Causing disruption of HIV prevention research norms: What can activism do? – Morenike Ukpong

Causing disruption of HIV prevention research norms: What can activism do? – Morenike Ukpong

https://posteritymediang.com/causing-disruption-of-hiv-prevention-research-norms-what-can-activism-do/

By Morenike  Oluwatoyin Folayan 

Cults and Cabals exist in all societies. The research enterprise is not excluded. Fraternities exists in the research enterprise and many junior ones try to join these fraternities to enable them get privileged access to grants for their research work.

The lords of these fraternities try to sustain a rhythm of practice – they define research priority, and identify groups and individuals that get the choicest grants.

Sadly, the fear of the cabal makes many researchers silent –almost like coercive silence – and not push for changes that can otherwise improve the ethics of practice within the systems.

The HIV prevention research enterprise is not spared of this trait!

There are cults controlling every aspect of the life of the HIV prevention research enterprise – vaccine research, PrEP research, microbicide research, research involving adolescents. Some cults control the funding and some control the practice. Some cult members are more powerful than others. Some cult members are threats while others are work engines.

One group that can cause disruption in the norms of practice of the HIV prevention research practice is the activists. They can and should identify those practices in the research enterprises that are inimical to the safety and welfare of study participants, of communities that hosts research, and for governments that should institute practices that ensure access of its citizens to medicines and vaccines.

One area where disruption is needed is the issue of post-trial access to HIV prevention research products. Paul et al ( https://www.ncbi.nlm.nih.gov/pubmed/29487116) in their article published in the Journal of Medical Ethics showed clearly that over the years, the HIV prevention research enterprise has not done well to ensure sustained access to beneficial interventions for trial participants.

Sadly, without a disruption in the practice, the unsuccessful model will continue to be perpetuated. While research is not meant to address country level problems, it is expected that the huge resources invested in HIV prevention research could do more than providing tokenistic research outcomes.

Also of importance is the need to change perception about power dynamics and what partners can bring to the table.

Advocates have asked continuously for communities to engage with researchers in the design and implementation of research because they can add value to the research process.

Recently, Folayan et al (https://www.ncbi.nlm.nih.gov/pubmed/29490667) provided evidence that a structured engagement of community members can facilitate discussions about research designs. Community members consulted and engaged with HIV prevention research should not be limited to low literate members of the community. There are highly intellectual members of all communities who are educated enough to make critical inputs into the decision making process.

Community members engaged during research processes could be Professors, doctors, lawyers and a whole cadre of highly-educated persons who had spoken up for their community in the past and will willingly be glad to engage in conversations about research design and implementation for their community. We can do more by investing wisely the dollars spent in researching for products acceptable by community members.

Disruptions will come with unease, threats, funding cuts and a whole lot more for activists. There is nothing new about these phenomena. But we all as activists must and should be ready to cause the needed disruption to end an era of tokenism in the way community members are engaged in the design and implementation of HIV prevention research.

As the cabal members justify their gains in the enterprise – and justly so – we need to see that participants, communities and countries who are invested in the HIV prevention research enterprise equally benefit from their investment: respect for their persons, assurance of long term safety of their health, community benefits for study participation, and post trial access to study products by countries involved in the research. Anything less is tokenism.

Morenike Oluwatoyin Folayan, is of New HIV Vaccine and Microbicide Advocacy Society.

Building competency for adolescent girls: Why addressing pregnancy risk is critical – Morenike Ukpong and David Ita

Building competency for adolescent girls: Why addressing pregnancy risk is critical – Morenike Ukpong and David Ita

Pregnancy

 

By Morenike Oluwatoyin Folayan and David Ita,

HIV prevention intervention for any target population requires comprehensive programming. Programmes need to address biomedical, behavioural and structural risk factors. For adolescent girls, there is very little addressing a high HIV risk factor – rape.

The risk of rape is extremely high for girls in Nigeria. A study showed that about 34.1% of sexually active adolescent girls have their first sexual experience through rape. In Nigeria, rape increases the risk of girls to HIV infection just like it does in South Africa.

The mental distress associated with rape is not often managed due to the culture of silence about rape. This culture increases the high risk behavior of rape survivors – unprotected anal and vaginal intercourse, having multiple sex partners and increased engagement in transactional sex.

Rape survivors also suffer depression and low self esteem. In Nigeria, they often use coping strategies that limit their interactions with people and the public further increasing their risk of mental distress.

The risk for HIV infection for adolescent girls is further heightened if they get unwanted pregnancies, and continue to have sex with an infected partner during pregnancy and immediately post delivery.

The risk of engaging in sex during and immediately after delivery is high due to the need to get source for money to support themselves and their child. Pregnancy increases the risk of being a school dropout, having no skills to provide financially for self and a family suddenly trust into her care. Resorting to transactional sex as a way for making income during pregnancy and post delivery is therefore high.

Sadly, the national government does not recognize rape as a risk factor for HIV infection for adolescent girls in Nigeria. Neither does the country have a HIV prevention programme designed to acknowledge that unwanted/unplanned pregnancy is a risk factor for HIV infection for adolescent girls.

The HIV prevention programme in Nigeria should address rape as a structural risk factor for HIV in Nigeria. The risk for rape is high for adolescent girls in Nigeria. Rape increases the risk for pregnancy. Pregnant girls are often forced to marry identified sex partners – rapist or others. They drop out of school, become economically insecured, and are less able to negotiate safe sex.

Not having education beyond secondary school is one of the greatest structural risk factors for HIV infection for women and young girls. Sadly, 49% of females living in rural Nigeria and 22% of those in urban Nigeria have no education.

We need to break the vicious cycle of HIV risk resulting from unwanted adolescents’ pregnancy. Establishing programmes that empower young girls to make decisions about preventing unwanted pregnancy is highly needed in Nigeria.

Morenike Oluwatoyin Folayan and David Ita,

Why social disruption is needed for the research enterprise in Nigeria – Morenike Ukpong

Why social disruption is needed for the research enterprise in Nigeria – Morenike Ukpong

Prof Akin Abayomi, (left), keynote speaker and Prof MC. Asuzu at the conference

 

By Morenike Folayan

At the just concluded 5th Nigeria Global Health Trials Conference which held on the 30th and 31st of January 2018 at the Sickle Cell Foundation Centre, Idi-Araba Lagos, Dr Pelumi Adebiyi  challenged the over 250 participants present at the meeting to encourage social disruption of the research enterprise in Nigeria.

 

Just like many speakers who had made presentations before him, he challenged participants – many of whom were young researchers from multiple fields of practice – to promote inter-disciplinary collaborative research to redress health issues. This implies embracing diversity.

 

Questioning the question often results in the disruption of norms. It results in conduct of research that addresses specific needs. It moves people from convention to identifying more efficient and productive ways of getting things done. There will be shake ups, challenges, innovation and change.

 

 

For Dr Adebiyi, researchers in Nigeria will have to do things differently!

 

 

One of such new ways of doing things is moving from siloed research practices to research practices that embrace international collaborations (North- South; and South-South), multi-disciplinary collaborations, multi-site collaborations and academic-corporate collaboration.

 

 

Meanwhile, this same change had earlier being iterated by other speakers at the session.

Prof Folasade Ogunsola, one of the three Deputy Vice Chancellors of the University of Lagos, while speaking on North-South research collaboration, explained to participants how researchers can ensure such collaboration will be beneficial for the local community and country even when the agenda is driven by the North that brings the funding.

 

It is a process of growth in a relationship often initiated by the Northern partner, but it is one that can grow to a level of equity if the Southern partner builds his or her competency within the collaboration. The country benefits at the end of the day.

 

Similarly, Prof Babatunde Salako reiterated that collaboration should include partners outside the health sector. Health is impacted negatively by food insecurity, trade in health damaging products (tobacco, arms, toxic waste), poor governance, and wars and conflicts. A global health approach to the conduct of research implies conducting research that takes cognizance of the impact of these social, economic, cultural, behavioural, structural and biological determinants of health in appraising health and well being.

 

The 6th edition of the conference is planned to hold in January 2019 at Ibadan. Participants are looking forward to learning a lot more about the ‘how’ of causing social disruption in research. This conference seems to have focused on the ‘why’.

 

The conference was supported by the New HIV Vaccine and Microbicide Advocacy Society, the Global Health Network at Oxford University, UK, and POSTERITY MEDIA.

 

 

Folayan is of the New HIV Vaccine and Microbicide Advocacy Society, Nigeria

Profit and losses in the research enterprise: What difference can HIV prevention research efforts make? – Morenike Ukpong

Profit and losses in the research enterprise: What difference can HIV prevention research efforts make? – Morenike Ukpong

By Morenike Folayan

In the last several decades, there have been huge investments in the HIV prevention research enterprise. There have been investments on HIV research through the National Institute of Health (NIH), the European Union, Bill and Melinda Gates Foundation and a host of other donor agencies. These investments run into billions of dollars annually.

In the HIV prevention research enterprise, the industry provides employment for members – supportive personnel, laboratory, fieldwork, pharmacy, and administrative staff.

For ethical reasons, however, participants are described as volunteers because to position them otherwise could be considered undue inducement. Yet, the entire business empire is dependent on the participation of these volunteers.

Trial participants are expected to understand their role as purely altruistic, despite risks or benefits that may be associated with their ‘short-term engagement’ in the industry.

Frequently, they receive reimbursement for their transport and some compensation for time expended. These reimbursement and compensation packages are adjusted to local wage standards otherwise it would be considered as ‘undue inducement’ that may lead to coercion –  something considered unethical.

Paying research participants commensurately for the service they provide is also assumed to be unethical because the compensation of benefit remuneration model is assumed to promote voluntary and altruistic participation in research, and in so doing, create a research subject free to withdraw from research participation.

Volunteerism is assumed to enable participants to think critically about the research and to participate free from consideration of personal benefit and gain.

Unfortunately, this is rarely the case in many communities in Africa where HIV prevention research is conducted.

On the other hand, trialists’ interest is often the search for knowledge accompanied by interest in secondary benefits such as publications, career advancement, institutional recognition, and financial support for their research.

While scientific work is often regarded as benevolent contribution to the public good, the enterprise of research most definitely provides some with a source of income. In a clinical trial, employees are not framed as volunteers. They are paid commensurately for their time and effort. They profit from the research enterprise.

By using a labour market perspective, Folayan and Allman argued that clinical trial participants may be understood as workers and are entitled to payment for their labour.

This will open up spaces to consider ways to link global health to the economic empowerment of individuals. Recognizing volunteers not as participants but as ‘workers’ has the capacity to widen the discourses on bioethics as a relevant and powerful counterweight to the injustices of the world today.

The HIV prevention research enterprise can do a lot more to change the paradigm of practice. Community actors and representatives can be engaged as equals in the design and implementation of research.

Power differences between Northern partners invested in the off-shored research and local participants need to be acknowledged and addressed.  HIV prevention research are conducted in communities where poverty, race (whiteness of the HIV prevention research enterprise), gender differences and human right abuse are real and do inform participants’ engagement with research.

HIV prevention research can therefore not simply focus on its biological interventions: it needs to contextualize the social disparities that can otherwise skew the outcomes of the research like it has done for several years.

For an industry where net gains are required to significantly reduce the HIV incidence in Sub-Saharan Africa – the main host of HIV prevention research – paradigms of practice have to change. Community members have to be duly acknowledged as co-labourers in the industry and duly accorded the needed rights and respect.

Folayan is of the Nigeria HIV Vaccine and Microbicide Advocacy Society

Designing HIV prevention programmes for adolescents: Lessons from the A360 project – Morenike Ukpong

Designing HIV prevention programmes for adolescents: Lessons from the A360 project – Morenike Ukpong

 

 

By Morenike Oluwatoyin Folayan

The HIV prevalence in Nigeria has been reported to be stable at 3.0% for several years by UNAIDS. The National Agency for the control of AIDS under the leadership of Prof John Idoko had however continued to highlight that the HIV prevalence estimate for Nigeria was exaggerated; and that the national prevalence had likely reduced to something in the range of 1.5% to 1.8% over the years.

He derived this evidence from series of national HIV testing programmes conducted during the period he was the Director General of the Agency.

However, he could not establish this evidence. His justification for making the assertions were also fraught with bias – public HIV testing without a defined sampling framework makes recruitment of study participants skewed as people who know their HIV status may not join public HIV testing campaigns readily.

In addition, making a case that the HIV treatment programmes were failing to identify new cases in large numbers is not substantive evidence for the absence of HIV positive cases: it is public knowledge that there are many rural and hard-to-reach communities that have not been effectively reached with HIV programmes.

The planned National HIV indicator survey to be funded by PEPFAR, the largest indicator survey to be conducted in the world, will put an end to the debate. It is anticipated that data on HIV prevalence in a number of states in Nigeria will start rolling in by the end of the year. The national report should be out by 2019.

What does this however mean for adolescent girls 15 – 19 years of age?

Aboki et al, in a prior publication, had shown that the HIV prevalence among adolescents had continued to increase in Nigeria. This may be a result of an harvesting phenomenon though, as many children born with HIV are now reaching adolescence.

But more than that, it may also be an indication that a number of HIV negative sexually active adolescents are not receiving adequate HIV prevention interventions.

Ezechi et al had once provided evidence from their clinic data from the National Institute of Medical Research, Yaba, Lagos, that a significant number of adolescents receiving HIV treatment at the center were infected through sexual transmission in adolescence.

HIV prevention intervention for adolescents in Nigeria has been poorly planned and had received poor attention. The effectiveness of models to reach adolescents in Nigeria is not known and have not been properly studied.

The DREAMS project supported by PEPFAR in other countries in Africa is a structured HIV prevention programme targeting adolescents and young women. The focus of the programme was mainly to address structural barriers to accessing HIV prevention services. The project led to a reduction of HIV incidence by 12% to 40%. This suggests very clearly that to succeed with HIV prevention for adolescents and young women, national HIV prevention programmes need to address structural barriers – barriers to access to education, barriers to access to economic empowerment.

We also see very clearly from global evidence that a focus on biomedical interventions for adolescent girls will not turn the tide around. Reports of results from microbicide studies and PrEP access studies that disaggregate data show that adherence to use of biomedical HIV prevention products is challenging for adolescents. The same is the case with the use of antiretroviral drugs for adolescents living with HIV. Success with programmes on treatment as prevention focusing on adolescents may also be limited.

Evolving evidence suggest very strongly that for HIV prevention programmes designed to address the needs of adolescent girls in Nigeria to succeed, the programmes need to address structural drivers of the epidemic. The programmes need to improve their social life: HIV prevention access should be situated in a comprehensive intervention model that empowers then with skills for life and living; and with skills to improve their independency.

The A360 programme in Nigeria is a good example of a programme to model a comprehensive HIV prevention intervention programme for adolescents after.

The A360 programme, hosted by the Society for Family Health and funded by Bill and Melinda Gates and the Children Investment Fund Foundation, promotes access of adolescents 15-19 years to contraception.

This is a new project in Nigeria with all the potentials for community uproar and resistance due to religious and cultural upheavals about adolescents’ access to sexual and reproductive health services. Despite these risks, the project is working and working well.

The project learnt to integrate contraception access within a model that addresses the social risk for adolescents’ pregnancy – economic empowerment; active engagement of adolescents during their spare time; and motivation for change through intense peer group education and one-on-one counselling.

The planning and implementation of the entire programme within communities and states allow for excellent community engagement and stakeholder involvement including involvement and project ownership by policy makers. Contraception services is introduced and provided for girls who understand the need for this having undertaken skills building and motivational classes. Those who access services also become the ones who recruit peers for the services. The model allows for fast recruitment of peers to access services. Multiple success stories about how lives have changed have been documented on the project.

Designers and implementers of HIV prevention programmes in Nigeria can learn from this experience.

There is little need to reinvent the wheel.

Formative research needs to be conducted so that HIV prevention projects targeting adolescents can understand the specific community context needs of the adolescents.

It is important to understand that adolescent girls are not homogenous. There are interventions appropriate for adolescents based on their culture, geographical locations, age segmentation, marital status and a whole lot more confounders. Understanding these confounders and addressing them through the mix of a combination of interventions identified using a human centre design approach will result in meaningful impact.

The global goal for eliminating HIV as a global crisis by 2030 is near the corner. Nigeria will fail to meet this target if drastic changes are not made to the way it manages its HIV programmes – treatment and prevention.

We can make it if we try.

Morenike Oluwatoyin Folayan, is of New HIV Vaccine and Microbicide Advocacy Society.

Clinical Trials: Community members make the case for engagement as an ethical imperative in infectious disease epidemics – Morenike Ukpong

Clinical Trials: Community members make the case for engagement as an ethical imperative in infectious disease epidemics – Morenike Ukpong

clinical trials
Community members insist engagement is an ethical imperative in clinical trials during infectious disease epidemics

 

By Morenike Oluwatoyin Folayan

There are concerns raised about the social value of conducting research in such situations like the Ebola epidemic in West Africa where the infectious disease epidemic resulted in high mortality and morbidity associated with Ebola.

These concerns ignited debates on the justification for the conduct of randomised placebo-controlled trials, prioritisation of resources, compassionate access to unapproved therapies, and the balancing of research and public health action.

There were also discussions on how the histories of civil war and political violence will affect the epidemic response including making appropriate choices about clinical trial design.

Responding to these concerns, several articles were written including normative commentaries, empirical research; and substantive guidance documents were developed by researchers and public health practitioners alike.

While the multiple debates had shared the perspectives of researchers- clinical trialists, social scientists, academics, bioethicists – there has been little heard from communities themselves about their perspective on the issues.

Folayan and her colleagues [1] therefore conducted an extensive consultative process with community members in West Africa, including persons involved with Ebola clinical trials in West Africa, with the aim of reaching consensus on their perspective of what type of research should be priorities and appropriate clinical trial designs during such epidemics like that witnessed during the Ebola epidemic in West Africa.

One of the consensuses reached was that during an infectious disease outbreak, research studies that focus on mitigating suffering in the present and those that seek to identify means of prevention in future epidemics are those that need to be prioritised.

Also, where there are various unknowns and uncertainties about the utility of existing medications and the existing clinical care pathways and systems to cope with an epidemic, research that explored improved or novel ways to address disease conditions and health systems challenges that would provide affected persons with the best chances of survival should be prioritized during the phase of an epidemic when fatality is high.

In addition, researchers should use study designs that increase the prospect of including affected populations as study participants, and should make it possible for the participants to access therapy with known or unknown efficacy, when or where available.

Finally, research conducted during a self-limiting infectious disease epidemic should be designed in ways that makes it flexible enough to address emerging urgent community needs of decreasing mortality and morbidity.

Also, community members opined that community engagement should not be precluded from any clinical trial to be conducted in West Africa during an infectious disease epidemic.

The engagement helps to increase the validity of research; improve research measures, interpretations, and knowledge translation and dissemination; and provide a platform for vulnerable and excluded communities to be included in decision-making about the research.Doing so can facilitate research and community ownership of the research; and stimulate interest as members accept the community response as their own home-grown efforts/contributions to address the peculiar health-related challenges affecting members of the community.

There is no presumptive justification for the exclusion of communities in the design, implementation and monitoring of clinical trials conducted during an infectious disease epidemic outbreak. Engagement models that facilitate collaboration rather than partnership between researchers and the community during epidemics; and fast-track context specific best practices, are appropriate.