits, condoms, and lubricants to the LGBT QI community. However, for HIV treatments, they are referred to licensed health centers that safely provide HIV treatment services to the community.
But COSF also does home delivery of drugs to members of the community who don’t feel safe going to health facilities to pick up their drugs for fear of stigma, discrimination, and even violence, Mukiibi reassures. To get the deliveries, patients in need call COSF or send a colleague to submit a request for them. Sometimes, through phone calls and home visits, the Foundation also follows up with the patients who fail to turn up for their medicine.
Sam, who prefers to be identified by his first name for fear of victimization, had his ARVs delivered to him for several weeks by COSF because he feared getting out of the house for several weeks. After the passage of the bad law, he was violently attacked and abused by some members of the village due to his sexual orientation.
“The home delivery of my HIV treatment drugs came in handy. It helped me adhere to treatment until I gained the confidence to get out and also shift to a new home,” says Sam.
“For PEP and PrEP, we refer members of the community to organizations such as The Aids Support Organisation (TASO), a local NGO that has been supporting people living with HIV and also involved in the fight against HIV spread for over 30 years and REACH OUT, a Community Health initiative NGO providing HIV services working mainly with urban and rural poor communities in Uganda where they get such services,” Mukiibi says.
He adds that for members who don’t feel safe moving to public spaces, the clinic partners with such organizations, which are then invited to provide outreach services to the community gathered at the clinic.
Dr. Nelson Musoba, Director General of Uganda Aids Commission, a government agency that coordinates the response to the country’s HIV/AIDS epidemic, rightly says preventive measures should be accessible to everyone who thinks they are at risk of contracting HIV.
“Everyone in Uganda should have access to all available HIV treatment services in Uganda without any kind of discrimination regardless of who they are,” he says, adding that the anti-homosexuality law doesn’t stop anyone from accessing HIV treatment.
However, Mukiibi disagrees. “When we have laws that discriminate against LBGT people, you increase the risk of violence and discrimination against them. We have seen them being stigmatized and discriminated against in health service centers because of their sexuality. The law increases and feeds the homophobia attitude even in the health practitioners,” he says.
The Situation in Kenya
In neighboring Kenya, although the situation isn’t better than in other countries where anti-homosexuality laws have been passed, the LGBT+ people are better off when it comes to access to health services, says Ishmael Bahati, the executive director of Persons Marginalised and Aggrieved Kenya (PEMA) and co-chair of Gay Bisexual Men (GBSM), network in Kenya that brings together all gay, bisexual men organizations working on health.
“In Mombasa County, for example, we have 14 government facilities which we have already sensitized the service providers to offer not only friendly services but also specific services needed for the gay and GBSMs.”
“PEMA does not have a distribution chain; we only do referrals. However, with our position on the national level, like at the coast, we do referrals and advocacy on health, mainly ensuring that the public/ government facilities can offer services to LGBTQI persons,” he emphasizes.
With the constitutional court having upheld the draconian anti-homosexuality law, eyes now turn to the Supreme Court to appeal, where the petitioners have filed an appeal to overturn the lower court’s impugned decision.
Advocates’ Guide for PPPR
Pandemic Prevention, Preparedness and Response in 2024
If you’re having trouble making sense of all of the initiatives around pandemic prevention, preparedness, and response (PPPR) this year, don’t worry—you’re not alone! This Advocates Guide provides a reference for the relevant information all in one place. The contents explain the major initiatives, key dates for involvement, how to get involved and make sure your priorities are heard by decision makers.
Avac Event
You Get What You Measure: Why Monitoring for PrEP Choice Helps Tell Our Story
The data we collect on a program determines its path and priorities. This webinar covered the current state of PrEP M&E and efforts to improve and simplify the data we collect, allowing our data to better reflect how people are using PrEP, support PrEP choice amongst the growing array of PrEP methods, and enhance the stories we can tell about PrEP program implementation.
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.
Accelerating the rollout of the full range of proven HIV prevention options depends on learning from what’s been done in the past and investing in coordination and innovation to put improved solutions in place. The Biomedical Prevention Implementation Collaborative (BioPIC) is doing just that. Over the last two years, BioPIC—a project led by AVAC with support from the Gates Foundation—has been gathering and sharing evidence on these critical lessons to ensure the next generation of HIV prevention products reaches everyone who needs and wants them with much greater speed and equity.
What We’re Learning—Highlights from 2024 Convenings
An ongoing series of think tanks, convened by BioPIC and WHO since 2021, are generating key insights for people-centered product delivery. Below, read the latest reports from these think tanks that are informing decision-making on priorities for accelerating access to PrEP. Go to the BioPIC’s page on PrEPWatch to find reports on all think tanks since 2021.
Early Insights from EBONI and PILLAR, February 2024: Early insights from ViiV Healthcare, the manufacturer of CAB for PrEP, from two CAB for PrEP implementation studies, EBONI and PILLAR. Conducted by ViiV in the US, these are among the first studies gathering data in real-world settings. Learn more
Taking Stock of PrEP Evidence, March 2024: An analysis of current data and priority evidence gaps. This inquiry was not focused on any one PrEP product, and its findings are informing the focus of future think tanks. Learn more
Discussing Early Results from the SEARCH Dynamic Choice Study, April 2024: Professor Moses Kamya of Makerere University shares early insights from the SEARCH Dynamic Choice Study in Kenya and Uganda, which gave participants a choice between oral PrEP, PEP, and CAB for PrEP, and analyzes the role of choice in PrEP coverage. Watch here
PrEP and the Role of HIV Self-Testing, May 23: Highlights from the WHO guidance on use of self-testing (HIVST) as an innovative way to increase PrEP access and coverage and further simplify PrEP delivery. Panelists also share experiences with procurement, costing, rollout and scale-up. Watch Here
We hope you will book mark these resources, and stay up to date on findings from future think tanks and webinars in 2024 on the BioPIC page of PrEPWatch.
What’s Next for the Pandemic Accord? A civil society and communities perspective
This side event, co-sponsored with Care and Frontline AIDS, was part of the World Health Assembly and featured expert panelists discussing what’s promising in the Pandemic Accord, what we expect from governments, and what’s missing for successful implementation. Selected panelists came from different health areas but all have experience in pandemic prevention, preparedness, and response.
This panel also helped civil society prepare for the coming year and gain capacity to meaningfully engage in advocacy around implementation of the Accord.
The GPP Body of Evidence: GPP Monitoring and Evaluation Frameworks, REAL and REAL2
GPP is an essential part of clinical trials research, and an ethical imperative to creating equitable and effective clinical trials. GPP is created by and for communities, so it necessarily looks different and takes multiple forms in different cultural contexts. This kind of responsiveness is inherent to GPP, but it also makes it difficult to measure and evaluate.
In this webinar, we learned from the Realist Review of Community Engagement and the REAL2 review of participatory research that both examined frameworks for evaluating community engagement efforts, as well as the Global Health Network’s new course on evaluation, and other evaluation efforts in the field of GPP.
It’s Not Just about the Trial: GPP from discovery to delivery in TB research
GPP enhances every stage of the research lifecycle. In this webinar, our partners at TB Alliance, SMART4TB, and THINK will shared experiences, lessons learned, and innovative approaches in integrating GPP at the organizational, network and situational level, from drug development through delivery.
Pandemic Accord negotiations have so far failed to effectively engage advocate and civil society voices. With key parts of the Pandemic Accord moving toward further negotiation over the next few years, the Coalition of Advocates for Global Health and Pandemic Preparedness calls on advocates in and around the World Health Assembly to continue to rally for meaningful engagement with civil society and community and leadership roles for both in the ongoing multilateral process for pandemic prevention, preparedness, and response (PPPR).
For decades civil society and community organizations have been recognised and legitimately engaged as vital stakeholders and leaders in the HIV response. But this principle of inclusion has been inadequately upheld in other health areas, and vitally important initiatives, including the negotiations of the Pandemic Accord, have failed to build on the success of the HIV response and fully utilize existing models and mechanisms for engagement. Without them, these efforts exclude critical stakeholders when they should integrate civil society organizations (CSOs) as a crucial driver of policy and programming. Although certain initiatives have created some opportunities for CSO involvement, organized campaigns and public outcry have been necessary to garner a seat at the table. With every new program, fund, or secretariat, advocates are compelled to engage in the same repetitive battle to obtain a minimum of two voting seats and consultation prior to decision-making.
Civil society representation at the World Health Assembly has been reduced, a formal mechanism for engagement at UN High Level Meetings has been rejected, requests for even observer status during Pandemic Accord negotiations have also been rejected, and civil society and community advocates have experienced hostility at international convenings such as International Conference on AIDS and STIs in Africa (ICASA). Preventing, preparing, and responding to disease outbreaks requires public trust, understanding of regional or cultural ways of working, geographical limitations, and the true needs of communities. We cannot build effective health infrastructure by erecting barriers to civil society and community leadership.
It is absolutely crucial that civil society and communities band together to demand meaningful engagement in the processes that follow and refuse to permit governments and institutions from rolling back CSO access and decision-making power even further.
We have seen throughout the 40 years of the HIV/AIDS response that meaningful engagement turns the tide when biomedical innovations fall short of their potential because of real-world challenges. Decision makers, government representatives, and multilateral institutional leaders must enshrine a baseline level of meaningful civil society engagement practices where and when international decisions are made. As lessons from the global HIV response show us, it is possible, if not probable, that many of the outstanding issues in the Pandemic Accord could have been solved with civil society input and influence, as knowledge-brokers who bring unique insights, find solution, and foster trust where it’s needed most.
The Coalition of Advocates for Global Health and Pandemic Preparedness is a group of organizations advocating for an integrated and holistic approach to preparedness that emphasizes equity, inclusion, and synergies of multiple global health programs in advancing preparedness. We believe that all global health initiatives should be centered on the key principles of community leadership, equity, access, and human rights and that efforts to fight current epidemics and strengthen health systems are central to equitable pandemic preparedness.
The biggest lesson from the fight against HIV, TB, and malaria is that if space is not reserved for civil society, we must take it – “Nothing For Us Without Us”. Join us at the World Health Assembly or watch the recording of our side event focused on civil society engagement if you can’t make it to Geneva, and keep demanding meaningful engagement in every global health initiative.