In 2021, ITPC continued making a positive impact on people’s lives, backed behind the scenes by solid expense management and wise use of resources. We deliver strong value for money.
Our financial operations stood firm in the face of the COVID-19 assault due, at least in part, to our data-driven decision-making and clear focus on CLM and advocacy within the three strategic areas outlined in this annual report. Holding it together was the dedication and shared sacrifice of our global activist community members (including our ITPC regions), lean staff and Board members.
It was a climate in which we expected large budget uncertainties and revenue shortfalls. Due to our prudent expense mitigation measures, such minimizing expenses we were able to offset shortfalls and ended up closing the year with an operating surplus.
Despite the COVID-19 pandemic, 74% of donor funding went to direct program costs and to our partners on the ground through strategic grants.
amfAR’s TREAT Asia program worked with partners to initiate two Community Treatment Observatories (CTOs) in two sites in India and Indonesia, and two national partners: the Community Network for Empowerment (CoNE) in India and Peduli Hati in Indonesia, with the International Treatment Preparedness Coalition (ITPC) as a technical partner, which assisted in training the national partners in India and Indonesia and TREAT Asia staff, and currently hosts the CTO databases of the two sites on its online portal.
Each organization carried out data collection from February/March to December 2021, during the COVID-19 pandemic. This report presents the findings and analyses of the data to help guide the ongoing implementation of the CTOs and to inform advocacy for HIV and HCV service improvements for people living with HIV (PLHIV) and people who inject drugs (PWID).
ITPC is excited to provide a preview of a slate of upcoming resources on Community-Led Monitoring (CLM) that we will be launching this summer. With so many new tools, videos, events and speeches coming up, please mark your calendars for the following dates!
Wednesday 22 June – Launch of our Technical Brief, “FROM INSIGHTS TO EVIDENCE”, a guide to developing quantitative and qualitative indicators for use in CLM programs. In addition to indicator development methodology, this brief will feature examples of CLM indicator questions. Download the CLM Technical Brief here.
Monday 4 July – Publication of our 2nd Technical Brief, “PRECISION IN A PANDEMIC…”, a guide to ensuring high quality CLM data. This brief discusses techniques and approaches that are necessary for assuring that CLM data – and the resulting analysis and claims – stand up to scrutiny. Download Precision in a Pandemic here.
Monday 18 July – Publication of our 3rd Technical Brief, “CLM Data for Decision-making’. If CLM data is collected and analyzed, but never used to inform programmatic or funding decisions, then we are falling short on the potential of CLM. This brief explores how to leverage CLM data to make sure that the needs, perspectives and priorities of communities are used to inform change.
AIDS 2022:
ITPC will be present at AIDS 2022 in Montreal, Canada, from July 29-August 2. Stop by our booth in the Global Village or connect with our content virtually!
– Look out for a trio of short videos on Community-Led Monitoring to be launched throughout the conference.
– Tune in to see our Executive Director, Solange Baptiste, deliver a plenary address on Community Led Monitoring on Monday August 1, 2022 at 4:30pm local Canadian time.
For more details and how to stream online, click here.
Vuyo is responsible for the procurement of goods and services for ITPC global programmes and projects.
She is a highly experienced procurement and operations management professional with more than 15 years of experience in all aspects of administration, procurement and finance work within international NGOs. She also has a degree in Business Administration and is a member of the Chartered Institute for Procurement and Supply.
Krista is the Acting Citizen Science Lead at ITPC, leading ITPC’s Watch What Matters strategic focus area with a particular focus on Community-Led Monitoring.
Her philanthropic experience includes serving as Project Director of the Global Health Financing Initiative of the Open Society Foundations (OSF) in New York City, where she worked to channel funding toward the health and human rights of key and vulnerable populations, and as a Senior Program Officer on HIV/TB Advocacy at the Bill & Melinda Gates Foundation.
Previously, she was Senior Policy Advisor at MPact (Global Action for Gay Men’s Health and Rights) and the Manager of International Policy at AIDS Project Los Angeles, mentoring emerging advocates and working to advance the health and rights of gay men and other vulnerable groups, particularly in PEPFAR policy and legislation.In addition to policy and advocacy work at the UNAIDS Programme Coordinating Board (PCB), the UN General Assembly, PEPFAR COPs negotiations and U.S. Congress, her programmatic experience includes implementing HIV, TB, malaria, and maternal and child health programs in Benin and Zambia. She has served as Alternate Member of the Private Foundations Delegation to the Board of the Global Fund to Fight AIDS, TB and Malaria.
Jelena Bozinovski is our acting Community data & Advocacy manager. Jelena is managing projects under Watch What Matters strategic focus area, primarily CLM Technical Support under UNAIDS, Global Fund, FIND and other donors and partners.
She joined the team with 13 years progressive experience as a Programs & Grants management professional across the globe in implementing a wide spectrum of activities (competitiveness development, judicial reform & government accountability, emergency response, health, protection, WASH, education, NFI, nutrition, gender mainstreaming etc.) in Afghanistan, Syria, Netherlands, Jordan, Turkey, Malawi, and Serbia. Jelena holds master’s degree in international relations from the University of Belgrade.She has been working with a wide spectrum of donors (USAID/OFDA, EU/ECHO, UN/UNICEF/UNDP/IOM, BMZ, DFID, DFATD, SIDA, Irish Aid, MOFA NL etc.) via INGOs world.
Communication and coordination are one of the stronger aspects of her work style and personality.Jelena originally comes from Serbia but has been based in Malawi since March 2020 with her husband, her 4-year-old daughter Zara and a baby boy Maxim.
Jelena is very enthusiastic and positive person, eager to work with people from various backgrounds and passionate about helping others, dancing and traveling.
Citizen Science, a ground-breaking, community-led project documenting real-time perspectives, experiences and advocacy priorities among people living with HIV in Malawi and South Africa. Citizen Science moves from models of ‘data extraction’ to ‘data democracy’, by combining community-led monitoring, community research, operational research, and a novel methodology called Life Mapping, which uses collaborative and participatory visual media tools.
Jalpa is managing the whole project including other components which includes technology research, data hub, a costing study, training partners via a community-led monitoring academy, supporting Community Advocacy Network comprising of 14 countries and best practice sharing.
Jalpa has an undergraduate degree in Pharmacy and a Post Graduate Diploma in Law from the UK. Her areas of passion and expertise are in the pharma-legal profession including human rights issues across Southern Africa. She specifically focused on HIV/AIDS, sexual and reproductive health, children’s rights, and access to medicines.
Jalpa believes in the power community education and advocacy in increasing access to affordable health care and medicines. Over the past 12 years, she has also been actively involved in an NGO – the Johannesburg Indian Women’s Association – as treasurer and executive member. It’s an organisation which raises funds to promote education, empowering women, and children.
Matahari Global, in collaboration with the International Treatment Preparedness Coalition, publishes the findings of an exercise undertaken in November 2021 to populate a mapping tool examining access the COVID-19 response in eight countries (Bangladesh, Liberia, Nepal, Nigeria, Peru, Somalia, Uganda and Ukraine). In “Data Gaps in the COVID-19 Response: Findings from a mapping exercise on access to COVID-19 technologies”, researchers examined access to vaccines, therapeutics, and diagnostics, as well as certain health systems elements.
We found:
Unmet vaccination targets driven by vaccine inequity
Vaccine access impeded by poor operational support.
No structured psychosocial support for health care workers.
No access to rapid self-tests, in contrast with the Global North.
Unsalaried community health workers – COVID-19 opportunity costs.
Question marks around access to new COVID-19 antivirals.
Lack of data on oxygen needs
Here’s what we think should happen next, in “Phase 2”
To interview rural health practitioners and WHO regional offices on access
to COVID-19 technologies in rural populations. This would include a follow- up on the hiring initiatives in Nepal to increase vaccinations in rural populations.
To monitor if there have been any changes vis-à-vis right to health and vaccinations for undocumented migrants in countries examined, including Uganda and Ukraine.
To monitor purchases and prices of novel antivirals in Peru, Ukraine, and other MICs included in Phase 2.
To communicate advocacy messages resulting from this analysis to CSOs.
Given similarities in symptomology of COVID-19 and TB, to understand reasons why in many countries COVID-19 AgRDTs are not being offered to those attending TB screening.
To include an indicator on whether countries have digitised human resources systems, and whether those include CHWs.
To explore and understand support provided to countries through the Vaccine Delivery Partnership
ITPC has created a new resource – a Guide to HIV for Community Education and Advocacy. The Guide is designed to build demand for, and improve access to quality services for HIV– and improve health, quality of life and survival among people living with HIV. The Guide can be used by people who want to learn on their own, at their own pace.
The interactive PDF includes three levels of information: from bite-sized basics to World Health Organization recommendations for HIV transmission, testing, care and treatment. It includes discussion questions at the end of each section for exploring advocacy opportunities.
Sharing this information can help people living with HIV and their communities know what to fight for, and why it is worth fighting for.
Larissa Donald, Citizen Science Life Maps Project Manager
Children’s lives are being put at risk because of a persistent, systemic lack of appropriate paediatric medicines. The Global Accelerator for Paediatric Formulations (GAP-f) aims to give all children equitable access to medicines they need.
Watch what Solange Baptise had to say at the launch of the GAP-f strategic plan:
Read the full transcript here:
If you could tell us about the importance of civil society when speaking about developing and delivering paediatric medicines and from that, how can civil society bring children’s needs to the table?
Thank you very much. Hi, Patricia. Hi, everyone. It’s such a pleasure to be here. It’s a very exciting time for this launch, seeing the fruits of a lot of labour.
Like Mari-Angela said, and as we also saw on the video, the problem we’re facing is not one of science, right? It’s not one of actual molecules themselves, but the really big issue we are facing are the persistent systemic barriers to innovation and access.
And you know, how often have we seen great products brought to market with low uptake or little demand? Or not exactly going as was planned in theory or design in this sort of a programmatic or product pipeline.
And then when we look at the paediatric space, we have many challenges to overcome. I think the first place I would start and most people who know ITPC’s work, we will continue to speak out. Unfortunately, we still see health and health products from a capitalist and market perspective. We end up talking about volumes and markets, and when you think about it from a paediatric perspective, they are not large and so this leads to these persistent issues that we see, that are long time spans for development of formulations with weak market incentives and so we end up with pricing issues or just simply a lack of a product.
Then when we do get the product, we have rollout problems right? Rollout of the products always takes time, and we need a clear sense of who needs them, which leads us to the issues of access and the critical need for increased access and capacity for in particular things like early infant diagnosis when it comes to HIV.
Civil society and more specifically, parents and guardians of children needing medicines are the critical stakeholders, right? Because children don’t have a collective voice outside of that group. I think we all can see this, but in order for them to be effective in communicating and amplifying the needs of children, we need to consider a few critical things that I just wanted to bring out here.
Guardians and parents seldom treatment literate. They aren’t treatment education programs aimed at this group, so you find it very difficult for this group to collectively plan together and have one voice and that has been critical in many of our movements, especially HIV, where we’ve seen that when we come together we’re able to amplify issues; when you have a collective voice and we also know the issues that are just the most pressing needs.
We have to tackle malnutrition, which has been made worse now due to COVID-19 and the increased food insecurity and job insecurity that many families face and then the effects are also to children.
And for HIV in particular. We know the issues of access to early infant diagnosis, diagnosis also of advanced HIV disease. I wanted to make sure we put that out there and also following up on the side effects of these issues for children separately.
The lack of appropriate paediatric medicines is putting children’s lives at risk.
The Global Accelerator for Paediatric Formulations (GAP-f) aims to give all children equitable access to medicines they need.
You know you asked for short remarks I wouldn’t be super long. I wanted to end by reminding us of the framework that we’re using that was just shown up on the screen, which was to prioritise, align, then accelerate and intervene.
Effective communities have a role in each of these aspects of the framework to deliver impact.
We often end up having communities rubber stamp something, saying yes, we read this and this sounds good or simply be the ‘tested upon’, so please, let’s find a clinical trial, let’s test this new medicine, let’s see if this diagnostic innovation that we’ve come up with can work or, or ask them be engaged at the end to generate demand. “Why aren’t you using it? Look how great it is? Why aren’t you using it?”
The civil society really needs to be clearly unpacked. Civil society is in a sense too large a group.
We need to think about effective communities, and we need to think specifically about parents and guardians of children to be able to articulate their needs, to keep their voices amplified with the needs of children, and also to monitor the rollout through community led monitoring and bring solutions to the table where they can see them and also to hold duty bearers accountable.
I think each of those that I’ve mentioned, everyone will be able to think of an example in any disease they’re working in where they can see the role of effective community. So, we look forward to being a valued partner and civil society in this forum and I’ll stop there. Thank you.
Congratulations to our friends at Salamander Trust, who are among co-authors of an article titled “What will it take to achieve the sexual and reproductive health and rights of women living with HIV?” published in Women’s Health, January 2022. The article cites the ITPC’s 2020 advocacy briefConfined by COVID-19: Women and Girls, HIV and SRHR is part of the collection on women’s health in the context of HIV, and it is part of a collection on women’s health in the context of HIV, published by Sage.
What makes the article unique is that the co-authors have collated and cited materials produced by women living with HIV from around the world. Research led by women living with HIV isseldom funded. Formally recognized evidence from women’s own perspectives is patchy at best. That research gap adversely affect policies and programmes in relation to women’s rights. Thus, efforts to achieve an ethical, effective and sustainable response to the pandemic are hindered.
“For women living with HIV, we are potentially on the verge of seismic change, with strong new commitments around our SRHR from UNAIDS, the Political Declaration, the Global Fund, some encouraging signs from WHO’s and PEPFAR’s latest HIV draft strategies, and global commitments to accelerate action on gender equality, gender-based violence, SRHR and feminist movements through Generation Equality. There is also some momentum towards universal health coverage for all, including people in key populations.
So what will it take to turn this potential into reality?
As ever, it comes down to political will…Clinicians and researchers alike, we need you to do the following:
Move beyond the top-down, disease-driven siloed, target-oriented responses, which have failed so many and which are no longer fit for purpose.
Place women living with HIV in all our diversities, at the centre of research and prioritize our own diverse SRHR issues as these research goals.
Ensure that all research you conduct meaningfully involves women living with HIV throughout. Check that all platforms you speak from have included women living with HIV meaningfully in their planning – and that women and their own agendas are included in the discussions.
Ensure that all your service delivery meaningfully involves those in your care in design, delivery and accountability controls.
Stand with women living with HIV to engage with donors and other policy influencers to turn evidence into policy – and make change happen.
Join us in celebrating your successes once you see these new approaches flourishing.
Donors, governments and the United Nations, we need you to do the following:
Be courageous in driving through your commitments to investing in our work, organized by us.
Stand firm in your commitment to effecting the structural changes required to create, respect and enact the policies we want to see.
Ensure the involvement, expertise and rights of women in all their diversity as equal partners and influencers at national level, to dispense your funds justly.
Ensure that evaluations are guided by and fully involve women living with HIV – women who are active in their communities, have a wealth of expertise and knowledge about what works and what does not, and that this should be valued beyond being interviewed as key informants or engaged in a tokenizing way.
Ensure safe access to SRH for all, regardless of gender identities. Fund research on SRH needs for gender minorities.
Remember that it is in your gift to influence the future direction of millions of women’s and girls’ lives.
An effective, ethical and sustainable response to the AIDS pandemic is possible. Violence is preventable. Mental health and SRHR can be ameliorated with trauma-aware care. The power of peer support is immeasurable. Lives can change. Hope can be restored. Resilience can be built. Rights can be upheld.
The evidence is there. Together we can all do it. Let’s go.
Wame Jallow, Director of Global Programs and Advocacy
We applaud this scientific breakthrough but note that it was only possible because the patient was being treated for cancer. This is not a viable cure for non-cancer patients as it is expensive and the procedure risks potentially life-threatening complications.
Globally, 10 million people living with HIV (PLWH) are unable to access treatment. We call on governments and pharma to make the tools we have against HIV accessible and affordable to all who need them.
For better or worse, it seems like the COVID-19 pandemic is the first time that many people are appreciating the importance of community-centered approaches. It’s like, all of a sudden, everything that communities have been doing over the last decade-plus now matters. At ITPC, we know that communities are often first to identify the problems, and communities can be central to formulating and implementing the solutions.
Empowering communities has always been a central part of the mission of ITPC. Empowerment can take the form of increasing awareness through education. Empowerment also means giving communities the right tools to collect actionable information. And ultimately, empowerment means increasing the resilience of communities on the ground, so that they can successfully do their work.
I was pleased to share some of these perspectives in this article recently published on BLKHLTH, a blog covering topics in public health, medicine, and inequity in the U.S. Akilah Wise @awisephd, a public health researcher and journalist based in Atlanta, is a freelance writer for BLKHLTH.
Akilah interviewed Solange Baptiste, Othoman Mellouk and myself about COVID-19 pandemic’s impact on developing African nations.
Recipients of care and their communities are a first and central resource to address the epidemics of HIV, TB and COVID-19. Our recently published rapid assessment and report, titled Community-Led Monitoring in Indonesia, Uganda, Ukraine and Vietnam: Assessing the Impact of Covid-19 on People Living with HIV, has shown that recipients of care can usefully describe gaps in access to essential health services—including routine health screenings and testing services, medical care and treatment, and prevention and support services—and can showcase disparities in health and human rights.
The final paragraphs of the Conclusion point to what the participating community organizations did locally with the results of this report during the past year and what can be done in the coming year:
“Through community-led monitoring and related advocacy, recipients of care can also provide valuable support to health providers and government health authorities to “build back better” in a post-pandemic landscape and better tailor prevention and treatment services to population needs, achieve higher rates of utilization and retention, and produce better population-level health outcomes with more effective and efficient use of resources.
Improvements in the quality and effectiveness of health programmes in ensuring positive health outcomes would hasten achievement of the Sustainable Development Goals. A major push to finally end HIV and TB epidemics is needed to deliver humanitarian and health security benefits for the world.”
ITPC recognizes the tireless efforts of all partner organizations in implementing the activities highlighted in this report. We express our particular thanks to all of the people living with HIV, health workers and community activists who were involved in data collection. Many thanks to Martine Chase and Rebecca Hodes, as well as my colleagues who helped write and edit this report. ITPC also appreciates support from the Partnership to Inspire, Transform and Connect the HIV Response (PITCH) programme.
This rapid assessment and report was managed by ITPC through Watch What Matters, a community-led monitoring and research initiative to gather data on access to and quality of HIV treatment globally.