In this issue, we highlight the challenges faced by communities and teams working in HIV prevention research, treatment, and care in Africa and the importance of partnerships that are contributing to surmounting these challenges in the midst of a global pandemic.
Welcome to the sixth edition of IAVI’s VOICES newsletter. This issue highlights the challenges faced by communities and teams working in HIV prevention research, treatment, and care in Africa and the importance of partnerships that are contributing to surmounting these challenges.
Since an outbreak of the Coronavirus disease 2019 (COVID-19) was first reported in China in December 2019, the disease has spread to every continent except Antarctica. The new pandemic has indelibly marked our lives, and our conversations are punctuated with the phrase “new normal,” often referring to the inability to gather in public, travel freely, visit social places, or conduct business as usual in the office and market place as we try to control the spread of the disease.
In keeping with the travel restrictions, the 23rd International AIDS Conference (AIDS 2020) was held fully online. The recurrent message at the annual meeting convened to highlight successes and address gaps in HIV treatment, prevention, and care was our collective failure to meet the UNAIDS 2020 targets to end the epidemic. Among the strategies the UNAIDS Executive Director Winnie Byanyima proposed to get us back on track were combination prevention, human rights of key populations, and addressing the multiple vulnerabilities of adolescent girls and young women in sub-Saharan Africa.
As such, the announcement of the superiority of long-acting injectable pre-exposure prophylaxis (PrEP) cabotegravir to the daily oral PrEP pill in cisgender men and transgender women who have sex with men; and the positive scientific opinion on the dapivirine ring from the European Medicines Authority are encouraging. As we wait for the development of an effective HIV vaccine, there is need to have different prevention options that cater for needs and preferences of different communities.
For some people the new normal means ‘freedom’ to work remotely, avoiding long commutes, more time with family members, and having to stay connected virtually through tele-video conferencing and by phone. For many however, the new normal has meant isolation and loss to livelihoods. Many living with pre-existing medical conditions like HIV and TB have been cut off from services and support by restricted movement, closure of facilities, and diversion of human and financial medical resources to dealing with the COVID-19 pandemic.
The solidarity of world leaders, organizations, and financial institutions pledging US$8 billion for COVID-19 vaccine research has shown a global recognition for the need of a multi-nation, multi-sectoral collaboration to ensure the greatest good possible. The question remains whether such solidarity can be applied to the four-decade long HIV epidemic.
While we take on new global health challenges, we should not take our eyes off the target of stopping new HIV infections. Adding a safe, effective vaccine to the current prevention toolkit could very well be the game changer.
Finally, if you know someone else who would benefit from reading VOICES, please share it with them! We also encourage you to write to us and let us know how we can improve this newsletter.
Associate Director Advocacy, Policy, and Communications
The views and opinions expressed in this newsletter are those of the authors
and do not necessarily reflect the official policy or position of IAVI.
Supporting community engagement with responsible journalism during COVID-19: Lessons learned from the HIV response in Uganda
By Hilary Bainemigisha, community advisory board member, Uganda Virus Research Institute
I have been a member of the Uganda Virus Research Institute (UVRI) Community Advisory Board (CAB) since 2011. Being a CAB member is very fulfilling as I not only serve the community, but also have an opportunity to be relevant to my fellow journalists, especially science journalists, whom I actively mentor and train.
While journalists have the audiences and communication skills, they often lack sufficient knowledge of the science to enable them to communicate simply yet accurately. As a CAB member, I was able to deepen my understanding of the science of immunology, vaccine development, and participate in social mobilization and then transfer what I have learnt to fellow journalists.
By training my colleagues in HIV vaccine development and clinical trials, I have contributed to closing the gap on inaccurate reporting on HIV issues, bringing them up to speed on current and impending trials. I have also been able to give the journalists access to resource persons and literature to help them report on topics of interest to their audiences.
Helping communities understand COVID-19
Every new disease brings with it many questions, myths, misinformation, and often leaves the public swaying to media influence. Because of the respect I have gained as a bridge between science and journalism as a CAB member for HIV prevention research, I was able to mobilize my journalist colleagues to discuss critical issues around reporting COVID-19.
Through a science café for health reporters and researchers, we were able to acquire information on COVID-19 and cross the Ts and line up the dots, separating the myths from the truth about the pandemic. We discussed how best to report without fanning stigma against certain societies and what to do about translation of English and scientific facts into the different local languages without misrepresentation, misplaced emphasis, distortion of perception, and eliciting wrong responses. For example, we agreed to refer to the coronavirus as “COVID-19” and not the “flu of the Chinese,” which was the common prevailing reference in local languages.
Using community partnerships to control the pandemic
As a representative of the media in the community advisory board for HIV prevention research, I have been called upon for guidance and direction in reporting health matters. It is the recognition of my contributions that informed my role in the COVID-19 science café. However, I feel that the country's response to COVID-19 is not taking advantage of such partnerships to help communities better manage the pandemic.
By involving communities fully and treating HIV prevention as more than a medical response, programs for prevention, care, treatment, and research in Uganda have been easily implemented through community-tailored measures. The COVID-19 response on the other hand has taken on a top-to-bottom approach where behavior changes are decreed, communities expected to comply, and security forces engaged in enforcing their implementation. Rather than owning the need to safeguard their own health, communities have responded with a lack of trust or sense of urgency.
The COVID-19 response in Uganda can be made more effective by encouraging communities to take responsibility and find home-grown solutions to keep healthy. The lessons on meaningful community engagement have already been learned. Through existing mechanisms such as the HIV prevention research CABs and networks with local leaders, the COVID-19 response can be transformed into a community-led and owned campaign.
Discovering the necessity for ‘meaningful community engagement’ in the face of the COVID-19 pandemic in Kenya
By Rose Mahira, community liaison officer, KAVI-ICR
Co-authors: Jane Ng’ang’a, community liaison officer, KAVI-ICR; Fredrick Oyugi, community advisory board member, Kangemi; Stephen Anguva, community advisory board member, Kangemi
Since the opening of a clinical research site in Kangemi in 2003, the Kenya AIDS Vaccine Initiative – Institute of Clinical Research (KAVI-ICR) team has built a strong relationship of trust with the communities in the surrounding low-income settlements. The nearly two decades long partnership has seen the establishment of a robust Community Advisory Board (CAB), a critical link between researchers and the community, which has enhanced HIV prevention research literacy and the willingness of community members to participate in HIV vaccine clinical trials.
Located on the outskirts of Nairobi, Kangemi, is home to nearly 100,000 people reliant on subsistent wages often earned by travelling long distances across the city to jobs that provide a daily wage. As the COVID-19 pandemic has progressed in Kenya, it is increasingly clear that the already vulnerable communities in Kangemi and other informal settlements are being hard hit by the measures that have been put in place to try to curb the spread of the disease. The countrywide restriction on movement and social gatherings has resulted in loss of income for many households. Many have also had their access to treatment for existing conditions interrupted. The requirement for regular handwashing with soap and usage of face masks in public presents a challenge, as many of the settlements have limited access to running water at home and for them the purchase of extra soap, water, and masks is too expensive.
In keeping with the principle of leaving communities where studies are conducted better off as a result of its research activities, the KAVI-ICR community liaison team was inspired to find innovative ways of helping the community find home-grown solutions to address the new challenges. In partnership with community-based organizations, KAVI-ICR established the Kangemi Family Support (KFS), which identifies and rallies support for the most vulnerable families. Bringing together the Ngao Society, Strings For Life Kenya, Betty Adera Foundation, and several individual well-wishers, KFS has mobilized food support for 45 households, 129 children, and 200 beneficiaries across Kangemi within the first two weeks of its existence.
In addition to supporting the identification of deserving beneficiaries, CAB members have used the food distribution rounds as an opportunity to educate the community on the importance of social distancing and maintaining high standards of hygiene to avoid COVID-19 infection. They have also conducted HIV vaccine research literacy and distributed relevant information, education, and communication (IEC) materials.
While the initiative has proved to be successful and continues to receive in-kind and moral support from friends and well-wishers, the KFS is not without challenges. Owing to the low income of most of the households, the community has largely looked to the team to provide face masks. Another major shortcoming has been the inadequate supply of IEC materials to educate the community on COVID-19. However, on the more hopeful side, the community has indicated a willingness to participate in COVID-19 vaccine trials if and when they do happen. This can only be attributed to the significant investment in time and resources that has been made over the years to develop a truly meaningful engagement with the community.
By Munashe Mhaka, sexual reproductive and health rights advocate, Africa free of New HIV infections (AfNHi) Youth Cohort
As I got off the call with Spiwe*, my heart sank, and my mind struggled to focus, knowing that my young friend could be in real physical danger and there was not much I could do about it. She had been enduring physical abuse at home for the past three months and had called to tell me she was thinking about ending her life.
Spiwe’s mother had remarried soon after the death of her father and she and her stepfather never saw eye to eye. Most of the time, their paths did not cross much because she was away at boarding school but following the reporting of the first case of COVID-19 in Zimbabwe, the government, like many other governments worldwide, took measures to curb the spread of the disease, including a nationwide lockdown. This meant that, unable to retreat to the refuge of school and without the excuse of going for church youth meetings, Spiwe, like many other victims of domestic abuse, was trapped with her abusers — her stepfather and her mother.
The outbreak of COVID-19 has seen a gigantic shift in the lifestyle of the entire globe. Since the disease is spread through respiratory droplets in the air at close range with an infected person and on surfaces, the World Health Organization (WHO) recommended measures to limit people’s physical interactions. Sadly, the restriction on travel, banning of social gatherings, and lockdowns have resulted in an increase of intimate partner abuse and domestic violence as women, children, and other at-risk persons are locked down with their aggressors. An upsurge of HIV transmission and unplanned pregnancies are expected as vulnerable individuals find it even more difficult to negotiate safe sex. The idle time from being out of schools and colleges is pushing young people deeper into drug abuse and risky sexual encounters, due to anxiety about the pandemic and personal vulnerability.
For my friend Spiwe, physical abuse is not the only trauma she has been enduring. Her stepfather has taken to sexually molesting her every night her mother is away on night duty at the hospital. Her phone call was to let me know that she was considering ending her life because she could not take any more physical and emotional pain. Fortunately, I was able to convince her to call a hotline where she could get counselling and possibly options on how to get to safety.
The attention and resources devoted to the COVID-19 response has shifted community engagement away from conversations and existing initiatives that address other public health issues such as HIV, TB, domestic violence, and sexual and reproductive health. While the world focuses on preventing deaths from the new pandemic, we should not risk losing lives due to lack of appropriate medical, physical, and psychosocial support for conditions we already know exist.
* Name has been changed to protect this individual's privacy.
Community partnerships, innovations, and overcoming the challenges of conducting research in the context of a pandemic
By Gertrude Nanyonjo, social science coordinator and community educator for HPTN 084, Uganda Virus Research Institute-IAVI
When the COVID-19 first reached Uganda, the government put in place strict containment measures to slow down its spread in the country.
The presidential directive on a lockdown, which included restricted use of private vehicles, banning of public transport, closure of certain businesses, night curfews, and a ban on public gatherings had drastic effects on our social and economic lives. Among those who were hard hit were the participants and staff involved in different research activities implemented by the Uganda Virus Research Institute-IAVI (UVRI-IAVI).
All activities at the UVRI-IAVI site were halted on March 31, 2020 and the center was further directed by the Uganda National Council for Science and Technology (UNCST) to stop all screening, enrollment and follow-up visits. Fortunately, UVRI-IAVI received a waiver that allowed us to continue with the injection visits for volunteers of the HPTN 084 clinical trials. This is an ongoing study to evaluate the safety and efficacy of the injectable agent, cabotegravir (CAB LA) compared to daily oral tenofovir disoproxil fumarate/emtricitabine (TDF/FTC), for pre-exposure prophylaxis (PrEP) in HIV-uninfected women. Securing continued access to PrEP was particularly important to ensure the participants in the study continue to be protected against HIV acquisition.
Facing challenges to continuing research and community engagement
The government permission to continue with the HPTN 084 study came at a price. To maintain social distancing, the clinic retained a skeleton staff that only receives an average of six participants per day as opposed to the usual 12-14. With the majority of the staff working from home, we have had to use telephonic follow-up visits. Some scheduled visits were interrupted for participants whose only means of accessing the site was public transport. For these, the UVRI-IAVI program arranged for pick-up and drop-off for all participants from their respective villages including the Lake Victoria islands.
Unfortunately, the visibility of participants being picked and dropped by UVRI-IAVI staff created fear in the communities. The misconception that the UVRI-IAVI was a center for receiving COVID-19 patients resulted in stigmatization of HPTN 084 participants. Their communities and family members looked at them as potential carriers of the disease from the center to the community. The Village Health Team members, a critical link between the research team and the community, made us aware of the situation and facilitated meetings with the local council leaders and with small groups of community members. We also took advantage of the local community radios to provide correct information and address community concerns.
Another challenge we faced was the inability of volunteers to access the clinics for contraceptive refills. This was, however, addressed through mobile services by one of our clinic nurses who administered injectable contraceptives to women at their respective homes or at a UVRI-IAVI community hub based in Kasenyi. While the government anticipated loss of livelihoods and put in place a food distribution program, some of our participants in far flung villages have not been reached. These include sex workers whose means of livelihoods have been disrupted by the closure of bars and entertainment spots. For this vulnerable community, UVRI-IAVI is partnering with the Entebbe Municipality and local leaders to initiate a food distribution program.
Despite the challenges that have been brought about by the COVID-19 pandemic, we have experienced a great commitment by the communities with whom we conduct research to continue supporting HIV prevention research. This can only be attributed to the strong partnerships we have with local communities, and their trust in us to always put their best interests first.
Facing off a new pandemic to remain steadfast in the pursuit for a safe and globally effective preventive HIV vaccine
By Stephaun E. Wallace Ph.D., HVTN’s community engagement and social scientist and Aziel Gangerdine, HVTN director of communications
Since the World Health Organization declared COVID-19 a global pandemic on March 11, 2020 governments worldwide have been implementing strategies to curb the transmission of SARS-CoV-2, the infectious virus that causes COVID-19. Some measures have included countrywide lockdowns, travel restrictions, physical distancing, and self-isolation. Unfortunately, these measures have had adverse effects on social and economic life including widespread school closures, increases in unemployment rates, and increases in domestic violence1.
COVID-19 has also impacted the HIV prevention clinical research enterprise, affecting ongoing studies and delaying studies that were in the pipeline. While the focus of National Institute of Allergy and Infectious Diseases-funded HIV Vaccine Trials Network’s (HVTN) response to the pandemic has been to stop transmission and save lives, the network remains committed to finding a safe and globally effective preventive HIV vaccine to help end HIV.
In the context of this new pandemic, the strong bi-directional partnerships between the clinical trial site and the local community built over time have been instrumental in ensuring the safety of participants and staff while preserving the scientific integrity of each clinical trial. The sound relationships with communities and local public health authorities that have greatly facilitated innovation and advances in HIV biomedical research, now form the basis of implementation of COVID-19 response strategies. These strategies include ensuring that HVTN sites are well equipped for the critical work of implementing clinical trials even as a global pandemic persists.
Procuring and delivering globally sought-after specialized personal protective equipment (PPE) to clinical trial sites in 24 countries, spread across four continents, in a complex political and epidemiological climate was a herculean task. The HVTN COVID-19 response team led by Yunda Huang, Ph.D., principal staff scientist at the Fred Hutchinson’s Statistical Center for HIV/AIDS Research & Prevention (SCHARP) had to go through numerous global communications, endless negotiations with suppliers, and many hours of reading legal contracts. However, in a record three weeks from the moment the mission kicked off, the first-rate PPE was safely delivered to the sites.
COVID-19 has backed the global community into an unprecedented new normal, but the HVTN remains committed to the scientific journey for a safe and globally effective preventive HIV vaccine. Despite major breakthroughs in HIV prevention and treatment, there are an estimated 5,000 new HIV infections around the world every day. The need for a biomedical intervention that is accessible and can be taken to scale will help curb the impact of HIV/AIDS on communities. This need for an effective HIV vaccine remains, though COVID-19 has become a major focus of the research enterprise.
*This story originally ran in HVTN Community Compass Volume 20, Issue 1.
1Agha R, et al. The Socio-Economic Implications of the Coronavirus and COVID-19 Pandemic: A Review. Int J Surg. 2020.
The views and opinions expressed in this newsletter are those of the authors
and do not necessarily reflect the official policy or position of IAVI.