CIVIL SOCIETY ORGANISATIONS NEED TO BE HELD ACCOUNTABLE FOR THE HIV RESPONSE – Morenike Folayan

CIVIL SOCIETY ORGANISATIONS NEED TO BE HELD ACCOUNTABLE FOR THE HIV RESPONSE – Morenike Folayan

CIVIL SOCIETY ORGANISATIONS NEED TO BE HELD ACCOUNTABLE FOR THE HIV RESPONSE

 
CIVIL SOCIETY ORGANISATIONS NEED TO BE HELD ACCOUNTABLE FOR THE HIV RESPONSE
How do you call others to be accountable when you yourself are not accountable? To whom are Civil Society Organisations accountable too if we other stakeholders are accountable to you? These were some of the questions that were reiterated by some of the over 350 participants who attended the 2 days 2017 CSO Accountability Forum meeting that held on the 12th and 13th of November 2017 at Rockview Hotel, Abuja. The meeting was organized by Civil Society for HIV/AIDS in Nigeria (CiSHAN), Network of People Living with HIV and AIDS in Nigeria (NEPWHAN), New HIV Vaccine and Microbicide Advocacy Society (NHVMAS) and Treatment Action Movement (TAM).
CISHAN took these questions serious. CISHAN is the umbrella body of Civil Society Organisations working on HIV and AIDS response in Nigeria. The credibility of the organization took a serious bash some years back when it was held unaccountable for management of the GFATM funds it received. Prior to that, it also faced credibility problems resulting from leadership tussles that also had to do with financial misappropriation. A number of Civil Society Organisations have also not done well in terms of been financially accountable for grants received.
At this meeting, CISHAN and its partners spent the first day discussing in-house on how to address its accountability to the HIV response. Two types of CSO were identified – those who work for the community as their advocate and voice who can serve as watchdogs, and those who were contractors and implementers of the resources. Forum participants acknowledged the need to make distinctions between these groups of CSO, and explore how to hold either of these two CSO accountable.
In an attempt to regulate itself, CISHAN developed and presented the first draft of the CSO Accountability Framework at the meeting. The draft framework is a short 5 chapter document (13 pages) with a section that highlights the seven guiding principles, a chapter describing the standards to which CSO under the aegis of CISHAN shall be held accountable too, the last three chapters describing the one HIV and AIDS action framework. An appendix will include the monitoring tool to assess the level of stakeholder investment in the HIV response in Nigeria and their efforts at meeting the 2020 and 2030 global targets to which the country is a signatory. Annual reports on findings on the field shall be compiled and released every World AIDS Day by CISHAN.
Participants present at the meeting were happy with this development. The document is to be shared widely among stakeholders for their comments and inputs. A final document will be produced by March 2018. CSO monitoring of the HIV response in Nigeria shall commence in June 2018.
At the last plenary session of the meeting, CISHAN committed to finalizing and deploying the Accountability Framework to the various states for utilization. The supports of the partners were solicited to ensure that the utilization was hitch free. FHI360 responded on behalf of the partners in the affirmative. The draft document can be accessed at: https://nhvmas-ng.org/wp-content/uploads/2017/11/CSO-Accountability-Framework.pdf. Comments to be sent to the CISHAN secretariat.

Echoes from South Africa – relevance to Nigeria: Standard of Care for clinical trials

Echoes from South Africa – relevance to Nigeria: Standard of Care for clinical trials

(New HIV Vaccine and Microbicide Advocacy Society)

 

Civil Society organisations working for HIV vaccine development and access recently held a three days meeting leading up to the two days summit to discuss standard of care in HIV Prevention in the era of Pre-exposure prophylaxis (PrEP). The pre-summit was held from the 31st of October and 1st of November 2017 to enable civil society organisations with representatives from South Africa, Nigeria, Kenya, Uganda, Zimbabwe and Malawi, to articulate their position on the issue. The position of the CSO was presented during the summit held on the 2nd and 3rd of November 2017. Both meetings were held in Cape Town, South Africa.

 

At the meeting, members of the civil society organisations argued that clinical trial participants are at the center of HIV prevention research. They must be provided with a level of care that includes all the known effective HIV prevention tools irrespective of what the national guideline says. The researchers should provide the participants the highest standard of care and that will provide opportunities for advocates to continue to engage the government for public rolls out of these products. Sadly an effective tool like PrEP is only access through demonstration projects in Africa, yet Sub-Saharan Africa is the hub of the HIV epidemic crisis. Access to PrEP only through demonstration projects only further widens the inequity problem of access to health care in the region. Government needs to continue to engage with civil society organization on how to address PrEP access issues. Post-trial access was identified as a big issue for the community- what happens to the participants when the demonstration study is concluded?
The position of the civil society was corroborated by ethical and legal perspectives and discussions on the issue. Legally, access to appropriate standard of care is a human right issue. The law requires that the government must provide reasonable standard of care that is feasible and within the financial capacity of the country especially for the most vulnerable populations. Ethically, the right thing to do during clinical trials is that the highest standard of care should be provided for the research participants irrespective of the national guidelines. In South Africa, the recruitment of participants at one site for the ongoing HVTN 702 vaccine trial was halted to await the outcome of the summit on what the recommended standard of care to adopt for the trials.
Sadly, despite the World Health Organisation’s recommendation on access to PrEP for all those at substantial risk of HIV acquisition including women, scientists in South Africa were still willing to withhold access of women to PrEP based on the failure of women to use PrEP during two international trials, and the result of a meta-analysis of PrEP data that demonstrate uncertainty on PrEP efficacy for women. These restrictive conservative view of scientists further highlights the need multi-stakekholder discussion and engagement in decision making on behalf of community members.
The summit resulted in a paradigm shift as the National Institute for Health, the major funders of HIV prevention research, including HIV vaccine research, demonstrated commitment to the provision of PrEP for the trial participants engaged in all the clinical trials in South Africa. Modalities for delivery will be discussed through community engagement.
The meeting highlights critical lessons for Nigeria. While there are no HIV prevention clinical trials being conducted in Nigeria currently, Nigeria is a potential site for implementation study of HIV prevention research including HIV Vaccine research. The Walter Reeds Institution in Nigeria are putting together multiple preparatory studies for conduct of future HIV vaccine research. The National Institute of Medical Research, Lagos is also very interested in the conduct of HIV Vaccine research in collaboration with the Medical Research Council of South Africa. The Institute of Human Virology, Nigeria, had also hosted a demonstration project for HIV Vaccine research in the immediate past. It is very important for Nigeria to take proactive steps in developing its own guidelines on standard of care for HIV prevention research. The New HIV Vaccine and Microbicide Research lead the process of developing a Standard of Care guideline in 2004 following the PrEP controversies that ensued in the country back them. It is time to review and update this document in view of the evolving development in the field of HIV prevention research.
PrEP is currently accessed by sero-discordant couples in Nigeria through the ongoing research implemented by the National Agency for the Control of AIDS through its partners at Calabar, Anambra and Jos. PEPFAR, through USAID and CDC in Nigeria, will also be providing PrEP to populations at high risk for HIV infection at its project sites. Persons at high risk for HIV have a right to access PrEP in line with the 2016 national guideline on the use of antiretroviral drugs in Nigeria. Sadly, there is no antiretroviral drug licensed for use for PrEP in Nigeria thereby creating inequity to PrEP access for those who need it and want it in Nigeria. Also, key stakeholders are currently not trained on its prescription, monitoring and use. The essential drug list on Nigeria needs to be updated to include drugs found effective for the prevention of HIV infection also. We advocates in Nigeria shall continue to push and advocate for the roll-out of PrEP in Nigeria as a legal and ethical imperative for the respect of the human rights of Nigerians.
Echoes from South Africa - relevance to Nigeria: Standard of Care for clinical trials
 
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ACCOUNTABILITY NEEDED FOR THE HIV RESPONSE-Morenike Folayan

ACCOUNTABILITY NEEDED FOR THE HIV RESPONSE, By Morenike Folayan

Civil Societies in Nigeria, under the aegis of the Civil Society for HIV/AIDS in Nigeria (CiSHAN), Treatment Action Movement (TAM), Network of People Living with HIV and AIDS in Nigeria (NEPWHAN), New HIV Vaccine and Microbicide Advocacy Society (NHVMAS) – came together to host a 2 days meeting focused on promoting accountability of stakeholders, including that of civil society organisations – to the HIV response. This was the second of these annual event. For 2017, the theme was Integrated HIV-TB Response in Nigeria: Moving from Rhetorics to Action. The meeting held on the 12th and 13th of November, 2017 at the Rockview Hotel, Abuja
The meeting had in attendance over 350 participants. The national government, the US government, Non-governmental organisations working in the HIV and TB field, and implementing partners were asked hard questions about the HIV response. One of the main debates – sadly a carry over from the 2016 accountability forum – is the need to remove the user fee associated with access to life saving antiretroviral drugs. The community of people living with HIV highlight the significant limiting impact of these user fees on access to care. There are also reports on large numbers of people living with HIV starting to fail their first and second line drugs with no hope of access to salvage therapies simply because the user fees hinder their access to HIV services.
The Director General of the National Agency for the Control of AIDS noted that HIV treatment is not considered an act of kindness or charity; the Nigeria government considers it an obligation and responsibility. The Federal Government through the Ministry of Health, had committed to the removal of user fees following advocacy to his office as an outcome of the 2016 CSO Accountability Forum. The US Government in the person Mr. David Young (US Ambassador) also acknowledged the importance of eliminating barriers to access to HIV treatment including removal of the user fees. It therefore remains unclear why implementing partners continue to hinder access of clients to HIV treatment by imposing fees. One thing was clear at the forum – personal bias seem to influence the national response. One of the speakers felt strongly that user fees should continue as what was free was not appreciated. This caused a major uproar at the meeting.
Domestic funding needs to be mobilized to improve the current response. The Nigeria government also has to be held accountable for the $66 million dollars to be invested in Nigeria by the US Government over the next 2 years – inclusive of the $6million to be spent on the population based survey to rebase the HIV epidemic in Nigeria – towards eradicating the HIV epidemic in Nigeria. There was consensus that CSO have roles to play as whistle blowers. They also should be demanding that the government increase investment in national development inclusive of strengthening the national health systems, and holding stakeholders accountable as independent organisations who serve as the conscience of the HIV response.
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Why do we still not have PREP for all in need of it in Nigeria?

Why do we still not have PREP for all in need of it in Nigeria?

Participants at the #CSOAccountabilityForum question the DG NACA:

Q: Why do we still not have PREP for all in need of it in Nigeria?

R: We understand that PrEP is an important prevention tools but the country is prioritizing putting more people on treatment first. However, NACA is committed to providing PrEP for sero-discordant couples only, but will liaise with other programme/funders in Nigeria on roll out of PrEP for other population who needs it- Our Priority for now is non treatment. Dr. Saliyu, DG- NACA , At the CSO Accountability Forum 2017. Naca Nigeria

A Network for Ethics Committees Operating in West Africa has been launched

A Network for Ethics Committees Operating in West Africa has been launched

 
Today the 27th of September 2017, representatives of ethics committees working in countries in West Africa launched a network that would serve as a platform for ethics committees operating in West Africa to work together.
The launch of the Network was an outcome of the three days training on review of research protocols for infectious disease outbreak management organized by The West African Taskforce for the Control of Emerging and Re-emerging Infectious Diseases (WATER)[1]. The training was funded by the Open Society Initiative for West Africa (OSIWA) and technical support provided by the New HIV Vaccine and Microbicide Advocacy Society. The training was held in Senegal from the 25th to 27th of September 2017.
Discussants identified that the socio-cultural, political, economic and health contexts of West Africa are different from those of other regions. Also, most research in the region are donor funded. These issues have implications for ways research ethics principles should be interpreted and implemented in countries in the region. Participants also identified the need to harmonise ethics committees’ practices to avoid continued exploitation of governments, communities and individuals in the region. We agreed that as the HIV epidemic was the impetus for improved ethical practices in research conducted Eastern and Southern Africa, the Ebola epidemic is and should serve as the impetus for improved ethical practices in research conducted in West Africa.
The Network shall serve as a platform through which the region can deliberate and reach decisions that guides in-country operations of the ethics committees in the region. It will also address the capacity building needs for not only ethics committees but other stakeholders that the ethics committee serves.
Members of Ethics Committees from Gambia, Ghana, Guinea, Liberia, Mali, Nigeria and Senegal were represented at the Inaugural meeting. The Network shall be led by Gloria Mason, a Liberian, Harvard trained Bioethicists, and the Coordinator of the National Research Board of Liberia.
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What has HIV got to do with contraception? Dr. Morenike Ukpong

 
I know that women are at increased risk for HIV infection in Nigeria. I also know that there are lots of efforts to prevent unwanted pregnancy irrespective of HIV status. Birth control is critical to population control and national development. Unintended pregnancy is also a common threat to the well-being and lives of women and girls. Many governments in developing countries, including Nigeria, are embracing birth control programmes including those that increase access of girls and women to short and long term contraception. Many of these same countries that have high fertility rates like Nigeria, are also battling with large populations of persons living with HIV.  But then, what is this thing about HIV and contraception use.
In 2017, the World Health Organization issued a public statement about of progestogen-only injectables such as Depo Provera (s for protection from getting pregnant for the next three months) and norethisterone enanthate [NET-EN] following a meeting convened in December 2016 to look at the evidence on the possibility of increasing HIV risk following the use of hormonal contraception. WHO recognized this as a critical one, particularly for sub-Saharan Africa, where women have a high lifetime risk of acquiring HIV, and hormonal contraceptives constitute a significant component of the contraceptive method mix.
The statement identified that there is a risk for HIV acquisition through the use of progestogen-only injectables (norethisterone enanthate [NET-EN] and depot medroxyprogesterone acetate [DMPA, intramuscular or subcutaneous]) for women at high risk of acquiring HIV. However, the advantages of using these methods to prevent unwanted pregnancies generally outweigh the possible increased risk of HIV acquisition.
There is currently no clinical trial derived evidence to show that any contraception, including progestogen-only injectables, increase the risk of acquiring HIV infections. However, multiple low to moderate evidence generated through secondary analysis of data collected for other research purposes but analysed to test possible associations between risk of HIV infection and use of contraception suggest that this association is plausible.  The ongoing ECHOO study being implemented in South Africa will provide some evidence by 2019 on whether DMPA use increases a woman’s HIV risk or not.
Women needs to be educated about the choices they make about use of contraception. The following hormonal contraceptive methods can be used without restriction: combined oral contraceptive pills (COCs), combined injectable contraceptives (CICs), combined contraceptive patches and rings, progestogen-only pills (POPs), and levonorgestrel (LNG) and etonogestrel (ETG) implants as they are safe for use by anyone. Intrauterine devices (IUDs; levonorgestrel [LNG] and copper) are not associated with an increased risk for HIV acquisition also.
For women living with HIV, it is important to discuss contraceptive options also. Most anti-retroviral treatments do not interact with family planning drugs. Some family planning implants contain a hormone called etonogestrol that interacts with an ART called efavirenz.  If you are living with HIV, it is wise to talk with your doctor or clinic about your family planning method. You can ask if there is any risk of your method interacting with your ART.
 
To keep track on information about HIV and hormonal contraception, join the HC-HIV advocates’ listserv. Write to Margaret Happy (mhappy@icwea.org) for listing on the listserv.
 
 
 
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