AIDS Vaccine Research Brings Hope to Underserved Ugandan Fishing Communities
HIV vaccine research efforts in underserved fishing communities on the shores and islands of Lake Victoria have led the International Aids Vaccine Initiative (IAVI) to inform and mobilize numerous implementing partners to address a wide range of social and health problems.
The search for a safe and effective HIV vaccine identifies and engages those most in need to understand their disease burden, collect scientific data to inform suitable vaccine design and prepare them for participation in future HIV vaccine safety/efficacy clinical trials. This research has also revealed the unmet healthcare and daily living needs of millions of men, women and children who are living and working in fishing communities around Lake Victoria. While research discoveries ultimately raise awareness for the region and can inform healthcare policies and strategies, the conduct of research can also directly improve the quality of both healthcare as well as day-to-day life for those communities that are hosting HIV vaccine research. IAVI routinely engages and mobilizes policy makers, civil society and a range of implementing partners to link these participating communities to essential healthcare and HIV services while improving infrastructure by building latrines, harvesting rainwater, and investing in small-scale agricultural projects.
The fishing communities on the shore and islands of Lake Victoria, site of the first AIDS cases in Uganda in 1982, are some of the most isolated and marginalized in East Africa. These fishing villages are widely scattered across numerous island and shore locations in Uganda, Kenya and Tanzania. It is difficult to estimate the size of this population since many of them are migratory and live in small, undocumented and informal settlements in remote locations on the world’s second-largest lake. Today, fishing communities remain one of the highest-risk groups for HIV infection. Yet, findings from IAVI’s work on Lake Victoria reveal that for many members of fishing communities, poverty related stresses in addition to other social and economic issues tend to overshadow the real possibility of contracting HIV. Drowning, diarrheal diseases, respiratory infections, parasitic infections and maternal/child mortality are some of the daily stresses that fishing communities are concerned about before they consider HIV as a threat.
Since 1982, the fishing community population has continued to grow while the HIV epidemic remains unchecked. Little has been done to successfully target fishing communities in the region’s otherwise comprehensive response to the HIV epidemic as evidenced by IAVI-supported studies in Uganda. AIDS vaccine research led IAVI and its partners to work closely with organizations to both engage with and understand underserved fishing communities as part of the early efforts in Uganda to collect credible data on the HIV epidemic. IAVI-supported research discovered these fishing communities are vulnerable to HIV as well as a multitude of other diseases and public health concerns. In 2010, IAVI supported the Uganda Virus Research Institute (UVRI) in the first observational study to demonstrate Lake Victoria’s fishing communities have HIV prevalence rates over 4 times higher (26.7%) than the general population and, even more alarming, a new HIV infection rate found to be 8-10 times higher than in the general population1.
Multiple social, economic and cultural factors shape lifestyles in fishing communities including their vulnerability to HIV transmission. Hopelessness, a risk-taking culture, alcoholism, drug abuse, transactional sex and a lack of access to prevention and treatment further contribute to high rates of new HIV infection and AIDS burden. Research teams have also recorded large numbers of women, adolescents and vulnerable children living in extreme poverty with limited access to health care, HIV treatment and care, food security, transportation, clean water and sanitation. HIV also takes a toll on the communities and families. The data suggested that women in fishing communities are at a particularly high risk, as they are often in a subordinate economic and social position and must turn to transactional sex for survival. The power dynamics in these exchanges favor men and can make it more difficult for women to negotiate safe sex2.
Much of the research in Uganda, conducted by IAVI partners the Medical Research Council /UVRI and the UVRI-IAVI HIV Vaccine Program, has proved to be instrumental in identifying and addressing the HIV epidemic and the larger public health needs of this at-risk population. In the districts where IAVI-supported research is being conducted, innovative strategies have contributed to the improved delivery of services to remote island-based communities through partnering with a range of implementing partners to deliver family planning services, HIV counseling and testing (HCT), voluntary medical male circumcision (VMCC), prevention of mother to child transmission (PMTCT) and the provision of basic health services. By building on this pre-existing network, IAVI also established more robust referral systems and mechanisms for connecting people living with HIV to the care they need. Based on study recommendations and subsequent emerging discussions, IAVI has also supported the Uganda AIDS Commission and the Ministry of Health to develop strategies for accelerating the provision of healthcare services and combination HIV prevention to fishing communities.
IAVI and partners continue to work with healthcare and HIV service providers, local authorities, international NGOs and grassroots organizations to improve access to healthcare and HIV services to these struggling fishing communities where few had existed before. Through these efforts, IAVI partners have built trust with these communities – an ingredient that is crucial to effective and sustained community engagement. IAVI’s work with civil society organizations, such as the Ugandan Fisheries and Fish Conservation Association (UFFCA) has ensured that the Ministry of Health, the Uganda AIDS Commission and district health officials are more aware of the gaps in health service delivery to fishing communities.
IAVI, in partnership with the USAID-funded Uganda Health Marketing Group (UHMG), has helped service providers to better understand the magnitude of gaps in health services and to better reach those most at-risk communities with a range of health services including family planning, HIV prevention, malaria prevention and clean water solutions. IAVI has also worked to improve access to health services at the grassroots level by supporting the training of village health teams (VHT) who serve as the community’s initial point of contact for health across three districts and 12 villages. This strategy, adopted by Uganda in 2001, addresses a shortage of doctors and peer leaders from fishing communities. Training provides VHTs with the knowledge and skills to provide both HIV risk reduction counseling and basic first aid, as well as the ability to establish reliable referrals to the next level of health services as needed. Additionally, the engagement of VHTs and peer leaders has built a wider awareness and understanding of HIV and HIV prevention research. IAVI has also established counseling services that address high rates of both alcohol and substance abuse – both proven to contribute to HIV’s spread amongst members of fishing communities.
IAVI cultivates close links with government officials and policymakers in Uganda to further impact these underserved fishing communities. IAVI is a member of the National Prevention Committee in Uganda that is responsible for ensuring the integrated and coordinated development of Uganda’s HIV prevention strategic framework. The IAVI-supported national Fisherfolk Summit in December 2013 brought key stakeholders to discuss strategies to accelerate the prevision of HIV combination prevention to fishing communities. This groundbreaking summit ultimately led to the development of a roadmap to guide service providers in better targeting HIV/AIDS services to fishing communities. The roadmap highlights a need for integrated outreach services, community involvement in intervention design, improved access to health centers at key hubs, expanded healthcare beyond HIV/AIDS services and sustained dialogue with policymakers.
IAVI’s multi-front approach has also supported campaigns to raise visibility more broadly to facilitate direct engagement with fishing communities and foster discussion about stigma and perception with people from outside the community. A Knowledge Management and Communication Capacity initiative (KMCC) supported a television series aired in December 2013 to increase the public understanding of fishing communities and their challenges related to health and HIV. The series, aired on Minibuzz, a daily current events television program in Uganda, engaged men and women from fishing communities to openly discuss behaviors and attitudes towards HIV and also provided information related to treatment and prevention. Regionally, IAVI has supported the development of the Lake Victoria Consortium for Health Research (LVCHR) that also includes research groups in Tanzania and Kenya. The LVCHR aims to better understand the HIV epidemic on Lake Victoria and to create a research platform that could be utilized for HIV prevention, research as well as research into other communicable and non-communicable diseases.
More than 30 years into the pandemic, it is clear that a vaccine is essential to both achieve and sustain the end of AIDS. Clinical research efforts to develop a safe, effective, preventive HIV vaccine are already benefiting those most in need by producing dividends that extend far beyond the vaccine search.
1 Kiwanuka et al. 2013. “High HIV-1 Prevalence, Risk Behaviours, and Willingness to Participate in HIV Vaccine Trials in Fishing Communities on Lake Victoria, Uganda.” Journal of the International AIDS Society. 16 (March 2013): 18621. http://www.jiasociety.org/index.php/jias/article/view/18621.
2 MacPherson EE1 et al. 2012. “Transactional sex and HIV: understanding the gendered structural drivers of HIV in fishing communities.” J Int AIDS Soc. 2012 Jun 14;15 Suppl 1:1-9. doi: 10.7448/IAS.15.3.17364. http://www.ncbi.nlm.nih.gov/pubmed/22713352