From Commitments to Action:
Civil Society Perspectives on Reaching
Universal Health Coverage“Politicians call it UHC. I may not call it UHC, but I will call it one step towards UHC.”– Civil society representative participating in a focus group in Pakistan

ACKNOWLEDGEMENTS
This report was written by Tammy Sutherns-Burdock and Carthi Mannikarottu. The methodology
and focus group discussion questions were derived from the work of the State of the UHC
Commitment review task team, including the UHC2030 Secretariat at WHO and the Swiss Tropicaland Public Health Institute, led by Akihito Watabe (UHC2030; WHO) with Marjolaine Nicod andToomas Palu (Joint Leads of UHC2030).
The CSEM team leading the planning and presentation of the focus groups included Aishling
Thurow (CSEM Secretariat; Management Sciences for Health), Carthi Mannikarottu (CSEM
Secretariat; WACI Health), and Eliana Monteforte (Global Health Council; CSEM Advisory Group)
supported by Amy Boldosser-Boesch (CSEM Secretariat; Management Sciences for Health),
Khuat Thi Hai Oanh (Center for Supporting Community Development Initiatives; CSEM Advisory
Group), Masaki Inaba (Africa Japan Forum; CSEM Advisory Group), Tara Brace-John (Save theChildren; CSEM Advisory Group), and Waiswa Nkwanga (CSEM Secretariat; Management
Sciences for Health).
A core team of partners co-developed the country consultations and linked with in-country civilsociety networks. Members included: Gang Sun (Joint United Nations Programme on HIV/AIDS,UNAIDS), Grace Dubois (NCD Alliance), Jennifer Ho (APCASO), Lasha Goguadze (International
Federation of Red Cross and Red Crescent Societies, IFRC), Luis Manuel Encarnacion (NCD
Alliance), Ravi Ram (People’s Health Movement), RD Marte (APCASO), Sarah Lindsay (Living
Goods; Communities at the Heart of UHC).
We are grateful to the following partners for implementing the focus groups and developing
reports on which this summary is based:● Bhutan: Lhak-Sam – Bhutan Network of People Living with HIV (BNP+) with APCASO● Burkina Faso: Réseau Accès aux Médicaments Essentiels (RAME)● Cambodia: Khmer HIV/AIDS NGO Alliance (KHANA) with APCASO● Caribbean Region: Healthy Caribbean Coalition (HCC) with NCD Alliance● Colombia: Mesa Colombiana de Incidencia por las Enfermedades Crónicas (MECIEC)
with NCD Alliance● Egypt: UNAIDS● Georgia: Georgia Red Cross Society with IFRC
● India: National Coalition of People Living with HIV India (NCPI+), Gujarat State Networkof People Living with HIV/AIDS (GSNP+) with APCASO● Japan: Africa Japan Forum, Chie Matsumoto● Kazakhstan: National Red Crescent Society of Kazakhstan with UNAIDS and IFRC
● Kenya: Health Rights Advocacy Forum (HERAF), Health NGOs Network (HENNET), Living
Goods, People’s Health Movement Kenya, WACI Health, White Ribbon Alliance Kenya● Lao PDR: Community Health & Inclusion Association (CHIAs) with APCASO● Mexico: México Salud-Hable Coalition with NCD Alliance

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Nepal: Trisuli Plus with APCASO
Niger: Plateforme Démocratie Sanitaire et Implication Citoyenne (DES-ICI) with RAME
Pakistan: Association of People Living with HIV & AIDS (APLHIV) – Pakistan, HealthServices Academy Islamabad with APCASOSouth Africa: South African NCDs Alliance (SA-NCDA) with NCD Alliance
United States: Global Health Council (GHC), CORE Group
Vietnam: Centre for Supporting Community Development Initiatives (SCDI) with APCASOThe summary pages were designed by Jaywalk Designs and the cover page by Ebin Bastian
Fernandez. We are also grateful for the communications support by Sam Makau (WACI Health),
Beatrice Bernescut (UHC2030 Secretariat), and colleagues from our partner organizations.
Finally, this work would not have been possible without the focus group participants who werewilling to share their insights and experiences with the current state of health systems in theircountries. We are grateful for UHC advocates around the world working together to achieve
health for all.

ACRONYMSART

Antiretroviral therapy

CSEM

Civil Society Engagement Mechanism for UHC2030

CSO

Civil Society Organization

LGBTQIA+

People who are lesbian, gay, bisexual, transgender and gender diverse,intersex, queer and questioning, asexual and aromantic, and otherrelated identities

NCDs

Non-Communicable Diseases

NGO

Non-Governmental Organizations

STIs

Sexually Transmitted Infections

TB

Tuberculosis

UN HLM

United Nations High-Level Meeting

UHC

Universal Health Coverage

WHO

World Health Organization

INTRODUCTION

On 12 December 2012, the United Nations General Assembly unanimously endorsed a resolution on
Universal Health Coverage (UHC), urging countries to accelerate the transition to universal access toquality and affordable health services for all. Governments reaffirmed their commitments to achieving
UHC at the United Nations High-Level Meeting in September 2019 through a Political Declaration.1 In thelead-up, UHC champions and advocates from across sectors mobilized high-level political attention anddeveloped the Key Asks from the UHC Movement, a set of core requests for leaders.
To monitor progress on these commitments, UHC2030 publishes a State of Commitment to UHC reportthat provides a multi-stakeholder review of the status of UHC. It includes country data profiles that
present a snapshot of the key commitment areas in the 2019 Political Declaration on UHC and a global
synthesis report with inputs from a range of stakeholders including civil society. The review is an
important tool to support accountability processes within and across countries.
From Commitments to Action: Civil Society Perspectives on Reaching
Universal Health Coverage summarizes results from 19 focus groups
conducted alongside this multi-stakeholder review process.2 They
were planned and led by the Civil Society Engagement Mechanism for
UHC2030 (CSEM) with APCASO, Global Health Council, International
Federation of Red Cross and Red Crescent Societies (IFRC), Living
Goods, NCD Alliance, People’s Health Movement, the Joint United
Nations Programme on HIV/AIDS (UNAIDS), and country partners.

Focus groups were held in:
Bhutan, Burkina Faso,
Cambodia, Colombia, Egypt,
Georgia, India, Japan,
Kazakhstan, Kenya, Lao PDR,
Mexico, Nepal, Niger,
Pakistan, South Africa, UnitedStates (US), Vietnam

The conversations highlighted important issues that governments andother decision-makers should address to ensure UHC policies areinclusive and equitable. Participants were mostly representatives ofcivil society organizations (CSOs) and networks, or communities often
left behind. Their understanding of the progress made in eachcommitment area complements the multi-stakeholder review processwith stories of lived experience, ground-level insights on the gaps inpolicy and practice, and recommendations for the road ahead.

A separate focus group
included participants fromseven countries in the
Caribbean region:
Antigua & Barbuda, Bahamas,
Barbados, Belize, Dominica,
Haiti, St. Vincent & the
Grenadines

We hope these reflections and recommendations from civil society serve as signposts on the road to the2023 UN High Level Meeting on UHC, the next global opportunity to convene all stakeholders andrecommit to achieving health for all.
1

The Political Declaration on UHC adopted by UN Member States in 2019 includes the most comprehensive set of
health commitments ever adopted at this level; countries will report their progress at the UN HLM in 2023.
2
The State of the UHC Commitment review is focused on the 44 countries that submitted Voluntary National Reviews(VNR) in 2020. Of the focus group countries, those that participated in the VNR and are included in the State of the
UHC Commitment review are Antigua & Barbuda, Bahamas, Bhutan, Colombia, Egypt, Japan, Lao PDR, and Niger.
1

STRUCTURE OF CONSULTATIONS

Focus group discussions are a qualitative approach togaining insight and in-depth understanding of social
issues. The method is utilized to obtain data from apurposely selected sample of a population, who aretheoretically representative of a broader group.
The focus group methodology was adapted by country
partners to best suit their advocacy needs and align withongoing activities. The discussion methodology wasadapted to the local contexts, translated when necessary,and structured to suit the number of participants (Annex I).
Focus group discussions generally included a facilitator
who posed a set of guiding questions (Annex II) to
stimulate and direct the conversation, but also allowed
stakeholders time and space to give their personalaccounts related to UHC in their countries. Most occurredvirtually given the COVID-19 context, but some country
partners were able to hold in-person meetings withappropriate precautions.

The focus groups addressed issues inhealth care access and equity.
Discussions included:• What is working in terms of UHC
policies/programs in your country?
• Which populations are most left
behind by policies and programs?
• Who is not captured in UHC data andwhat are ways to include their voices
in progressing toward UHC?
• What diseases have been left behindin terms of quality and coverage ofcare?
• What are some of the other critical
UHC gaps in your country?
• What impact has COVID-19 had on
UHC and access to quality healthservices?

KEY FINDINGSThe nine key findings in this report are highlighted within the context of the Key Asks of the UHC
Movement: (1) Ensure Political Leadership Beyond Health (2) Leave No One Behind (3) Regulate andLegislate (4) Uphold Quality of Care (5) Invest More, Invest Better (6) Move Together (7) Gender Equality(8) Emergency Preparedness.

ENSURE POLITICAL LEADERSHIP BEYOND HEALTH
Finding 1: There remains a lack of clarity and leadership for cross-sectoral coordination on UHC,
especially in policy planning. Governments must strengthen collaboration mechanisms with a specific
aim of achieving UHC and include civil society as partners.
Community and CSO stakeholders across all countries felt that UHC is understood to be an important
goal requiring collaboration from many sectors; however, coordination mechanisms that engage acrosssectors to improve health or advance UHC are not always well understood. Mechanisms highlighted by2

stakeholders mostly include UHC as a potential focus within another focus area; specific UHC
coordination platforms or working groups that cross-cut sectors and institutions were not common.
Participants in Bhutan, Colombia, Kenya, Pakistan, and Vietnam mentioned a few laws, initiatives orprograms related to UHC, but noted there was no specific mechanism to facilitate multi-stakeholder
engagement. Focus group participants in Georgia noted that the councils or committees that do exist
are dominated by experts and professional associations, while communities represented by vulnerable
groups are not invited to participate in a meaningful way.

"If the government really
had a commitment to UHC,
it should implement a planof inspection, control andsurveillance over all theactors in the healthsystem."– Participant in Colombia

This was echoed across the board. In the Caribbean regional focus
group, stakeholders described a landscape ranging from minimal tohigh engagement; all agreed there is a lack of direct collaboration on
regulation. In South Africa, stakeholders noted that consultation
processes around the National Health Insurance (NHI), which is only afinancial mechanism, were not sufficiently empowering forcommunities, with no coordination mechanism. In the US, there arestark differences in how health is coordinated in different states. Focus
group participants shared that the fractured system and competing
priorities prevent adequate planning, spending, and coordination for
expanding coverage to quality health care.

Where there is coordination across sectors, it is not enough to be effective. In Niger, there are working
group meetings on UHC, which were first held in 2014 and then in 2019; while stakeholders agreed thatthe meetings were constructive, they have not been regularly scheduled. This sentiment is unanimously
echoed across all countries in the sample: there is a need to improve the scope and quality of multistakeholder engagement to achieve health for all as well as to ensure civil society and communities areincluded at all stages of decision-making including policy planning.

LEAVE NO ONE BEHIND
Finding 2: Despite progress made in expanding coverage, vulnerable communities face many barriersin accessing health care. The physical, financial, socio-cultural, and legal challenges faced by the mostvulnerable must be prioritized and addressed as part of UHC programs.
All focus group discussions flagged groups of people who are struggling to gain access to healthservices due to physical, financial, socio-cultural, and legal challenges, including:• People living with a disability• People living with non-communicablediseases (NCDs)• People who use drugs or alcohol• Poor and vulnerable people, including the• LGBTIQA+ communities
urban poor
• Adolescent and young women who are• Sex workers
pregnant or breastfeeding• Young people and children, including• People living with HIV
orphaned children
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•
•
•
•

•
•
•
•

People living in insecure or rural areas
Internally displaced people, migrants,
and refugees
People who are elderly
People with mental health needs

People who have been incarcerated
People experiencing homelessness
Indigenous and ethnic minorities
Coal miners

Even where there is progress made toward expanded coverage, some communities remain left
behind. Focus group participants in Bhutan noted that barriers to accessing health services forvulnerable populations include stigma, high costs, and a shortage of service access points.
Participants in Japan noted that the greater the vulnerability of an individual, the greater the time,cost, labor, and psychological burden for that person to access health care. Stakeholders in Pakistan
suggested including a vulnerability index, which categorizes the risks among different populations interms of their physical, socioeconomic, and financial access, as part of planning and evaluating UHC
programs.
In Burkina Faso, Kenya, and Vietnam, stakeholders flagged that many
health facilities lack access ramps, appropriate bathrooms, andequipment to meet the needs of people with disabilities, which
prevents many from accessing care. Coverage for some services,such as mental health care, remain severely inadequate. Participantsin Bhutan, for example, noted the difficulties people with mental
health needs face in accessing necessary services due to the lack ofappropriate prioritization of mental health within UHC plans andprograms.

“Mental health is a coreneed in the current
situation…Governments
need to focus on thisarea more.”– Participant in Nepal

Out-of-pocket payments for pharmaceuticals and laboratory tests are also a major barrier to healthcare access; individuals are pushed into high medical debt when needing to access essential
medicines and services. The impact of out-of-pocket payments and catastrophic expenditure forhealth was especially highlighted in the experience of people living with NCDs and other chronic
conditions. Participants in the Caribbean focus group noted inadequate access to cancer screenings
and palliative care as well as insufficient coverage of NCD management. COVID-19 has further
widened these gaps. Notably, cost barriers to accessing care extend beyond the direct expenses ofhealth care services creating another challenge for achieving UHC. Stakeholders from Egypt, forexample, pointed out that the cost of transportation to a health facility often creates inequities inaccess – a concern that was also raised by stakeholders in India, Kenya, South Africa, and the US.
It is no surprise that those who are below and closest to the poverty line were flagged to be the mostimpacted by out-of-pocket payments. In many countries (Cambodia, Egypt, Georgia, Japan, South
Africa) it was highlighted that poorer populations tend to depend on public hospitals and are more
likely to face long waiting lists for some types of care. These groups are most directly affected byhealth provider shortages and quality gaps.

4Other barriers to care are the legal and regulatory frameworks in countries. In Colombia, stakeholders
highlighted improper practices in the management of resources. Civil society emphasized that themost vulnerable communities are the ones most affected by non-compliance with health sector
regulations, conflict between the interests of various health system agents, gaps in physicalinfrastructure availability, and the shortage of human resources, particularly in remote areas.
In Vietnam, transgender individuals may receive limited services because their identity documents
do not match their appearance. In Kazakhstan, many people including those who were previously
incarcerated or migrants do not have national identification or taxpayer numbers, which limits theiraccess to health and social services. The participants added that it is also difficult for people livingwith HIV to gain citizenship or permanent residence in the country.

“It seems that thepeople who haveaccess to health are
the people who canbuy access.”– Participant in
MexicoThis is an issue that was echoed in other countries, including Vietnam,
Japan, South Africa and the US, where some immigrants are left out ofbasic safety net programs due to legal status. In Bhutan, it was noted thatthe legal status of sex work makes medical services inaccessible to them;notably, this means cases of sexual abuse often go unreported. In
Pakistan, the Sehat Sahulat Program is intended to cover everyone without
any discrimination; however, the program does not always coverimmigrants, coal miners, persons currently experiencing homelessness,
people living with HIV, displaced populations, those who wereincarcerated, and people who use drugs.

Participants also highlighted the role of advocacy and practices that should be replicated to ensure
vulnerable populations are prioritized. In India, stakeholders noted the impact of advocacy for key
population groups: free antiretroviral therapy (ART) is now offered to people living with HIV under the
Ayushman Bharat scheme. In Kenya, there is an ear-marked program to cover the health care costs
for people living with disabilities.
A Free Health Care Policy was also adopted in Niger in2006 to provide health care to children under five andpregnant women. In Burkina Faso, there are measures inplace for the free provision of care to pregnant women andchildren under five, as well as for family planning,
vaccinations, ART, and treatment for TB. In Japan, while
welfare programs have been in existence, people were
often reluctant to access these services due to stigma;
during the COVID-19 pandemic, the government pushed
for additional support for welfare assistance andfacilitated access for more communities.

5“People became more sympathetic
toward the poor during the
pandemic and media coverage ofthe poverty issue increased. A
turning point was when the MHLW[Ministry of Health, Labour andWelfare of Japan] declared thatwelfare assistance is a right.”– Participant in Japan

Finding 3: Stigma is a barrier to health care access across countries that leave many people behind.
UHC cannot be achieved without systematic and intentional solutions to stigma and discrimination.
Participants across countries underlined that stigma and discrimination compounds the impact ofother vulnerabilities. In Kenya, for example, adolescent girls who are already at higher risk of HIV andgender-based violence may not seek family planning services because of the fear of stigma or
provider attitudes they may face. Survivors of gender-based violence face discrimination and may
also avoid care. Members of the LGBTQI+ community, people living with disabilities, people livingwith NCDs such as mental health challenges, and sex workers are particularly impacted acrosscountries by stigma, discrimination, and lapses in confidentiality policies.

“When you go to the maternity unit to give birth, themidwives will say: You are like that [disabled] so
how come you get pregnant?…As if we don't havethe right to children because of our disability.”– Participant in Burkina Faso

In Bhutan and Burkina Faso, for example,
the focus groups found that women withdisabilities face discrimination, especiallyin terms of their sexual and reproductive
health needs. In Vietnam, women, girls,
and transgender people affected by HIV
or TB reported discrimination whenseeking health care.

Stakeholders in Bhutan, Cambodia and Mexico noted that people who use drugs or alcohol do notreceive the same care and support as other patients, and are stigmatized by health care providers.
Similarly in Vietnam, the national health insurance program does not cover addiction treatment. A
known drug dependency is a plausible reason for an individual to be denied health services in
Kazakhstan. Similarly in Japan, people who use drugs hesitate to access medical and welfare
programs due to the fear of being reported; mental disorders caused by drug dependency are
regarded as crimes and affected individuals are excluded from social safety net programs likedisability pensions.
In Kazakhstan, people living with HIV noted that they pay highpremiums for health insurance and even if they are covered, they
are still often denied services due to provider attitudes andstigma. Nursing homes, boarding homes, and homes for people
with disabilities discriminate against people living with HIV.
Stigma and discrimination also prevent many sex workers fromaccessing necessary care. In Japan, for example, stakeholders
highlighted that sex workers face discrimination, prejudice, anda lack of public understanding.

6“I was scheduled for an
operation at provincial
hospital… [but after] I filled in
the form about my HIV status,
they refused to do it.”– Participant in Vietnam

REGULATE AND LEGISLATE
Finding 4: Policies that aim to achieve UHC are often not implemented effectively because ofrestricted budgets, gaps in coordination, and limited accountability mechanisms. Effective
legislation for UHC must be attached to adequate funding and include multi-stakeholder structures
for implementation.
Across Bhutan, Burkina Faso, Cambodia, India, Japan, Kenya, Lao
PDR, Pakistan, South Africa, Vietnam and the Caribbean
countries, there were laws, policies and strategies participants
acknowledged as being critical for UHC, but there were caveats
for each. Broadly community and CSO stakeholders noted that (1)coordination and collaboration among stakeholders is missing at
the ground level, which in turn means implementation is unclear
and not standardized; (2) UHC is not prioritized in budget andresource allocation, which limits the scope of policy
implementation; and (3) awareness and understanding of UHC in
the community is limited, which further hinders accountability
activities.

“UHC [policies from othercountries] may not all be
relevant to the country
context, however, therelevant ones may betranslated into the country’s
context or used as areference document.”– Participant in Bhutan

In Cambodia, for example, the Health Equity Fund, the National Social Protection Framework, and the
National Social and Security Fund were mentioned as mechanisms in place to expand equitablecoverage; however, the focus group emphasized that there were implementation gaps and thebarriers to care described above remain for vulnerable communities. In Egypt, stakeholders notedthat there are accountability mechanisms in place, such as a hotline for those facing discriminationin health care, but concluded that these must be strengthened for their full potential to be reached.
In Vietnam, the national health insurance is meant to cover 100% of health care costs but
stakeholders flagged that in reality, poor households need to pay around 20% of the costs, which isunaffordable to many.

“How can you read through a
50-page document and give
feedback…all in a two-hour
meeting?”– Participant in Kenya

Limited data is a barrier to both implementation and toaccountability efforts, particularly to assess equity. In India,
stakeholders stated there is limited or no data on transgender or
non-binary individuals, making it difficult to understand and relay
their access issues. In Kazakhstan, some vulnerable populations,such as those who were incarcerated, are not captured in UHC
data. Overall, the lack of data affects civil society’s capacity to
advocate and hold governments to account.

Across countries, there were calls for greater understanding and awareness around UHC and themultidimensional nature of vulnerability. Many vulnerable communities do not have the necessary
information about health care services and public assistance programs that exist. Stakeholders

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called on governments to widely disseminate UHC strategies, develop more opportunities andplatforms for community feedback, and prioritize multi-sectoral tracking and monitoring within its
regulatory framework. UHC policies must include clear processes and structures for civil society andcommunity engagement from their inception.

UPHOLD QUALITY OF CARE
Finding 5: The quality of health services is uneven within countries, across regions andcommunities. To uphold quality of care, governments should strengthen support to all healthproviders, especially community and frontline health workers, so that they are better able to deliverpeople-centered care to all.

“We are a highly inequitablecountry. Some populationgroups, for example
indigenous peoples, have a[quality] lag that is muchgreater...Geography is key;
northern states have good
health services and thesouthern and south-easternstates simply do not.”– Participant in Mexico

Poor quality of health services was highlighted by many
stakeholders in Burkina Faso, Cambodia, Colombia, Georgia,
Kenya, Pakistan, South Africa, and Niger. Where quality care exists,
it is not accessible to all. In most focus groups, stakeholders statedthat only those with the capacity to pay receive high quality andtimely health services.
In the Caribbean countries, stakeholders noted that data gaps
make it difficult to provide an evidence-based response on thequality of care. In countries where the poor quality of services wascited as a key concern, participants referred to the state of healthfacilities, availability of human resources, supply of medicines andother commodities, preparation for emergencies, and access totechnical support as areas for improvement.

Other challenges highlighted were those faced at the point of service delivery including ineffective
communication, long waiting times, poor diagnostic arrangements, and a lack of accountability.
Participants also mentioned the lack of respect for patients and lapses in ensuring privacy andconfidentiality.
Perceptions of quality are especially concerning for communities who experience multiple
vulnerabilities. In Bhutan, stakeholders noted that for population groups using drugs and alcohol aswell as people dealing with mental illness, the quality of care is “pathetic”; when free medication isprovided, it is not always trusted as high-quality medication. In Egypt and South Africa, it was notedthat there is a significant gap between services provided at private hospitals versus public hospitals.
Participants in South Africa noted the gross inequity between the care offered for health conditions,with NCDs being neglected when compared with HIV, TB, and STIs. In Mexico, stakeholders addedthat tertiary services are high quality, but primary health care services have long waiting times andlapses in ensuring a multidisciplinary approach.

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Across countries, the shortage of health care workers was
highlighted as a key barrier to upholding the quality of care.
The existing workforce, particularly community healthworkers, are inadequately remunerated and trained; thisbarrier has been made worse by the COVID-19 pandemic.
US stakeholders questioned if it is feasible to expect highquality in the wake of health provider shortages. The
discussion in the Caribbean highlighted staff attrition,
especially of nurses, and an undiversified staff mix aschallenges for quality care. Stakeholders in Mexico notedthat health providers do not work in the best conditions,with doctors receiving low wages and few incentives to stay
in primary health care.

“[Community health workers] are
critically important, especially insome communities …However
there needs to be increased
education and training for these
persons, to equip them with theskills to comfortably deliver[services]”– Participant in the Caribbean
RegionINVEST MORE, INVEST BETTER
Finding 6: Increasing health spending is important but not enough. In order to achieve UHC goals,
governments must prioritize investments in primary health care and the health care workforce
especially at the community level.

“There is no question that PHC
should be given the highest
priority by the government.
This is the greatest challenge
for health system of Georgia
to achieve UHC goals.”– Participant in Georgia

Community and CSO stakeholders across countries sharedperceptions on where governments should be investing toachieve UHC (Table 1), noting the importance of spending
better through rigorous planning of health-related spending.
Primary health care and the health workforce was the mostcommon response for increased prioritization across all focus
groups. Expanded spending on health systems strengthening
must be inclusive of the organizations, people and actions that
promote, restore or maintain health — including community-led
and community-based systems for health.

In Cambodia, Egypt, Georgia, Kenya, Lao PDR, South Africa, and Nepal, the focus groups felt that
health and health service delivery was not a priority compared to other sectors in terms ofgovernment spending. Notably, primary health care is not given as much attention as secondary andtertiary services. In Colombia and Kenya, stakeholders felt that investing in health providers andprimary health care in rural areas would improve access and reduce the burden on referral hospitals.
Participants across countries noted that the success of UHC policies is based on having a strong
primary health care system that would reach more people and reduce the need for more advanced
treatment by addressing health issues earlier. This includes services for the prevention, treatment,
care, and management of NCDs and HIV in primary care settings.

9

Countries with stronger primary health care systems were recognized to be responding better to the
COVID-19 pandemic by the participants in the Caribbean region, signaling the potential impact ofadditional investments. Across focus groups, the budget for primary health care and health workforce
shortages at this level were identified as the main barriers for improvement.
Civil society and communities in the focus groups notedthat investments in health workers, especially in community
health workers, are important to make sure the mostvulnerable people and communities are reached, especiallythose in rural and hard to reach areas. Focus groups acrosscountries highlighted the importance of formallyrecognizing community health workers and community
systems for health as an integral part of health systems.

“You cannot have UHC without
investing in PHC. It only leads toa backlog at the secondary andtertiary health care institutions.”– Participant in Kenya

Many community health workers are volunteers and do not receive adequate remuneration ortraining, which negatively impacts both the quality and scope of care. Governments have a bigger
role to play in building the health workforce and in protecting their service. Participants in Kenya
highlighted the issue of ‘brain drain’ and suggested that the health workforce can only be retained
through better protections and government prioritization.
Participants in Burkina Faso added that prevention and health promotion is important to encourage
the adoption of healthier behaviors and reduce the demand on health centers. This work is also
dependent on the availability of community health workers and community-led health systems.

MOVE TOGETHER
Finding 7: While most governments have committed to engaging civil society and communities inhealth policy, this engagement is often at a peripheral level. Countries must prioritize and create
purposeful structures for civil society engagement in all health-related decision-making and civilsociety groups must likewise be prepared to participate.
The focus groups identified many instances of CSO engagement in health policy at the national andcommunity levels in many countries, but all raised concerns about how meaningful this participation
is and how they must be improved. For example, stakeholders from various counties in Kenya notedthat when there are calls for civil society and community involvement, the registration process is pooror hasty; some calls are too technical with no efforts made to educate and widen participation. Thismeans channels for engagement are not inclusive and rarely adequately engage the community.
In Burkina Faso, civil society stakeholders similarly raised concerns that communications from thegovernment on opportunities to engage are often ineffective and feedback processes are limited
across the board. This sentiment was echoed in Cambodia, Egypt, Georgia, Kenya, Nepal, Pakistan,and South Africa: community members and CSOs have opportunities to engage in theory, but these10opportunities are not inclusive and their impact is perceived to be minimal. In the Caribbean region,
participants acknowledged that while civil society has a vital role in planning, promoting, andevaluating health care services, even more collaboration is needed.

“Just chatting to someone ina hut is not engagement. Is
that person aware of theirrights and policies? We must
make sure there are clear,jointly produced plans andwe must be jointly
accountable for theprocess.”– Participant in South Africa

Some stakeholders confirmed the existence of accountability ormonitoring mechanisms for UHC but noted that the processes
for feedback are not very clear. In Niger, while stakeholders
highlighted the existence of citizen-led monitoring mechanisms,
they raised questions on impact and called for more inclusive
social dialogue at all levels of the health system. Cambodianstakeholders presented as good examples of participatory
governance the implementation of the Social Accountability
Framework and community feedback mechanisms to improve
local health services as well as the National Committee for SubNational Democratic Development, an inter-ministerial
mechanism for promoting democratic development throughdecentralization.

Notably, stakeholders raised the importance of civil society engagement in decision-making rather
than limiting it to consultations after decisions are made. Government leadership is needed to create
environments to truly partner with civil society and communities to identify the issues and co-create
solutions.
In many focus groups, stakeholders also mentioned thatin addition to the governments’ role in creating better
opportunities for participation, civil society andcommunity groups should invest in improving theircapacity to engage for UHC advocacy and accountability.
They noted that there is often a lack of capacity for criticalanalysis of health policies and plans. Many civil society
stakeholders may not be from the health sector andrequire more technical support. In addition, many are often
volunteers with limited time and availability for sustained
participation. There is also a lack of understanding aroundhow CSOs can hold governments accountable tocommitments once made.

“…Country Coordinating
Committee of the Global Fund tofight AIDS, TB and Malaria has
provided a platform forrepresentatives of affected
communities by HIV, TB and
Malaria fully engage in the grant
design, planning, budgeting,
implementing and grant
mentoring.”–Participant in Cambodia

In Kenya, stakeholders noted that it is up to CSOs to ensure they are in the conversation and truly
represent their constituencies, as well as to monitor the impact of their advocacy. In Nepal, it wasstated that CSOs need to do more as the voice of the people and that religious leaders should also
be playing a role as spokespeople. Stakeholders in the US also highlighted that there is an onus on
the public to call on leaders, write to legislators, and raise awareness of issues in health care access.

11This was flagged as a two-sided issue: governments need to invest in civil society, create enabling
environments for participation, and fund civil society responses while civil society organizations must
scale-up their health policy analysis, advocacy, and accountability capabilities.

GENDER EQUALITY
Finding 8: The impact of health vulnerabilities and gaps in health systems varies widely by gender
identity across all settings. This inequity can only be addressed by gender-sensitive health policies
and programs, which in turn requires diverse representation in leadership at the global, national andsub-national levels.
Across all focus groups, participants noted that women and girls are disproportionately impacted by
the gaps in health care systems, whether these are geographical barriers, financial barriers, or quality
gaps. For example, transportation costs to health centers were often cited as a critical issue forwomen and girls in accessing care. In Japan, participants specifically mentioned that unstable
employment and declining wages have had a notable impact on women and their ability to accesshealth care.
Patriarchal attitudes as well as cultural factors and religious
beliefs were raised as major barriers for women and girls inaccessing health care; in many settings, they may not be able to
go to a health clinic without permission or accompaniment by ahusband. In Egypt, Colombia, Japan and South Africa,
participants raised the issue of violence against women and girls
as a critical public health problem that is not prioritized due tocultural factors. At the same time, attitudes and culture also
affect men’s access to care. Participants in the Caribbean noted
men’s reluctance to access health care at clinics and theimportance of bringing services to them.

“One of the transgenderpatients needed dialysis but
there is no separate ward forthe trans-community and when
she was taken to hospital, bothpatients in both the males andfemale wards requested to shift
her to another ward."– Participant in Pakistan“Very few adolescent girls
attend health centres
because of their social
isolation, their lack ofknowledge and financial
means, and their restricted
freedom of movement.”– Participant in Niger

Individuals who are non-binary or transgender facecompounding vulnerabilities when accessing care.
Stakeholders across the board agreed that few healthsystems plan services to be gender sensitive. In Kenya, Lao
PDR, and Pakistan, for example, basic health forms often
require patients to identify as male or female. In Cambodia,
Colombia, and Lao PDR, health services for LGBTQIA+ groups
were described as unfriendly and not responsive to theirneeds. In Bhutan, despite its strong national health program,stakeholders highlighted transgender individuals will notreceive support for hormone replacement therapy and they
have limited access to mental health care. In Georgia and12South Africa, participants concurred that transgender individuals often face abuse, violence, anddiscrimination. Stakeholders in the Caribbean noted that while LGBTQIA+ communities do facebarriers of stigma and discrimination, there are also best practices in the region such as nongovernmental organizations running clinics that are “safe spaces” and provide gender-sensitive care.
The inequity in health care access may be predicted by the starkly unequal gender representation in
health decision-making and public policy. In the US, participants flagged that while health care
workers in the country and across the globe are mostly women, decision-makers are predominantly
men. Without representation in leadership, the challenges faced by women and gender minorities
exist as a secondary problem with secondary solutions. Civil society stakeholders noted that diverse
leadership is needed to overhaul the system and address the structural, socio-cultural, economic, andphysical barriers that thwart gender equality in health care access.

EMERGENCY PREPAREDNESS
Finding 9: While the full impact of the COVID-19 pandemic is yet to be seen, it is clear that the crisis
has exacerbated existing barriers to access. To prevent further losses, governments must focus on
the most vulnerable populations first in the pandemic response and recovery.
Many civil society and community stakeholders noted that
universal access to some health care has been made a priority
during the COVID-19 pandemic, with governments swiftly acting interms of education and awareness, case detections, screening,
testing, treating and vaccine roll-out. However, the focus on
COVID-19 often came at the cost of other health services, andparticipants raised concerns over setbacks in health gains madeover the last decade.

“All vulnerable groups havebecome more invisible
during the COVID-19
pandemic."– Participant in Georgia

Across countries, CSO and community stakeholders reported the disruption of primary health careservices, as well as services for HIV and TB, NCDs, sexual and reproductive health during the
pandemic and lockdown efforts. Overall, the most vulnerable populations were most impacted bythese disruptions. In Bhutan, certain population groups seem to receive less focus and support, suchas persons using drugs and alcohol. In the US, COVID-19 catalysed a shift towards telehealth, but
stakeholders highlighted the challenges of a digital divide, both in terms of unequal internet accessand digital literacy. This finding was echoed in the focus group in Colombia, where stakeholders
pointed out that many could not access tele-consults.
The pandemic also exacerbated the shortage of health workers, and the existing workforce was often
reassigned to COVID-19 at the detriment of ongoing health service delivery. Participants also notedthat many health systems were ill-equipped for the high volume of COVID-19 patients. In addition,community-based activities for health promotion and prevention were hindered or completely paused
during the height of the pandemic in many countries, including in Niger and Kenya.

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“About three years ago, we wereapproaching universal coverage…
between the contributory plan
[employee-based] and thesubsidized plan [informal or lowincome workers], it reached 95%.
But with the recent job losses, now
there is a very high margin of
population that does not havebasic health services and they can
only access them for serious
emergencies."– Participant in Colombia

The fact remains that the full impact of the pandemic is yet
to be known but delays in preventive and continued care are
expected to have long-term impacts on health systems,
while the anxiety caused by lockdowns and the pandemic
have heightened other challenges. Stakeholders in Burkina
Faso mentioned that TB patients did not want to go tohospital for treatment due to the stigma associated withtesting positive for COVID-19, leading to a break in theirtreatment. Likewise in Georgia, those needing treatment for
NCDs have been hesitant to access health care due to fearof COVID-19 infection – a finding echoed in Kenya, Lao PDR,South Africa, and Mexico, where many patients with NCDs
or HIV have missed appointments during the pandemic. In
Vietnam, stakeholders also flagged that all health checkups and treatment have become more complicated due to
COVID-19 screening at health facilities.

The secondary impacts of the pandemic have increased vulnerabilities across all settings,
contributing to rising rates of unemployment, poverty, gender-based violence, food insecurity, mental
health concerns, unplanned pregnancies, substance abuse, and more. Even in countries that havemade large strides in UHC, such as Colombia, the crisis has pushed more people into poverty andinto greater risk of falling out of health coverage. Urgent prioritization is needed to prevent further
increases in these threats to health and additional interruptions to life-saving health service delivery.
In the recovery and response, these compounded vulnerabilities must be addressed in conjunction
with delivering COVID-19 testing, treatment, and vaccines.
Lastly, stakeholders across countries noted that the
pandemic caused fear among communities andmisinformation was rampant. Participants in the US
specifically discussed how misinformation has
impacted trust in scientific research and the medical
system more broadly. This too will have lasting
impacts for years to come and further underlines theimportance of civil society participation in healthsystem decision-making to build trust and create
impactful policies and programs.

“…a lot of patients [especially with NCDs
are reluctant to access care] because thefirst thing is that if you cough or sneeze or
have shortness of breath… you are going
to be sent to the ‘COVID hospital’, so they
are not coming, they don’t want to go to
the COVID hospital."– Participant in the Caribbean Region

In some countries, CSOs have stepped up to bridge health service gaps caused by COVID-19. In Egypt,
CSOs raised awareness in marginalized areas, as well as offered medical care, psychosocial support
and guidance to PLHIV and other vulnerable groups. Similarly in the Caribbean region, stakeholders
highlighted the work of CSOs and non-governmental organizations in filling the gaps, especially in

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following up with patients through social media. In Georgia, CSOs took action throughout the
pandemic for many types of health service delivery, but stakeholders noted that it was difficult toregain the ground that was lost for vulnerable communities. Stakeholders in Niger also highlighted
how CSOs showed resilience in trying to maintain activities throughout the pandemic. However, these
efforts rarely had institutional support. Participations called on leaders to invest in community-led
responses and structures for both the pandemic response and strengthening the pathway to UHC.

REACHING UHC: THE WAY FORWARD

The 19 focus groups held in 2021 brought together civil society and community stakeholders fromthe national and sub-national health space to discuss the state of UHC. In some groups, government
representatives and implementers also joined the discussion. Both in countries that have madesignificant progress toward UHC through national health plans or coverage schemes and in countries
that still have many more steps to take, the discussions unveiled that some communities face morebarriers to accessing quality health care than others. National leaders must intensify their focus onequity and prioritize communities facing additional vulnerabilities first.
The implementation of UHC policies and plans remains uneven and, in many cases, uncoordinated.
There is a need for structural changes to coordinate across sectors and across stakeholders to not
only respond to and recover from the pandemic, but also build back better health systems. Civil
society and communities must be central to the planning, implementation, and monitoring of healthpolicies and programs. It is these groups who are best placed to identify challenges on the ground,provide evidence on implementation like on the ground, and support the alignment of often-lofty
legislation to the lived realities of individuals, families, and communities.
Health care spending should be increased. As the COVID-19 pandemic has made apparent, strong
health systems and population health are necessary precursors to the effective functioning of all
aspects of society and government, including national economic systems. It is therefore clear that
adequate investments in health cannot be eschewed. Civil society and communities note that it is
not enough to just increase spending on health. Rather, the focus of increased public spending on
health must be on strengthening primary health care, including prevention and health promotion
services. Primary health care is fundamental to achieving UHC so that all people can access thehealth services they need at the earliest possible moment in the settings where they are located.
The health worker shortage must be urgently addressed. This includes institutionalizing the role ofcommunity health workers, ensuring adequate remuneration, providing training and protections, anddeveloping plans for retention. Governments must prioritize health care workers at all levels so thatthey are available to deliver people-centered health care to all. Achieving UHC is not possible without
the people who can deliver care.

15Specific recommendations for national political leaders highlighted by the civil society andcommunity focus group participants in these four key areas of action are presented here. As the UN
High Level Meeting in 2023 approaches and countries gear up to assess the progress made thus far,these insights from people on the ground are critical guideposts for action.
Table 1: Priority Areas to Increase Government Spending on Health

COUNTRYPRIORITY AREAS IDENTIFIED IN THE FOCUS GROUPS

BhutanResearch
Medical services and facilities for alcohol addiction

Burkina Faso

Prevention and health promotion for tobacco and alcohol use
Water, sanitation and hygiene (WASH)
Community health, including health promotion
Care for people living with disabilities and the elderly, including palliative andrehabilitation careCambodia

Health provider workforce in primary health care settings
NCDs at primary health care settings
Supply chains
Health insurance and social protection schemes

Colombia

Health promotion and disease prevention
Improving hospital infrastructure
Rural health
Mental health services

Egypt

Mental health services
Geriatric programs
Organ transplantation

Georgia

Primary health care
Health promotion and disease prevention

India

Emergency preparedness

Japan

Public health and infectious disease control
Disaster response
Education and health communications

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Kazakhstan

Programs for prisoners, refugees and their families

Kenya

Preventive and promotive services
Primary health careCommunity Health Workers
Developing health facilities in rural and remote areas

Lao PDR

Expanding health services including laboratory services
Social protection programs
Community mobilization

Nepal

Health facilities in rural areas

Niger

Reducing the cost of care at the point of services

Pakistan

Human resources, equipment, new technology, and tele-health
Emergency preparedness
Primary health careSouth Africa

Medical infrastructure and equipment, human resources
Health literacy and education for communities
Accountability measures and independent monitoring systems
Health responses during political and economic instability

United States

Education
Health providers including mental health practitioners, school nurses, community
health workers and home caregivers

VietnamLong-term health care services for the elderly
Addiction treatment, family planning services, services for LGBTQIA+
Support mechanisms for prisoners and people living with disabilities

Caribbean
RegionStrategic human resource planning, including training and retention of nurses
Education on wellness, nutrition, physical activity
Timely access to medicines
Primary health care17

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Civil Society Engagement Mechanism for UHC2030 (CSEM)
www.csemonline.net | csem@msh.org
December 2021