The report assesses and provides detailed information on the availability and affordability of COVID-19 vaccines from Oxford/AstraZeneca, Johnson and Johnson (J & J), Moderna, and Pfizer/BioNTech, covering 17 MICs where our Make Medicines Affordable (MMA) campaign partners work – Argentina, Armenia, Belarus, Brazil, El Salvador, Georgia, Guatemala, Honduras, India, Kazakhstan, Kyrgyzstan, Moldova, Morocco, Russia, Thailand, Ukraine and Vietnam. The information they gathered covers vaccine supply, delivery, donations, pricing and technology transfer during the period between 1 January 2021 and 19 January 2022.
The report clearly shows that the existing system of intellectual property (IP) protection on vaccines significantly contributed to global inequity, causing higher prices, delays in registration and supply – and that donations did not fill these gaps. Of the 2.8 billion vaccines delivered to the 17 MICs by January 2022, only 4% of doses came from COVAX deliveries – significantly less than what was expected from this global initiative.
“Global efforts to address vaccine nationalism were ineffective, especially for MICs, where the impact of COVAX was low ,” noted Othoman Mellouk, Access to Diagnostics and Medicines Lead at the International Treatment Preparedness Coalition (ITPC). “Donations are an unpredictable and unreliable strategy.”
MICs paid too much for their vaccines. Vaccine prices in six MICs were, on average, 9.4 times higher than their estimated/ benchmarked prices. In addition, some countries did not receive all of the vaccines pledged or sold to them – making it impossible for them to cover their populations. Overall, MICs had a 52% vaccination rate, while Canada, Germany, Israel, Japan and the US achieved an average vaccination rate of 69% – nearly reaching the World Health Organization’s global goal of 70% by mid-2022.
MICs also had to wait too long for vaccines to be registered and supplied (until March 2021 for the Oxford/AstraZeneca vaccine, until May for the Pfizer/BioNTech vaccine, and until July for vaccines from J&J and Moderna).
“All of this contributed to high hospitalization and mortality rates, and long-term health effects from COVID-19 in these 17 countries,” added Othoman, “and it reinforces the importance of providing technology transfers, to enable sustainable local vaccine production. Vaccine coverage rates were higher in MICs that established local production (61% vs. 40%).”
ITPC presented recent quantitative findings from the Citizen Science community-led monitoring (CLM) project at the 12th International AIDS Society Conference on HIV Science (IAS 2023), 23-26 July 2023, Brisbane, Australia.
ITPC’s abstract was among 1,571 accepted out of 4,252 submitted (37% acceptance rate). Our abstract was also among just five CLM-focused abstracts accepted for presentation (see abstract book). Through ITPC’s presentation at IAS 2023, our Citizen Science work reached a global audience of 5,000 people who participated in the conference, in person and virtually.
Join us, as Jelena Bozinovski, the ITPC Community Data, and Advocacy Manager on Monday the 15th of May at a webinar series on “Strengthening Community-Led Monitoring (CLM) in Asia and the Pacific”.
This webinar series provides an opportunity for partners and KP community members across the Asia Pacific region who are implementing or interested in CLM to learn about different aspects of CLM such are CLM general principles and its steps, practical examples, funding opportunities, and more.
Participants also get the opportunity to connect with other CLM implementers and TA providers from global and regional levels. This webinar series is a part of joint efforts to build a sustainable CLM mechanism to empower communities and improve HIV response in Asia Pacific region.
In collaboration with ICAP CQUIN, we have co-created atoolkit to help countries in the CQUIN network assess recipient of care satisfaction with differentiated service delivery (DSD). “Several research studies show the link between recipient of care satisfaction and HIV treatment adherence, which is a critical pre-requisite to improving treatment outcomes,” said Gillian Dougherty, MPH, BSN, ICAP’s Quality Improvement advisor and co-lead of the CQUIN Quality Management Community of Practice. “Through our interactions with network member countries over time, countries identified gaps in their ability to define, measure, and improve the satisfaction of people receiving HIV services. Several meetings have also brought issues of provider treatment at facilities to the forefront. The toolkit is our response to the demands by network member countries,” she added.
The toolkit was co-created with input from three of CQUIN’s communities of practice – DSD Quality Management, Differentiated Monitoring & Evaluation, and the Community Advocacy Network, where the latter is managed by ITPC. It includes information about defining and measuring satisfaction with health services, the advantages and disadvantages of different approaches and tools, and a wealth of case studies and examples that countries can use to design contextually appropriate evaluations of recipient of care satisfaction. It also emphasizes the importance of using these data to continuously improve satisfaction scores.
Among others, the toolkit describes diverse approaches to assessing recipient of care satisfaction, including community-led monitoring (CLM) of health services.
“It is important for us that ministries of health understand CLM as a complementary approach to other monitoring systems in place to improve health services.It is a tool that may unearth data that will usually not arise from facility-led quality improvement initiatives because CLM data collectors come from affected communities themselves. In this way, CLM collects insights directly from recipients of care – data which helps to identify underlying issues at the individual and system level and contributes to the solutions required to fix them.” – Krista Lauer, ITPC Citizen Science Lead.
This series of Community-Led Monitoring (CLM) tools has been developed in response to some of the most common questions we receive about CLM. Each tool, guide and brief is written in clear language that is meant to be easily understood by a community audience.
As communities are faced with opportunities to scale up CLM – including through the Global Fund’s GC7 cycle and PEPFAR’s COPs process – we hope this detailed information about specific topics is useful across your many efforts.
ITPC is excited to share a series of newly developed resources on Community-Led Monitoring (CLM) that we are officially launching today on our CLM HUB and the ITPC Global website.
CLM DATA MANAGEMENT TOOL GUIDE
This tool explores how to think critically about selecting the best CLM Database format. What are the critical questions to ask to make an informed choice when selecting the best database, including: data use needs, privacy, ease of use and sharing, costs, and many more. It is intended for community led organisations.
This guide explains key processes involved in analyzing qualitative and quantitative data collected through CLM. It provides an introduction to mixed methods data analysis techniques to help communities integrate findings and bring forward more meaningful conclusions.
These guidance documents were developed with support from the Global Fund to Fight AIDS, Tuberculosis and Malaria under the Community-led Monitoring investment of the Global Fund’s COVID-19 Response Mechanism (C19RM).
You can access all of our CLM Technical Briefs atwww.clmhub.org; they are translated into French, Spanish, and Russian.
Several additional resources are being finalized and will be available on the CLM Hub shortly, including:
COMMUNITY GUIDE FOR CLM DATA USE IN DECISION MAKING
This is intended to be used by community organizations to educate, orient, and sensitize different types of decision makers about how to value and utilize CLM data. This guide will be available in English, French, Russian and Spanish language.
STEP-BY-STEP GUIDE FOR APPLYING TO THE UNAIDS TECHNICAL SUPPORT MECHANISM IN 2023
Since the process changed recently, ITPC developed a practical ‘Cheat Sheet’ on specific steps CBO need to take when applying for UNAIDS Technical support in 2023 and beyond.
Please feel free to share these resources widely with your community partners!
Jelena Bozinovski, Community Data and Advocacy Manager
During 2020 and 2021, a novel coronavirus morphed from a local outbreak into a pandemic, reaching 30 countries in its first months after becoming locally established and leading to the death of 23 million people by September 2022. The COVID-19 pandemic and the response, including travel restrictions, population lockdowns, and other disruptions, caused median global gross domestic product to drop by 3.9% from 2019 to 2020, making it the worst economic downturn since the Great Depression. To respond to the COVID-19 pandemic in 2020 and 2021, governments rapidly allocated and spent massive amounts of funding for research, services, and economic stability.
Where did the money go? Was funding well spent?
“Missing the Target” is the 13th report produced by ITPC since 2005, and the first MTT report that engaged with government resource accountability during the COVID-19 pandemic. This report is a retrospective analysis looking back at the first two years of government’s response to COVID-19 focusing on strengths, successes, failed strategic and political decisions, and the disbursement as well as management of funds.It highlights the experience and perspectives of advocates in multiple countries to document progress toward global commitments for health, development and human rights.
Across 18 countries, partners found and documented the ways that resource allocations and expenditures intended for the COVID-19 response were (and are) challenging to track and seldom accountable for impact or achieving intended goals. Where goals were articulated, this report found structural challenges that undermined effective use of resources, and documented how, in the face of these issues and amidst colliding pandemics, civil society continued to hold governments accountable and improve country pandemic responses.
MTT report’s implications are relevant for the future of pandemic preparedness and response, which should involve communities. The gaps identified in the context of COVID-19 can and should be rectified now to strengthen readiness for surges in COVID-19 and to ensure that emergent outbreaks and future threats are better contained.
Community-led monitoring (CLM) is a key pathway to equitable access to HIV, TB and Malaria services. This guide supports the use of data generated by CLM for evidence-based decision-making and action to improve programs and policies and to ensure equitable access to quality HIV, TB, and Malaria services. You can also download related training materials, including PowerPoint presentations.
Developed with extensive community, technical partner and donor consultations and pilot testing in South Africa and Democratic Republic of Congo the guide and training materials provide tools and recommendations to analyse CLM data, to turn data into actionable information and, to communicate it effectively to support evidence-based decision making. It also complements other guides related to CLM design, implementation, and advocacy, including the selection of indicators, data collection methods, data management systems, and data quality assurance. All the tools, guides and documents are accessible at clmhub.org.
The UNAIDS theme for World AIDS Day 2022 is “Equalize”. Despite decades of advocacy, unequal access to healthcare, particularly for key populations, remains the leading global challenge to the AIDS response.
Persistent Inequities
The outlook for key populations remains appallingly disproportionate. When we talk about “key populations”, we are not using an abstract health programming term. We are talking about the most affected people, people living at the intersection of stigma, restrictive laws, and economic marginalization. So, what makes some interventions more effective than others? HIV remains a moralized disease, and the gaps we persistently see with specific groups of people are less due to medical, clinical, scientific, and molecular issues and more due to human rights and political issues. To close these gaps, we need the political will to mitigate stigma and increase access.
We know that for key populations, peer-led and peer-provided services are the most effective for engagement, retention, and testing. There must be more support for, and investment in, community- and peer-led services that directly address stigma and provide quality services and, in turn, start to close health access gaps.
In other words, we need to #equalize. That means we need to stop sitting comfortably in our echo chambers sharing the results of our research. Research will always be important, but do we really need more evidence to address access gaps? Will this evidence really change the minds of political leaders in countries with punitive laws and policies?
We need to start thinking outside health boxes and much more about the political space. We need a robust civil society to ensure that we have leaders who see all people as human beings with equal rights to access to quality health: leaders who deliberately design and incentivize systems to ensure that equal access happens.
We must put the shrinking resources going into health in the right places; only targeted community investments can achieve that. And we need to have a larger conversation about global public investment about financing beyond health.
An Unequal Picture
We have a data problem that makes it easy for countries to claim they are achieving HIV targets while masking inequities in their sub-populations. For example, the 2022 UNAIDS data for Zimbabwe, assessing progress towards the 95-95-95 targets, paints a very pretty picture of goals achieved, but once you start disaggregating and looking at men who have sex with men and transgender communities, you see a totally different and strikingly unequal picture. For example, less than 60% of transgender women know their status compared to an aggregate of over 95% of the adult population.
We have to understand why barriers exist; not just what barriers exist. This will result in the granularity that ensures targeted interventions are in the right places. We need to understand why people don’t return to health clinics. It is past time to ask different questions to get different answers from a new perspective. The perspective of recipients of care must be included.
There is real life and there is theory. It’s all very well to talk about undetectable equals untransmittable (U=U) but if you can’t get an HIV test or a viral load test, if you can’t get your results and can’t easily access effective treatment, then pre-exposure prophylaxis (PrEP) remains theoretical.
We must acknowledge that the reason these health access gaps persists is that HIV remains a moralized issue. This disease is not treated like hypertension or diabetes. There are countries that write health policy not based on science but on the leading of their base that in many instances, deliberately excludes people from healthcare. We need to call out these policies, get more politically savvy, step outside the regular participants in our discussions, and start thinking about how we can pull political levers to expand access.
All-Consuming Pandemic
The future is community-led. COVID-19 illustrated why. The world rose to the challenge of responding to this new pandemic using the lessons of HIV, drawing from HIV-derived health infrastructure and community architecture.
Changes forced by COVID-19 also brought changes to the HIV landscape. A notable example was that, finally, there was a measurable increase in multi-month ART dispensing – something that HIV activists had been begging for forever. HIV self-testing and at-home methadone programs expanded during the COVID pandemic, and the importance of treatment education and health education was highlighted again. If people get the correct information, they can take care of their own health, reducing the need for clinicians to micro-manage care.
HIV community data and insights were pivotal in shaping the COVID-19 response. But on the flip side, COVID-19 was all-consuming. When asked about access to HIV prevention and testing services during COVID-19, a community-led monitoring participant replied, “It’s just COVID, COVID, COVID.”
Data from a 2021 ITPC community-led monitoring (CLM) project in Malawi compared access to testing services before and during the COVID-19 crisis, revealing that the largest testing, prevention, and treatment gap was among female sex workers, where HIV testing fell by almost 80% during the crisis.
This is one of the countless unintended consequences of the response to the new pandemic. Resources for HIV were diverted to COVID-19 – the focus on viral load testing shifted to testing for COVID, for example. During the lockdowns, people were afraid to be seen waiting for their ARVs in long lines outside clinics. There were confidentiality issues. Then we wonder why people are not coming back for their ARVs.
The Know-Do Gap
We know that CLM and community interventions are crucial, but it’s a fragile space. We are still constantly fighting for the legitimacy of data coming from communities. Is it robust? Does it use scientific methodology? Can we trust it? It is clear that CLM is valid. It is a part of the guidance for countries to access the top multilateral donor funds in the HIV space. CLM reports and by extension community data must be placed alongside national-level reports to get the whole data picture – this way, interventions are targeted for high impact.
CLM tells us what communities see as problems. Affected communities develop indicators for those pain points and track them over time. CLM not only shines a light on an issue; it also brings solutions to the table. The lived experiences of communities afford them invaluable insights that are critical to the co-problem solving that is needed for these persistent problems.
People who were struggling before as key populations are struggling even more in this “post-COVID” world. We are not going to achieve equal access unless we use demand-side/community data to shine a light on the laws, policies, and norms that make the “last mile” challenging. Community-led monitoring is an indispensable tool to help get us there.
On #WorldAIDSDay we acknowledge that sometimes just holding the line is a win. In a day of global austerity measures, despite decades of advocacy, we still have a long way to go to enable access to quality health and end stigma.
This year our #MakeMedicinesAffordable team hosted the Global Summit on Intellectual Property and Access to Medicine, bringing together experts in the IP field with community activists to ensure that diagnostics, medicines and health services are affordable.
#WatchWhatMatters championed community-led monitoring at the AIDS2022 conference in Montreal, launching CLMHub.org to make tools, training, and resources available and showcasing the power of CLM during the health innovation prime session plenary. In September we brought together thought leaders and experts in funding and sustainability, treatment literacy, data quality assessment and analysis, advocacy, and communication for the first-ever CLM Academy.
#BuildResilientCommunities staff worked to build community capacity to act and create change, putting recipients of care at the centre of the HIV response, mapping health access during COVID-19 and partnering with community research teams to explore government resource accountability. We strengthened community advocacy networks as part of the ICAP-CQUIN project and developed novel health education tools like the COVID IQ quiz and our HIV treatment guide.
In 2022 ITPC Global held the line on community leadership, access to medicine and health resources.
EANNASO, Anglophone Africa Regional Platform, Frontline AIDS, and the Stop TB Partnership. Community-led monitoring: A technical guide for HIV, tuberculosis, and malaria programming. 2021. https://stoptb.org/assets/documents/resources/ publications/acsm/CBM%20Guide%20Report_Final%200309_compressed.pdf
Baptiste S, Manouan A, Garcia P et al. Community-led monitoring: When community data drives implementation strategies. Current HIV/AIDS Reports (2020) 17:415–421.
Since the COVID-19 pandemic, proposals for how to restructure global governance have been gaining traction. One of those is Global Public Investment or GPI, which is increasingly seen as a plausible paradigm shift for the traditional aid system. But could GPI really replace aid financing? And what would it take?
Inside the 42-day non-stop sit-in protest over HIV drugs in India.
In 2002, the government of India started its Anti-Retroviral Therapy (ART) programme. Today, more than 1.4 million people living with HIV are receiving free ART across the country. However, recurring ART stock-out has been a chronic issue faced by the programme.
Delhi Network of Positive People (DNP+) has been keeping track of ARV shortage and stockout since the start of the National Aids Control programme (NACO) in 2004. In February 2022, there was an acute shortage of certain antiretroviral (ARV) drugs in ART centres across India. Among them were paediatric formulations of LPV/r and dolutegravir, the backbone of HIV treatment. Several correspondences and official requests were made by DNP+ and other organisations to SACS, NACO and government officials to resolve the shortage and stockout across India but to no avail. In response, in March 2022, some national level PLHIV leaders decided to conduct a series of advocacy actions. But none of these action plans materialised, and nationwide antiretroviral stockouts in India continued. Instead of receiving a minimum one-month ART supply, our community members in various states reported that they were issued five days of ART supply.
This means that in one month, they have to visit the ART center five times to collect their life-saving medication. Some reported that they had to return home empty-handed, without a single pill, as the ART centers advised them to purchase medication themselves. This is not feasible for most of the PLHIV, many of whom barely make ends meet.
We learned that the ART stock-out situation was due to two main reasons. First, it became apparent that the government’s own ART Procurement Tender was cancelled twice, an example of bureaucratic negligence. Secondly, NACO had decentralised ARV procurement to the states’ SACS (State AIDS Control Society). This is a design failure, as many SACS do not have the capacity or the resources to do the required procurement. The fall out affects thousands of PLHIV across the country, not just in terms of ART stock-outs, but also quality control.Some state level PLHIV networks have checked the quality of DTG of certain generic company and found out that only 45% content of DTG chemical found!
In May 2022, NACO issued a memo to all SACS for shifting to an alternative regimen “due to critical stock situation” and that too without viral load test!!! Meanwhile DNP+ has been informed by community members and PLHIV networks all over India regarding the stock-out/shortage of ARV in several districts including Assam, Uttarakhand, Haryana, Gujarat, Punjab, Chandigarh, Himachal Pradesh, Jharkhand, Rajasthan, Bihar, Uttar Pradesh and Manipur.
Simply put, it seemed that no one cared if we live or die. We were left to defend ourselves, so we had to do what we don’t want to do. We held an indefinite peaceful sit-in protest. And so, on the 21st July, DNP+ leaders decided enough is enough.
About 30 members and staff of DNP+ went to NACO Office at the 6th floor of Chanderlok Building, Janpath, New Delhi and started our Indefinite peaceful SIT-IN PROTEST, demanding Immediate restoration of ART supplies – minimum one month ART supplies for all.
For 42 days, from 21st July to 31st August, we stayed in the corridor of the NACO office. On a daily basis at any given moment, 15 to 25 people were having breakfast, lunch and dinner and sleeping overnight at the protest site.
During the protest, a few of our staff & members got sick as we were having roadside Dhaba food for our daily meals. It was very hot and humid, with mosquitoes and bed bugs, not the easiest thing to do. For basic sanitation facilities, we used NACO office toilet and washroom, and drinking water. We also missed a few important festivals and public holidays, not to mention our family and friends. At some point, we felt lonely, crazy, or sometimes we almost even doubt ourselves.
But no-one took leave or holidays during the protest. Every member is committed to achieving our goal, regardless of all odds and challenges. We were ready to live or DIE fighting for the cause of our community.
And while all the DNP+ project site offices were closed during the protest, some of us continued to do our daily work right there at the site of the protest, including our bi-monthly support group meeting, which we consider as our backbone activity. NACO would invite us for official meetings at least 7 times during the lengthy negotiation process.
However, most of the meetings ended in stalemates and broken promises. NACO continued to deny any problem of ART stock-out in India, while DNP+ continued to challenge with real-time evidence collected on the ground from various state on a daily basis. NACO and a few of their allies individually and jointly attacked us, countered us, cornered us and tried every trick and strategy up their sleeves, even threatening us.
However, we continued to stand firm and remain true to our one and only demand: “Every person living with HIV in India must receive at least one month ART supply.”
Only then will DNP+ call off our protest. After the seventh meeting, DNP+ received an invitation from Union Health Minister to meet with him along with NACO’s top officials and NCPI leaders. The health minister was very attentive and supportive of DNP+’s demands.
At the Health Minister’s table, DNP+ raised the issue of ART stock-out in India, ART tender, paediatric medicine, separate helpline number to deal with stock-out, and to develop a real-time IT monitoring system. To each point raised, the Health Minister asked NACO if this can be done. NACO assured the minister all the points raised will be delivered shortly.
Although we faced immense hardship, we were touched by people’s generosity and kindness. We received lots of donations from various NGOs and individuals in cash and in kind. Some people sent food, while some sent drinks and fruits for refreshment. We also received lots of financial support donations from many individuals and organisations across the country. All their kind gestures reenergised our mental strength, and gave us resilient power to face the seemingly insurmountable odds in front of us.
We also received lots of solidarity letters supporting our movement, be it from the various NGOs in the state or national level community networks or international community organisation. These public statements put pressure on the government, and boosted our energy and advocacy efforts.
Notably, during the TAC General Assembly DNP+ was honoured virtually with a “We won’t take this lying down” Award. This was on Day 37. Apparently, someone had made a PowerPoint presentation of the protest at TAC.
Almost every day, regional, national and international media crews come to the protest site to cover the protest and interview our members. We went ‘live’ on Facebook every morning and evening giving updates, protesting, and frequently using Twitter too. To keep in touch, you can follow us on social media.
In response, in March 2022, some national level PLHIV leaders decided to conduct a series of advocacy actions. But none of these action plans materialised, and nationwide antiretroviral stockouts in India continued. Instead of receiving a minimum one-month ART supply, our community members in various states reported that they were issued five days of ART supply.
