Key Findings

Global leaders appear poised to approve the creation of a new financing mechanism for pandemic preparedness and response (PPR) activities. Support for such a mechanism grew as the profound fault lines exposed by the COVID-19 pandemic became clearer. The U.S. government has strongly supported the idea of creating a financial intermediary fund (FIF) for PPR at the World Bank, a proposal now endorsed by the G20, the WHO, and others, with the World Bank expected to vote on such a proposal this month. Despite this momentum, however, many questions remain about a new FIF including its governance and operations and the extent to which civil society will be formally included. A white paper on the FIF, recently released by the World Bank, contains a brief mention of civil society as potential observers to a FIF governing board, though some have critiqued that as insufficient. To help inform ongoing discussions, we sought to examine and draw lessons from existing institutions on how they engage with civil society formally, as part of their governance, as well as through other avenues. We analyzed 14 major multilateral global health and related institutions to assess how civil society, including from the global South, has been engaged in their governance, implementation/programming, and monitoring. We examined the following metrics of civil society inclusion to assess more formal engagement: board representation; voting rights; global South representation required; formal representation on committees; support for participation in governance; and requirements to fund civil society as part of program implementation. For those institutions that included formal board representation, we also looked at the share of seats reserved for civil society. Our key findings are summarized as follows:

• Civil society inclusion and engagement in the governance and operations of multilateral global health institutions has grown over time, especially since the Millennium Development Goals era, and as part of the global HIV movement in particular.
• The degree and nature of civil society engagement varies considerably. Three of the 14 institutions met all six metrics of formal civil society inclusion assessed (the Global Fund to Fight AIDS, Tuberculosis and Malaria; the Global Partnership for Education; and the Stop TB Alliance) and three met five metrics (GAVI, UNAIDS, and Unitaid). On the other end of the spectrum, three institutions met none (the Coalition for Epidemic Preparedness Innovations; the RBM Partnership to End Malaria; and the World Health Organization).
• On board representation specifically, six of the 14 institutions have formal seats for civil society, the strongest measure of inclusion, ranging from 3.5% to 15% of board seats. Five of the six provide voting rights, and four of the six specify that at least some portion of civil society representation be from the global South. In addition, the six with formal board seats also require civil society representation on their primary governance committee(s).
• All 14 multilateral global health initiatives, including those with no formal civil society representation on their governing board or committees, provide other opportunities for civil society engagement. Specific approaches and processes employed can bolster or limit civil society’s influence in governing decisions. For example, civil society representatives who are able to participate in advisory or working groups, or regional subgroups, can feed into and shape institutional governance. Other avenues, such as those that are more ad hoc, are seen as providing fewer opportunities for engagement or influence.
• At the same time, and even among those initiatives with formal representation on governing boards, civil society representatives confront a number of challenges, including a lack of financial and administrative support while managing a substantial burden of work, a steep learning curve for new representatives, and difficulties representing broad constituencies fairly and effectively.
• To address some of these challenges, some initiatives, but not all, have created mechanisms to directly support civil society engagement in governance, implementation and/or monitoring activities. Many of these have been instituted and expanded only in recent years.

Taken together, these findings offer new insights into how civil society has been included in major multilateral global health and related organizations that are in operation today, including the trend towards greater and more formal inclusion over time, and may inform ongoing global discussions about the creation of a new financing mechanism for PPR.

Introduction

Global leaders appear poised to approve the creation of a new financing mechanism for pandemic preparedness and response (PPR) activities. Support for such a mechanism, intended to coordinate and direct additional resources for PPR, particularly in low- and middle-income countries (LMICs),  grew as the profound fault lines exposed by the COVID-19 pandemic became clearer. For its part, the Biden Administration has strongly supported the idea of creating a financial intermediary fund (FIF) for PPR at the World Bank and has already pledged $450 million and requested an additional $4.75 billion more from Congress. Support from other donors was pledged at the second Global COVID-19 summit, convened by the U.S. and several other governments, and the idea has been endorsed by the G20 and the World Health Organization. Most recently, the World Bank released a white paper outlining how a FIF might function and a proposal to establish the mechanism will be submitted for approval to the Executive Directors of the World Bank this month, after which the fund could begin to operate by the end of 2022.

Despite this momentum, however, many questions remain about a new FIF, including its governance and operations and how representative and inclusive it will be. Some global health stakeholders have raised questions as to whether and how civil society might be formally engaged in the governance of the FIF, as well as its design, implementation, and monitoring. The primary global health structure set up to respond to COVID-19 – the Access to COVID-19 Tools Accelerator, which includes COVAX, it’s vaccine arm designed to accelerate the development and manufacturing of COVID-19 vaccines and provide equitable access – has been critiqued for its lack of formal and meaningful civil society and community engagement, especially of representatives from the global South. In May of this year, the Independent Panel on Pandemic Preparedness and Response found that consultations to date with non-state actors on policy-making processes for pandemic preparedness have been “rushed, pro forma, and frankly, abysmal.”

In its white paper on the FIF, the World Bank states that it seeks to balance “inclusivity with simplicity and efficiency, to support streamlined and efficient decision-making and implementation”. The white paper contains a brief mention of civil society, as potential observers to the FIF governing board but not as formal members, as follows: “the observer pool could be broadened out, as needed, to include other multilateral institutions, civil society organizations (CSOs) and/or the private sector” and that “CSO observers could be included through a constituency-based approach”. The Bank solicited input on its white paper, and several critiques, including calls for ensuring substantive and formal civil society engagement in the governance and design of a FIF, have been submitted.¹  The U.S. government, in its submitted comments, has been less clear on this point, saying that the FIF “should balance inclusivity and agility” and that non-governmental stakeholders could be included either as Board members or observers.

To help inform discussions regarding the creation and design of a global pandemic preparedness fund, we analyzed major multilateral global health and related institutions to assess how civil society, including global South organizations, has been engaged in their governance, implementation/programming, and monitoring. We examined 14 such institutions ranging from those that are affiliated with the United Nations, FIFs based at the World Bank, and/or independent organizations. For purposes of our analysis, we defined civil society to include representatives from non-profit or otherwise non-commercial actors who are not directly affiliated with a government and who are not acting in a solely individual capacity. Our analysis is based on a literature review, a review of official governance and other institutional documents, and interviews with a range of stakeholders (see methodology for more detail).

Methodology

We performed a broad literature review on civil society and global health governance and identified 14 prominent, ongoing multilateral global health and related initiatives for inclusion in this analysis (see Table 1). Overall, five of the 14 models examined are FIFs housed in some manner at the World Bank. The others are multilateral efforts that are either independent (6) or part of the United Nations (3), although some of the independent entities are formally hosted by Unite Nations agencies. While we focused on multilateral initiatives, it is important to note that some bilateral donor governments have also made efforts to engage civil society in development planning and programming, including for global health. PEPFAR, the U.S. global HIV/AIDS program and largest initiative focused on a single disease, stands out in particular in this area, given both its size and because it has moved to enhance the engagement of civil society in its bilateral program implementation over time. As such, it also may offer some lessons and models for future PPR efforts (see Box 2).

For each of the global health initiatives included in this analysis, official governance documents (e.g. by-laws, terms of reference of governing bodies, website information regarding governing and advisory bodies) were studied to ascertain if, how, and to what extent civil society is officially included in the organization’s governance, implementation, and monitoring. This document review was supplemented by interviews with 22 individuals who are either involved in or have working knowledge of the governance processes of these organizations. The interviews provided additional details on the dynamics of the governing bodies, other avenues for civil society input into decision-making, particular challenges and opportunities experienced by civil society with respect to engagement in governance, and ways that civil society may be engaged (beyond governance). Both during the document review and key informant interviews, the analysis paid particular attention to the engagement of civil society representatives from the global South, which includes the bulk of countries that are the recipients of outside assistance. We examined the following metrics of civil society inclusion to assess more formal engagement: board representation; voting rights; global South representation required; formal representation on committees; support for participation in governance; and requirement to fund civil society as part of program implementation. For those institutions that included formal board representation, we also looked at the share of seats reserved for civil society.

For the purposes of this analysis, civil society was defined to include representatives from non-profit or otherwise non-commercial actors who are not directly affiliated with a government and who are not acting in a solely individual capacity. Multilateral institutions or public-private partnerships affiliated with multilateral bodies were not considered as civil society. Likewise, major private funders of organizations (such as private foundations) were not considered civil society for our purposes here. Organizations were deemed to have formally included civil society on their board only if governance documents specifically reserved seats for civil society representatives.

Findings

1. Civil society inclusion and engagement in the governance and operations of multilateral global health institutions has grown over time. A general trend in global health has been one of greater recognition over time of the importance of engaging with civil society actors.²  While older UN-based organizations such as WHO and GPEI feature little civil society role in their formal governance structures, even to this day, some of the institutions founded more recently, such as the Global Fund, Stop TB, Unitaid, and Gavi, engage civil society more prominently in their governance structures (see below). There are also a range of ways in which civil society actors engage in multilateral global health institutions, including both directly (through board participation, engagement in rule-making processes, and involvement in capacity-building for implementation) and indirectly (by helping set the global health agenda, generating knowledge and strategic information, and monitoring implementation of global health policies).³  The literature has found that civil society actors can play an important role in helping to ensure that global health policies and programs are informed by the lived experiences of the people most affected by health challenges, a view underscored by stakeholders interviewed. Official documents of many, but not all, of the initiatives included in this analysis reference a range of benefits derived from engagement with civil society (see Box 1).-The literature also supports the idea that civil society engagement improves global health processes and outcomes. Studies have found, for example, that civil society engagement has driven adoption of breakthrough innovations in health service delivery, including home management of malaria and community delivery of HIV treatment. Direct engagement of civil society in the governance of a global health organization may also help create a constituency that is invested in the organization’s success and will advocate on its behalf. For example, civil society engagement helps legitimize policies, mobilize resources for global health interventions and enhance the accountability of global health efforts (through its so-called “watchdog” role).⁴  In recent years, as the value of community-led health monitoring has become increasingly recognized, there has been a growing push to institutionalize and integrate civil society’s generation of strategic information within health monitoring and evaluation systems, such as, for example, with the Global Fund’s embrace of community-led monitoring for HIV.

2. Multilateral global health institutions that arose during the Millennium Development Goals⁵  era, and from the HIV movement in particular, are more likely to prioritize civil society engagement. Previous analysis has found that intergovernmental institutions rooted more firmly in the global architecture that arose following World War II (such as United Nations entities and the World Bank) tend to be less likely to engage civil society in their governance compared to initiatives that arose after 2000, during the Millennium Development Goals (MDG) era (such as the Global Fund and Gavi). This pattern was confirmed by our analysis, as the entities least likely to formalize civil society involvement governance are either UN agencies (e.g. WHO) or certain financial intermediary funds housed at the World Bank (e.g. GEF, GFF). However, this pattern is not universal. UNAIDS, for example, is a UN body with five NGO representatives on its governing Programme Coordinating Board, but is unusual among UN organizations in this regard and its inclusion of civil society is firmly rooted in its origins in the HIV movement. It is also one of the more recently established UN agencies.-In some analyses of civil society engagement on global health governance, the response to HIV has been cited as a catalyst for greater attention to civil society engagement in the global health field. The Denver Principles, for example, articulated by people living with HIV in the earliest years of the HIV pandemic, as well as the endorsement in 1994 by 42 countries of commitments for the Greater Involvement of People Living with HIV/AIDS (GIPA), highlighted the right of people living with HIV to participate in decision-making processes that affect their lives. Among the initiatives examined here, those with a focus on HIV and TB tend to have greater engagement of civil society in governance, including through formal board representation, than global health initiatives focused on other health issues.
3. The degree and nature of civil society engagement varies considerably, with three of the 14 institutions meeting all six metrics of formal civil society inclusion assessed, and three meeting none. The Global Fund, GPE, and Stop TB met all six metrics while GAVI, UNAIDS, and Unitaid met five. On the other end of the spectrum, CEPI, RBM, and WHO met none of the criteria (although they included less formal avenues of engagement). See Table 2.
4. On board representation specifically, six of 14 have formal seats for civil society, the strongest measure of inclusion. The six are GAVI, the Global Fund, GPE, Stop TB, UNAIDS, and Unitaid. Five of these institutions (all but UNAIDS), provide voting rights. The Global Fund, GPE, Stop TB, and Unitaid each reserve 15% of voting seats for civil society representatives while Gavi reserves 3.5%. Although civil society representatives on the UNAIDS board do not have a formal vote, 13% of all board seats (including non-voting seats) are reserved for civil society representatives, as specified in governance by-laws. See Figure and Table 2.-The eight organizations that do not include civil society formally in their primary governance bodies are: ACT-A (no stand-alone governance mechanism, though its Principals Group includes some entities that do formally include civil society on their governing boards such as Gavi, the Global Fund and Unitaid); CEPI (which reserves one seat on its board for a non-profit/NGO investor, but not a civil society representative), GFF (no civil society representatives on the principal Trust Fund Committee), the GEF, GPEI, MPP, RBM Partnership to End Malaria, and WHO. Some of these eight organizations (e.g. MPP, RBM Partnership) have civil society members serving in their individual capacity on their current governing boards, but do not expressly dedicate a seat for civil society, and all do involve civil society in other ways (see below).

Several multilateral global health initiatives have seen their civil society engagement evolve over time. For example, at the earliest stages of its organizational development, affected communities did not have voting rights on the board of the Global Fund, but community representatives were granted full voting rights in 2004. In 2022, the Stop TB Partnership is restructuring its governance to ensure that representatives from the global South (including both government and civil society) occupy a majority of board seats and that robust representation of civil society and affected communities is further institutionalized.

5. A subset of multilateral global health initiatives that formally include civil society on their boards (4 of 6) specifically reserve seats for civil society from the global South. GPE, the Global Fund, and Stop TB allocate one board seat for developed country NGOs and another for developing country NGOs. The five NGO delegations on the UNAIDS Programme Coordinating Board include three civil society representatives from the global South and two from high-income countries or countries in transition.
6. Whether civil society is formally included on board committees, as required by 6 of the 14 institutions examined, is also an important determinant of civil society’s influence. According to key informants, much of the substantive work conducted by the governing boards of multilateral global health initiatives occurs in board committees and working groups. The six institutions that have board seats for civil society also require civil society representation on formal governance committees. The executive committee of the Stop TB Partnership board expressly reserves one seat for TB-affected communities. The NGO delegation of the UNAIDS Programme Coordinating Board has a seat on the PCB Bureau, which plans the board’s biannual meetings and oversees the board’s intersessional decision-making processes. Gavi mandates civil society representation on its governing board’s committees for governance and market-sensitive decisions. The Global Fund’s operating procedures require that each constituency be represented on at least one standing committee and all standing committees include both implementer and donor group members. GPE and Unitaid also require civil society representation on their main governance committee or committees. In addition to formal representation on primary governance committees, four other organizations – Act-A, the GFF, GPEI, and MPP – include civil society representation on an adjacent entity, such as an advisory group (e.g., Act-A’s Facilitation Council or MPP’s Expert Advisory Group).-The timing of board processes may occasionally affect the ability of civil society to influence the agenda of global health initiatives. In the case of the GFF, which has no civil society representation on its formal decision-making body (the Trust Fund), the Investors Group, which includes civil society, meets prior to regular meetings of the Trust Fund, enabling decisions on GFF funding by the Trust Fund to take account the findings and recommendations of the Investors Group. One key informant with experience working with the GFF advised that in part because of this, civil society is able to have some influence in GFF decision-making, even without a seat on the decision-making Trust Fund committee.
7. All 14 multilateral global health initiatives, including those with no formal civil society representation on their governing board or committees, afford other opportunities for engagement. Beyond formal board representation, other avenues for engagement include a presence on committees (other than the primary governance committee), such as technical advisory working groups or other sub-committees, as well as involvement in temporary and issue-specific meetings and discussions. As mentioned above, while the GFF’s governing Trust Fund Committee includes no civil society representation on its board, its Investors Group, which advises the Trust Fund Committee and supports the GFF’s work at country level, includes two seats for civil society (one from an eligible country and one from a donor country) as well as one representative of the youth constituency. The GEF’s governance documents note the ability of civil society to participate in its civil society forum, workshops and meetings of GEF’s Country Support Program, and relevant task forces and working groups. ACT-A includes two civil society representatives on its Facilitation Council, which advises its Principals Group, and civil society representatives also participate in working groups for each of ACT-A’s four pillars (diagnostics, therapeutics, vaccines and health systems and response). Civil society representatives participate in MPP’s Expert Advisory Group and Scientific Advisory Panel. Unitaid’s consultative processes for its market-shaping interventions frequently include civil society. WHO has entered into official agreement with more than 200 non-state actors, who have the ability (within limits) to attend and speak at World Health Assembly meetings, and civil society organizations are frequently invited to participate in WHO processes to develop normative guidance on specific issues and topics. While these other avenues for collaboration and engagement are present in most initiatives, key informants have indicated that more informal participation is rarely as impactful as fixed representation on a governing board. They noted that the ability of civil society to speak at Health Assembly meetings is sharply limited, with civil society speakers limited to brief remarks regarding agenda items that they had no role in formulating. Informants advised that decisions of the Health Assembly are frequently negotiated in advance between Member States, further diminishing the meaningfulness of civil society input into decision-making by the body charged with setting global health norms.
8. Among the five World Bank FIFs included in this analysis, civil society engagement also varies. The Bank is a trustee for numerous FIFs – ranging across development areas including prevention and treatment for communicable disease, climate change and food security. FIFs aim to leverage public and private resources to support international initiatives, including provision of global public goods. From FY2008 through FY2019, the number of FIFs at the World Bank rose from 12 to 27. The five FIFs included in this analysis – CEPI, GEF, the Global Fund, GPE, and the GFF – vary broadly in their models and in the degree of the Bank’s involvement in governance and decision-making. CEPI and the Global Fund, for example, effectively operate as independent entities, with the World Bank only providing financial services and serving on their governing boards as a non-voting member. By contrast, the Bank has a much more central role in the governance of some other FIFs. For example, the Bank chairs the Trust Fund Committee of the GFF. For the GPE, the Bank occupies a seat on the governing board that is reserved for multilateral and regional development banks. At the GEF, the World Bank helps mobilize resources, administers the trust fund, disburses funds, prepares financial statements, and monitors application of GEF funds.-Just as the FIFs have diverse operating models, FIFs also have broadly divergent modes of engaging with civil society. As mentioned above, 15% of GPE and Global Fund board seats are occupied by civil society, while CEPI, the GEF, and the GFF have none. Governance of the GEF, for example, is wholly intergovernmental, with ministerial officials representing a series of regional constituencies. Also, as noted earlier, all five FIFs do involve civil society in other ways, even the three that do not include civil society on their boards.
9. Governance rules and practices, including whether board members represent constituencies or serve in their individual capacity, can affect civil society’s influence in multilateral global health initiatives. Civil society’s ability to influence multilateral global health institutions depends in part on having a critical mass of representation on the governing bodies that chart strategic directions and make decisions on behalf of these institutions. As noted, a number of multilateral global health initiatives have no civil society representatives on their governing boards, while others allow but do not mandate civil society inclusion. Governing rules or practices may affect the weight that civil society board representation has within a governing body. For example, the five NGO representatives on the UNAIDS governing board do not have voting power, although the Terms of Reference for the Programme Coordinating Board’s NGO delegation provides that “[t]hough technically NGOs do not have ‘the right to take part in the formal decision-making process’ of the PCB, in practice NGOs fully participate and are essential, respected stakeholders in the decision-making process.”-The capacity in which civil society representatives serve on governing boards varies among multilateral global health institutions. For most that have civil society on their governing body, board members represent constituencies. The Global Fund, Stop TB Partnership, and Unitaid reserve seats for representatives of communities affected by the diseases these organizations address, and the Global Fund reserves a board seat for NGO constituencies from developed and developing countries, respectively. UNAIDS reserves individual NGO seats for five regions (Africa, Asia/Pacific, Europe, Latin America and the Caribbean, and North America). In the case of the GPE, one civil society seat is set aside for the constituency of teachers. Where board seats are reserved for specific civil society constituencies, members are elected by their respective constituency and are expected to consult with their constituencies as part of their board responsibilities.-More rarely, civil society representatives serve on governing boards in their individual capacity. This is the case for the Medicines Patent Pool. UNAIDS governing rules also provide that NGO members serve in their individual capacity, although in practice, they operate as representatives of their respective regions and solicit considerable input from stakeholders in their respective regions.-The Global Fund’s unique model for formal decision-making serves to empower civil society to affect the organization’s funding decisions and strategic direction. Where a consensus cannot be reached on the board and a vote is called, Global Fund by-laws require that motions achieve a two-thirds majority in both the donor group (which includes eight donor countries plus one private sector seat and one private foundation seat) and the implementers group (which consists of seven developing county seats, two NGO seats, and the community representative). This effectively means the three civil society seats may, by persuading one of the developing country seats to vote with them, achieve a ”blocking minority” on any motion before the board. Informants cited this somewhat unusual arrangement as a key reason why civil society plays an especially influential role on the Global Fund board.
10. At the same time, and even with formal involvement, civil society representatives on the governing bodies of multilateral global health initiatives confront a number of challenges. Key informants, many of whom are civil society representatives who are serving or have served on the governing boards of multilateral global health initiatives, cited an array of challenges that civil society board representatives face. Numerous informants pointed to the enormous time commitment required to serve on these boards, including review of voluminous board meeting materials and participation in board committees and working groups. Unlike the officials of national ministries and donor agencies, large philanthropic foundations, and multilateral agencies who serve on these boards, civil society representatives typically lack staff support to synthesize substantial bodies of data and analysis.-In addition, despite the substantial work burden associated with board membership in a multilateral global health body, civil society board members are often uncompensated for these efforts. Again, this distinguishes civil society representatives from most other board members, whose service on governing bodies is typically regarded as part of the job for which they are compensated. According to informants, uncompensated board work can be especially burdensome for civil society representatives from the global South, who often lack substantial institutional backing for such work. A group of civil society advocates who assessed the evolving global health architecture recommended that civil society and community engagement be specifically and adequately resourced, in order to enable civil society representatives to engage fully with governance processes and with their global constituencies.-According to key informants, civil society representatives who join the boards of multilateral global health initiatives often confront a sharp and daunting learning curve, and they sometimes receive limited training or ongoing support to help them navigate dynamic and often-complex governing processes. A common practice among global health initiatives with civil society membership on the board is to appoint two civil society representatives per seat – one serving as the formal board member, and one as alternate. This approach theoretically allows the alternate member to learn “on the job” before formally filling the board seat, although key informants said that the steady turnover in civil society board seats makes it difficult for civil society board blocs to cohere and become proficient in navigating board processes. Several key informants cited the civil society delegations to the Global Fund as examples of constituencies that have become sufficiently mature over time to wield considerable influence in institutional governance.-Where civil society members represent constituencies, the breadth and diversity of these constituencies can sometimes make it challenging for civil society board members to remain abreast of the full array of constituency issues and concerns. For example, the Global Fund board member representing affected communities is ostensibly representing people living on multiple continents and living with or affected by three diseases, each of which has a diversity of key affected populations.
11. To address some of these challenges, several multilateral global health initiatives have created mechanisms to support civil society engagement in governance, implementation and/or monitoring. Multilateral global health initiatives have taken steps to support the engagement of civil society. While some of these initiatives focus specifically on enhancing the meaningfulness of civil society engagement in governance, most focus more broadly on facilitating greater civil society engagement in the respective work of these global initiatives. A recent review by the OECD, for example, found that development agencies are more likely to support civil society for project implementation than for joint planning, agenda-setting and decision-making.-UNAIDS funds a Communications and Consultation Facility to support NGO engagement in governance processes. This facility facilitates and coordinates communications within the NGO board delegation and between the NGO delegations and broader civil society. The Global Network of People Living with HIV (GNP+) currently oversees this mechanism for UNAIDS. A donor-funded effort supports a constituency bureau, based in Addis Ababa, to support the engagement of African board representatives on the governing boards of the Global Fund, and discussions are underway to leverage the bureau to support Africa civil society representatives on the boards of other global health initiatives.-For the Global Fund, formulation of national funding proposals for HIV, TB, malaria and health systems strengthening occurs within Country Coordinating Mechanisms (CCMs). The Global Fund mandates that CCMs set aside 15% of their administrative funding for non-governmental constituency engagement, with a particular focus on civil society and key and vulnerable populations.-Other support mechanisms created by global health initiatives focus primarily on engaging civil society in advocacy and program implementation, typically at country level. To improve civil society engagement in its work, GFF approved a civil society engagement framework for 2021-2025, with a specific focus on enhancing country-level engagement. GFF has committed $5 million over two years to implement the framework, which includes steps for communications, information sharing and engagement in strategic planning as well as creation of a civil society host to enable and support greater civil society engagement.-Gavi has earmarked 10% of funding from three Gavi funding windows to support civil society engagement in reaching communities currently missed by immunization programs. In April 2022, Gavi announced that Amref Health Africa would serve as the host of the Gavi CSO Constituency, responsible for mobilizing and supporting the efforts of more than 4000 civil society organizations to deliver immunization to underserved communities.

Since 2009, GPE has provided dedicated funding to civil society organizations through its Civil Society Education Fund. This mechanism aims to support civil society groups in influencing education policies, monitoring programs, and holding governments accountable for their commitments to ensure children’s access to quality education.

In addition to program implementation funding for civil society, some global health initiatives provide financing for civil society monitoring. For example, the Global Fund provides funding for community-based efforts to gather quantitative and qualitative data on the programs it funds and is working to stimulate inclusion of community-led monitoring in national funding proposals.

Implications

Our review highlights the spectrum of ways multilateral global health and related initiatives have incorporated civil society into their governance, operations, and other activities. The findings highlighted here may have relevance for the new global funding mechanism for pandemic preparedness and response – the FIF housed at the World Bank – that is being actively considered and whose governance structure is not yet decided. Several groups have already highlighted the importance of including civil society in pandemic preparedness, and the FIF specifically. For example, the Global Fund’s new strategic plan for 2023-2028 commits the organization to “champion community and civil society leadership in pandemic preparedness response, decision-making and oversight.” Advocacy and expert panel groups have provided feedback on the World Bank’s FIF white paper, as requested by the World Bank, calling for civil society to be “integral elements of the design” and expressing concern that the current approach “relegates civil society to an observer status…a far cry from the focused but inclusive multisectoral governance model.”

Our review identifies a clear trend in global health toward greater, more inclusive engagement of civil society in both governance and implementation, especially with respect to the meaningful involvement of civil society from the global South and affected constituencies. The ability of civil society to engage with and influence the programs and policies of multilateral global health initiatives appears most effective when the rules for inclusion of civil society constituencies are formalized and there exists a measure of institutional support to ensure the meaningfulness of civil society engagement. This is particularly the case when civil society has formal representation on governing boards as in the case of six of the 14 institutions analyzed here. While presence on governing bodies and committees is often important, it may not be sufficient in and of itself to create meaningful input and engagement with civil society. The details regarding how constituency-based representation is structured and how specific constituencies are identified and chosen, in addition to the availability of support mechanisms for civil society participation, often shape the meaningfulness of civil society involvement.

Many of our informants said civil society has important perspectives and insights that can strengthen efforts to address pandemic preparedness and response and other aspects of health system resilience. In particular, given the importance of building and maintaining trust in communities prior to and during pandemic response, civil society engagement may be a significant factor in the ultimate success of these efforts.  Regarding a new FIF for PPR, many stakeholders have argued that inclusive governance should be emphasized for these reasons and to address existing power imbalances found in a more traditional donor-beneficiary framework.⁶  At the same time, as referenced in the World Bank’s white paper, some believe that a more inclusive governance structure could result in decision-making that is more complex and less efficient. It also requires existing decision-makers to relinquish some degree of power.

Taken together, these findings offer new insights into how civil society has been included in major multilateral health and related organizations that are in operation today and may inform ongoing global discussions about the creation of a new financing mechanism for PPR. As we find here, all 14 institutions examined include civil society in a range of ways, including several which mandate formal inclusion.

1. See, for example: Independent Panel for Pandemic Preparedness & Response, Comment on the World Bank’s White Paper on a Financial Intermediary Fund (FIF) for Pandemic Prevention Preparedness and Response, June 1, 2022, https://theindependentpanel.org/comment-on-the-world-banks-white-paper-on-a-financial-intermediary-fund-fif-for-pandemic-prevention-preparedness-and-response/; Friends of the Global Fight, Comments on World Bank White Paper on a proposed FIF for Pandemic Prevention, Preparedness and Response, June 2, 2022, https://www.theglobalfight.org/comments-on-world-bank-white-paper-on-a-proposed-fif-for-pandemic-prevention-preparedness-and-response/; WHO Council on the Economics of Health for All, A Proposed Financial Intermediary Fund (FIF) for Pandemic Prevention, Preparedness and Response Hosted by the World Bank – Elevating Ambitions Beyond Business as Usual, May 31, 2022, https://cdn.who.int/media/docs/default-source/council-on-the-economics-of-health-for-all/who-council-statement-31-may-2022.pdf?sfvrsn=97b00b6b_3&download=true; Pandemic Action Network, https://thedocs.worldbank.org/en/doc/b045141896aeb7483eabc2c7a8a33da0-0290032022/original/Pandemic-Action-Network-Review-and-Feedback.pdf; Global Preparedness Monitoring Board, https://thedocs.worldbank.org/en/doc/d441e976caa31d90cb06da27f2e03fc4-0290032022/original/WHO-Global-Preparedness-Board-Response.pdf; GFAN, May 31, 2022, https://thedocs.worldbank.org/en/doc/30d000fce96e1ca1cd18dc5c853436b6-0290032022/original/GFAN.pdf; Resolve to Save Lives, May 30, 2022, https://thedocs.worldbank.org/en/doc/cc924b3c66c0ab2b05a4c7e11bce8f37-0290032022/original/RESOLVE-TO-SAVE-LIVES.pdf. All comments are posted here: https://www.worldbank.org/en/projects-operations/products-and-services/brief/financial-intermediary-fund-for-pandemic-prevention-preparedness-and-response-engagement#comments. ↩︎
2. See: Loewenson R, Annotated Bibliography on Civil Society Influence on Global Health Policy, Geneva: World Health Organization and Training and Research Center, 2003, https://www.researchgate.net/profile/Rene-Loewenson/publication/237459829_Annotated_Bibliography_on_Civil_Society_And_Health_Civil_society_influence_on_global_health_policy/links/5423df3f0cf26120b7a6f22e/Annotated-Bibliography-on-Civil-Society-And-Health-Civil-society-influence-on-global-health-policy.pdf; Lee K, “Civil Society Organizations and the Functions of Global Health Governance: What Role within Intergovernmental Organizations?” Glob Health Gov, 2010,3(2), https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4888897/. ↩︎
3. See: Gomez EJ, “Civil society in Global Health Policymaking: A Critical Review,” Globalization and Health 2018,14(1), https://globalizationandhealth.biomedcentral.com/articles/10.1186/s12992-018-0393-2; Smith SL, “Factoring Civil Society Actors into Health Policy Processes in Low- and Middle-income countries: A Review of Research Articles,” 1007-16, Health Policy Plan 2019, 34(1); Haas PM, Is There a Global Governance Deficit and What Should be Done About It? 2003, Berlin, Institute for International and European Environmental Policy. https://www.researchgate.net/publication/228423400_Is_there_a_global_governance_deficit_and_what_should_be_done_about_it. ↩︎
4. See: Loewenson R, Annotated Bibliography on Civil Society Influence on Global Health Policy, Geneva: World Health Organization and Training and Research Center, 2003, https://www.researchgate.net/profile/Rene-Loewenson/publication/237459829_Annotated_Bibliography_on_Civil_Society_And_Health_Civil_society_influence_on_global_health_policy/links/5423df3f0cf26120b7a6f22e/Annotated-Bibliography-on-Civil-Society-And-Health-Civil-society-influence-on-global-health-policy.pdf; Lee K, “Civil Society Organizations and the Functions of Global Health Governance: What Role within Intergovernmental Organizations?” Glob Health Gov, 2010,3(2), https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4888897/. ↩︎
5. The MDGs were eight global goals, including health-related goals, that were agreed to in 2000 by all the world’s countries, with a target date of 2015. They have been succeeded by the Sustainable Development Goals. See: https://www.un.org/millenniumgoals/. ↩︎
6. See: Mazzucato M, Donnelly A, “How to Design a Pandemic Preparedness and Response Fund,” Project Syndicate, April 20, 2022, https://www.project-syndicate.org/commentary/pandemic-financial-intermediary-fund-how-to-design-by-mariana-mazzucato-and-alan-donnelly-2022-04 (accessed June 15, 2022); Jarvis M, Glassman A, Kenny C, Governing New Pandemic Preparedness Financing – What’s Needed for Credibility, Legitimacy, and Effectiveness, Center for Global Development, September 21, 2021, https://www.cgdev.org/blog/governing-new-pandemic-preparedness-financing-whats-needed-credibility-legitimacy-and. ↩︎

The KFF Health Care Debt Survey is part of a broader investigative project on health care debt conducted by our colleagues at KHN in partnership with NPR. The survey was designed and analyzed by public opinion researchers at KFF in collaboration with KHN journalists and editors. This Report contains findings from the survey as well as the topline and methodology. The KFF Health Care Debt Survey provides a broad measure of health care debt, including medical and dental bills people are unable to pay as well as different forms of debt accruing from health care bills such as payment plans, credit cards, bank loans, and borrowing from family and friends. It also explores the effects of health care debt on individuals and the financial and personal sacrifices they make due to their debt.

Diagnosis: Debt is a multimedia investigative journalism series by KHN and NPR that explores the scale, impact, and causes of health care debt in America. It represents a fusion of the investigative power of KHN and NPR, the public opinion survey expertise of the KFF polling team, and original data analysis.

Explore the project’s journalism:

Diagnosis Debt:100 Million People in America Are Saddled With Health Care Debt, published June 16, 2022.

Upended: How Medical Debt Changed Their Lives, published June 16, 2022.

NPR Morning Edition: Sick and struggling to pay, 100 million people in the U.S. live with medical debt, aired June 16, 2022.

Medical Bills Can Shatter Lives. North Carolina May Act to ‘De-Weaponize’ That Debt, published June 21, 2022.

In America, Cancer Patients Endure Debt on Top of Disease, published July 9, 2022.

Nursing Homes Are Suing the Friends and Family of Residents to Collect Debts, published July 28, 2022.

Few Places Have More Medical Debt Than Dallas-Fort Worth, but Hospitals There Are Thriving, published Sept. 28, 2022.

Introduction

This is a companion report by the KFF polling group for an investigative project on health care debt conducted by our colleagues at KHN in partnership with NPR. The KFF Health Care Debt Survey was designed and analyzed by public opinion researchers at KFF in collaboration with KHN journalists and editors. The survey provides a broad measure of health care debt in the U.S. and explores the effects of health care debt on individuals and the financial and personal sacrifices they make due to their debt.

Rising health care costs have been a dominant concern in the U.S. for both individuals and for the nation as a whole for many years. For individuals, these rising – and sometimes unexpected – health care costs can often lead to debt. Discussions about the problem of health care-related debt in the United States have typically focused more narrowly on medical bills that people are unable to pay or those that have been sent to collections. However, the problem of health care debt is ultimately much larger when looking at different types of debt that are caused at least partially by medical or dental bills. Indeed, often individuals use other forms of borrowing or debt, such as payment plans, credit cards, bank loans, and borrowing from family and friends to pay their medical and dental bills. These forms of debt are sometimes not included in estimates of medical debt from other surveys and administrative data.

To fill this gap, KFF conducted an in-depth, nationally representative survey with 2,375 adults, including interviews with 1,292 adults with current health care debt. The survey defined health care debt as any money respondents currently owe or debt they have due to medical or dental bills for their own or someone else’s medical or dental care, including any bills that are past due or that they are unable to pay, any bills they are paying off over time directly to a provider, any debt they owe to a bank, collection agency, or other lender that includes debt or loans used to pay medical or dental bills, any bills they have put on a credit card and are paying off over time and any debt owed to a family member or friend for money they borrowed to pay medical or dental bills.

Executive Summary

Debt due to medical and dental bills is a widespread issue in the United States, affecting both uninsured and insured adults. Health care related debt encompasses more than just unpaid or past due bills from providers. Substantial shares of adults carry debt from medical and dental bills that they have paid off by taking on other forms of debt, including credit cards, personal bank loans, or loans from family and friends. The KFF Health Care Debt Survey finds that four in ten adults have some form of health care debt. Yet the likelihood of having health care debt is not evenly distributed. Uninsured adults, women, Black and Hispanic adults, parents, and those with lower incomes are especially likely to say they have health care-related debt.

Unexpected bills can be a major contributor to health care debt. Most adults with health care debt say the bills that led to their debt were from a one-time or short-term medical expense, which are often unexpected. Indeed, about half of adults – including three in ten of those who do not currently have health care debt – are vulnerable to falling into debt, saying they would be unable to pay a $500 unexpected medical bill without borrowing money. While about a third of adults with health care debt owe less than $1,000, even small amounts of debt can have significant financial consequences for some. Though a third of those with current debt expect to pay it off within a year and about a quarter expect to pay it within one to two years, nearly one in five adults with health care debt think they will never be able to pay it off.

In their efforts to service or pay off their debt, adults with health care debt report making a number of sacrifices and enduring substantial financial consequences. Most report cutting back on household spending, and more than four in ten say they or a household member have used up all or most of their savings due to their health care debt. Many also report more serious consequences like skipping payment on other bills, delaying college or buying a home, or changing their housing situation as a result of their debt. In addition, about half of adults with health care debt say they have made what they feel to be a difficult sacrifice in order to pay down their debt. These sacrifices have left some individuals feeling as if they could not provide a good life for their families, or with a general sense that they will never be able to extricate themselves from debt. Other reported consequences of debt, such as being contacted by debt collectors and having their credit scores negatively affected, can lead to additional financial problems such as difficulty buying vehicles needed for work or buying or renting a home.

Health care debt can also affect the ability of individuals to access needed medical or dental care. One in seven adults with health care debt say they have been denied care by a provider due to unpaid bills. In addition, adults with health care debt are more than twice as likely as those without debt to say they or someone they live with have postponed or skipped getting needed health care because of the cost.

The unequal consequences of health care debt are evident in the survey results. Among those with debt due to medical or dental bills, those with lower incomes and people of color (particularly Black adults), are more likely than their counterparts to report experiences like being contacted by collection agencies due to health care debt, being denied subsequent care, and making difficult sacrifices like changing their housing situation to pay down their debt.

Who Has Health Care Debt Due To Medical And Dental Bills?

The KFF Health Care Debt Survey finds that 41% of adults currently have some debt caused by medical or dental bills. To develop this measure, we asked respondents to think about any money they currently owe or debt they have due to medical or dental bills for their own medical or dental care or someone else’s care, such as a child, spouse, or parent. We then asked whether they currently have five different types of debt due to medical or dental bills: any bills that are past due or that they are unable to pay; any bills they are paying off over time directly to a provider; any debt they owe to a bank, collection agency, or other lender that includes debt or loans used to pay medical or dental bills; any bills they have put on a credit card and are paying off over time; or any debt owed to a family member or friend for money they borrowed to pay medical or dental bills.

More specifically, about a quarter of adults (24%) say they currently have medical or dental bills that are past due or that they are unable to pay, about one in five (21%) say they have bills they are paying off over time directly to a provider, about one in six say they have debt they owe to a bank, collection agency, or other lender that for loans used to pay medical or dental bills (17%) or say they have medical or dental bills they have put on a credit card and are paying off over time (17%), and one in ten (10%) say they have debt they owe to a family member or friend for money borrowed to pay medical or dental bills.

Beyond the 41% of adults who currently have some form of health care debt, a further 16% of adults say they have had debt due to medical or dental bills in the past five years that has since been paid off.¹  This means in total, most adults (57%) have experienced owing money due to medical or dental bills at some point in the past five years.

Adults with lower levels of education and income are more likely than those with higher education and higher income to say they have current health care debt due to medical or dental bills. Nearly half of without a college degree (47%) say they have health care debt compared to about three in ten college graduates (31%). While a majority (57%) of adults with household incomes under $40,000 say they currently have debt due to medical or dental bills, it is also notable that health care debt is not entirely uncommon among those with higher incomes (26% of those in households earning $90,000 or more). Among adults with health care debt, those with higher incomes are more likely to report debt due to medical bills in the form of credit card debt or bank loans, while those with lower incomes are more likely to report being indebted to friends or family.

There are also differences by gender, race, and ethnicity when it comes to current health care debt. Nearly half of women say they have debt due to medical or dental bills, compared to about a third of men (48% vs. 34%). Across race and ethnic groups, at least half of Black (56%) and Hispanic (50%) adults say they have debt due to medical or dental bills, compared to fewer White adults (37%). Unsurprisingly, among adults under 65, those who are currently uninsured are more likely to say they have health care debt than those who currently have health insurance (62% vs. 44%), though it’s notable that over four in ten adults with health insurance also report current debt.

By age, health care debt peaks among those between the ages of 30 and 49, with 52% in this age group saying they have current health care debt. This is likely related to the fact that about half of people in this age group are parents of children under 18, and parents are significantly more likely than non-parents to report having health care debt from their own or someone else’s medical or dental bills (58% vs. 35%). Over one in five adults ages 65 and over (22%) say they currently owe money due to medical or dental bills. Medicare provides near universal coverage to seniors, but it has gaps that can leave beneficiaries with substantial out-of-pocket costs.

Notably, across regions of the country, almost half of adults in the South say they have health care debt, compared to about a third of adults in the Northeast and in the Western U.S. who say the same. In addition, nearly half of adults (47%) in the twelve states that have not expanded their Medicaid program under the Affordable Care Act say they have current health care debt, compared to 39% in Medicaid expansion states.

Health care debt does not have to be enormous for people to have problems paying it off, though some do report owing large amounts. About half of adults with current health care debt (56%) say they owe less than $2,500, including 16% who say they owe less than $500 and 18% who owe between $500 and $1,000. Nearly half (44%) report owing at least $2,500 due to medical or dental bills, including about one in eight (12%) who say they owe $10,000 or more.

Most (59%) adults with current health care debt think they will be able to pay off their debt within two years, including a third who think they will pay it off within a year. However, nearly one in five (18%) say they don’t think they will ever pay it off. Notably, about one in four Black adults (24%), adults with household incomes under $40,000 (26%), and those who are uninsured (25%) say they don’t think they will ever pay off their health care debt.

Expectations of paying off health care debt also vary widely by the amount of debt. Among those who owe less than $1,000, nearly two-thirds (63%) say they expect to pay it off within one year. By contrast, about half (53%) of those who owe $10,000 or more say they’ll never be able to pay it off.

Causes Of Health Care Debt

Debt due to health care bills can be driven by one individual’s medical care, but often multiple family members’ bills can contribute to overall debt. While about half (54%) of adults with health care debt say the bills that led to their debt were only for their own care, 12% say their health care debt stemmed from bills for someone else’s care and another third (34%) say that bills for both their own and someone else’s care contributed to the debt.

Highlighting how one acute medical or dental incident can lead to persistent debt, seven in ten adults with health care debt (72%) say the bills that led to their debt were for a one-time or short-term medical expense, such as a single hospital visit or treatment for an accident. Many in this group (24%, or 30% of all adults with health care debt) say the incident that led to their debt occurred three or more years ago. About a quarter of adults (27%) say their medical debt built up over time, such as treatment for a chronic illness.

Common health care needs such as lab and diagnostic test and doctor’s visits are also common sources of health care debt. Among adults with health care debt, about six in ten (59%) say some of the bills that led to their debt were due to lab fees or diagnostic tests and over half (56%) say bills from doctor visits contributed to their debt. Half of adults with health care debt say bills from emergency care (50%) caused their debt, again highlighting how one-time acute medical events can cause people to fall into health care debt.

About half of adults with health care debt (49%) say dental bills caused some of their debt. Notably, dental insurance, which typically has annual limits on coverage, does not necessarily protect individuals from falling into debt due to dental bills. Among those who say dental bills contributed to their health care debt, 60% say they or the person whose bills led to their debt had dental coverage at the time.

The types of bills that lead to health care debt vary by age. Notably, one of the most common types of bills leading to health care debt for older adults is dental care, likely because traditional Medicare does not provide dental coverage (though some beneficiaries in private Medicare Advantage plans do have dental coverage, with the scope varying widely). By contrast, older adults are less likely than their younger counterparts to say their health care debt resulted from lab fees, doctor visits, or emergency care.

Other types of bills are more common sources of health care debt among younger adults. A majority of adults with health care debt under age 50 say their debt was at least partially due to bills for emergency care, compared to about four in ten (41%) of those ages 50-64 and about three in ten (31%) of those ages 65 and over. Adults under age 30 are also more likely than their older counterparts to report their health care debt is due at least partially to bills for mental health services (31%).

For young families, pregnancy and childbirth can lead to health care debt. Among adults under age 30 who have health care debt, 22% say that bills from pregnancy and childbirth contributed to their debt, rising to 29% of women in this age range.

Lacking money to pay a bill is often a reason people fall into debt, but complications in billing and insurance practices may also be contributing factors for some. Two-thirds (67%) of those with health care debt say that in the past five years, they have not paid or only partially paid a medical bill because they didn’t have enough money to pay it. But a roughly equal share (68%) say they have not paid a bill in full because they were expecting their health insurance to pay the bill. About four in ten (44%) adults with health care debt say that they did not pay a bill in full in the past five years because they weren’t sure the bill was accurate.

Unsurprisingly, lack of money to pay a bill is particularly an issue for those with lower household incomes. More than three in four adults with health care debt whose income is under $40,000 (77%) say they have failed to pay a medical bill for because they did not have enough money, compared to fewer than half of those with incomes of $90,000 or more. Yet issues with insurance occur across income levels as majorities with health care debt across income groups say they have not paid a medical or dental bill that was sent to them because they expected their health insurance to pay.

The Consequences Of Health Care Debt

Debt due to medical and dental bills can have broad consequences for individuals and families. When asked about some specific problems they or someone in their household may have experienced in the past five years as a result of their health care debt, six in ten adults with health care debt say they cut back spending on food, clothing, and basic household items (63%). Nearly half say they used all or most of their savings (48%) and about four in ten say they increased their credit card debt for other purchases (41%), took on an extra job or worked more hours (40%), and skipped or delayed paying other bills or debt (37%) due to their health care debt. Fewer, but substantial shares, say they have taken money out of long-term savings accounts (29%), delayed buying a home or delayed education for themselves or their child (28%), taken out other loans (26%), sought aid from a charity (24%) or changed their living situation, such as living with family or friends because of their health care debt (19%).

Among adults with health care debt, majorities across race and ethnic groups and at least half across income groups say they have cut back on household spending due to their medical debt. However, lower-income adults are more likely than those with higher incomes to say they have experienced certain negative consequences due to their debt. For example, over half (55%) of those with health care debt whose household income is less than $40,000 say they used up all or most of their savings due to their debt, which may put them in a further precarious financial position if they encounter future medical or other expenses. Compared to those with higher incomes, larger shares of lower-income adults with debt say they have skipped or delayed paying other bills (43%) or sought aid from charity or non-profit organization (32%). Notably, about a quarter of lower-income adults (26%), Black adults (24%), Hispanic (25%) adults with health care debt say they had to change their housing situation, such as moving in with family or friends, as a result of their debt.

Sacrifices Made Due To Health Care Debt

In addition to the specific consequences discussed above, over half (54%) of adults with debt due to health care bills say they have had to make what they feel is a difficult sacrifice to pay down their debt, Including at least six in ten of those in households with incomes under $40,000 (60%), Hispanic adults (64%) and those with current debt who were uninsured at the time the debt was incurred (66%).

Not surprisingly, those with greater amounts of debt are more likely to report having to make sacrifices, with three in four of those with debts of $10,000 or more reporting making a difficult sacrifice. A significant share of adults with smaller debts, however, also say they’ve had to make sacrifices (44% of those with debts under $2,500).

The sacrifices adults with health care debt say they have had to make due to their debt are wide-ranging. When adults with health care debt were asked to describe in their own words the most difficult sacrifices they have made, the most commonly cited sacrifices include cutting back spending on food or eating less (14%), followed by cutting back on discretionary spending on things such as vacations and entertainment (8%), changing their housing or living situation (7%), and increasing work hours (7%). Other sacrifices mentioned include skipping or missing payments on other bills (6%), cutting back spending in general (5%), skipping medical or dental care (5%), taking money out of savings (5%), and delaying or not buying a vehicle or selling their vehicle (5%). Many of the sacrifices cited by adults with health care debt have their own consequences that can further negatively affect their financial and emotional wellbeing. Below, in their own words, are some examples of the difficult sacrifices that adults with health care debt say they have made to pay down their debt.

Financial And Housing Consequences

Health care debt can have significant financial consequences, including having bills going to collections, lowering credit scores, and for some can contribute to bankruptcy, home foreclosures or evictions. Nearly half of adults with health care debt say they or a member of their household has been contacted by a collection agency in the past five years because of medical or dental bills. In addition, a third of those with health care debt (35%) say it has negatively affected their credit score. Fewer say they have experienced more serious financial consequences in the past five years such as being sued by a provider (6%), declaring personal bankruptcy (3%), or losing their home due to foreclosure or eviction (3%).

Collections Agencies

Collection agencies are third-party, private companies contracted by lenders and creditors to recover funds that are past due. The Fair Debt Collection Practices Act (FDCPA) federally regulates debt collector’s malpractices to protect consumers from abusive, unfair, or deceptive practices. However, often those with debt can feel harassed and intimidated by collectors.

While half (47%) of adults with debt due to medical or dental bills say that they or someone in their household has been contacted by a collection agency because of these bills in the past five years, these shares are higher among Black adults (66%), those with lower incomes (55% of those with incomes under $40,000), and women (52%).

Credit Scores

Credit scores in the U.S. are important in determining financing for large purchases such as vehicles, for buying or renting a home, and for rates on future debts such as credit cards. Having a low credit score can be difficult to recover from and cause adults to go into further debt. Credit scores are determined by a number of factors, such as length of credit, unpaid balances, and missed or late payments. For many adults, it can be difficult to understand what factors are influencing the score. Recently, the three major credit bureaus in the U.S. announced that they would “no longer include medical collection debt under at least $500 on credit reports”, a move they estimate will remove nearly 70% of medical collection debt from credit reports.

The KFF Health Care Debt survey finds that more than a third (35%) of adults with health care debt say this debt has negatively impacted their credit score, yet a similar share (39%) say they are unsure if their debt has impacted their credit score. Credit score decreases are more commonly reported by Black adults with debt, as nearly half (46%) say their credit score has been negatively impacted by the health care debt they carry, compared to a third of White (32%) and Hispanic (33%) adults who say the same. Nearly four in ten (38%) adults with health care debt in households with lower incomes say their credit score has been negatively impacted by their debt, compared to one in four (24%) of those with debt in higher earning households.

The negative effect of health care debt on credit scores is noted by some adults with debt when asked to describe the sacrifices they’ve made. Some describe how poor credit scores have led to more severe financial consequences such as losing access to vehicles needed for work and to stable housing options.

Consequences For Getting And Receiving Health Care

The consequences of health care debt are not limited to finances. For many, taking on health care debt can affect their ability to get future health care services or continue ongoing treatment. Fifteen percent of adults who currently have health care debt say they have been denied care by a hospital or other medical or dental provider because of their debt. Larger shares of Black adults with health care debt (22%) report this happening to them than their White (14%) or Hispanic (14%) counterparts. One in five (19%) adults with debt in households making less than $40,000 report being turned away from a medical provider, compared to 13% of those with higher household incomes.

KFF polling has found that health care costs are a top concern for U.S. adults, and many—even those without debt—make decisions about whether to seek care based on how much it costs and whether they can afford it. This survey finds that those with health care debt are more likely to report delaying or skipping medical care due to costs, though significant shares of those without medical debt also say they or someone in their household has done these things as well. Adults with health care debt are more than twice as likely as those without debt to say they or someone in their family has put off health care they needed due to costs in the past 12 months (64% vs. 28%). Similarly, six in ten (62%) adults with health care debt, compared to about one-third (35%) of those without, say they have relied on home remedies or over-the-counter drugs in the last year instead of going to see a doctor due to costs. Adults with health care debt are also at least twice as likely as those without to say that in the past 12 months, because of the cost, they have skipped a medical test or treatment recommended by a doctor (51% vs. 21%), not filled a prescription, cut pills in half, or skipped doses of a medicine (39% vs. 12%), purchased or tried to purchase medications from outside the U.S. (14% vs. 7%), or obtained leftover medications that were prescribed to another person (12% vs. 5%).

Overall, about eight in ten (79%) of those with health care debt report taking at least one of these actions in the past 12 months because of the cost, compared to about half (49%) of those without health care debt.

When asked to describe the sacrifices they’ve made to pay down debt, many mention their reluctance to seek future medical or dental care for fear of incurring even greater bills.

A Precarious Position: Vulnerability To Health Care Debt

In addition to the four in ten adults who say they currently owe money due to medical or dental bills, many more may be one large bill away from landing themselves in this position. A KFF analysis has found that even among those with health insurance, many do not have the savings to pay typical health plan deductibles.

Among those with current health care debt, it is not surprising that the large majority say that if they got an unexpected medical bill for $500, they would either have to incur further debt to pay it (45%) or would not be able to pay the bill at all (30%). However, even among those who do not currently have health care debt, about three in ten say they would have to borrow money in order to pay such a bill (20%) or would not be able to pay it at all (10%).

Public’s Views Of Policy Interventions To Address Or Assist Those With Health Care Debt

Given the relatively widespread nature of health care debt and the sizeable share of adults who would have to turn to debt to pay for a $500 unexpected medical bill, policies aimed at limiting costs for patients could potentially help individuals avoid health care debt. Majorities of both those who have and haven’t experienced health care debt say they support the government setting limits on how much patients with health insurance can be asked to pay out of pocket for medical care. While government regulation of health care is generally less popular among Republicans, majorities across partisans support such a proposal (though the share supporting among Democrats is 16 percentage points higher than among Republicans). Notably those who are insured and under age 65 (72%) are more likely to support this policy proposal than those who are uninsured (51%), likely because it would directly impact them.

It is worth noting that while overall support for this policy is high, the question on this survey did not ask individuals to consider any potential trade-offs related to the policy, such as higher health plan premiums or increased financial pressure of health care providers.

Consumer assistance programs have been established in many states to help individuals resolve issues with insurance providers and disputed medical bills, though no federal funding has been appropriated for these programs since 2010. With two-thirds of adults with health care debt reporting they have not paid a bill because they were expecting their insurance to pay it, it follows that many would welcome assistance in navigating disputes with insurance providers. Indeed, seven in ten adults with health care debt say they think a state consumer assistance program would be helpful to them personally. Black (76%) and Hispanic (80%) adults with debt are particularly likely to think these programs would be helpful to them compared to slightly fewer White adults (66%) who say the same. Moreover, majorities of adults with health care debt across income groups think consumer assistance programs would be helpful to them personally.

Appendix

Below are studies and analyses with measures and estimates of medical debt from recent years, including some which utilize a more narrow definition of medical debt.

This KFF Health Care Debt Survey was designed and analyzed by public opinion researchers at the Kaiser Family Foundation (KFF) in collaboration with KHN journalists and editors. The survey was conducted February 25 through March 20, 2022 online and via telephone, in English and Spanish, among a nationally representative sample of 2,375 U.S. adults. The sample includes 1,674 adults with current or past health care debt and 698 adults who have not had health care debt in the past five years. The majority of respondents (n=2,146) were reached online through the SSRS Opinion Panel. The SSRS Opinion Panel is a nationally representative probability-based web panel recruited randomly in one of two ways: (a) Through invitations mailed to respondents randomly sampled from an Address-Based Sample (ABS). ABS respondents are randomly sampled through the U.S. Postal Service’s Computerized Delivery Sequence (CDS). (b) from a dual-frame random digit dial (RDD) sample, through the SSRS Omnibus survey platform. To ensure representation of respondents less likely to be reached online, 177 interviews were conducted from a random digit dial telephone sample of prepaid cell phone numbers. Both the RDD sample for the SSRS Omnibus and the prepaid cell phone numbers were obtained through Marketing System Groups (MSG).

The survey was designed to reach adults who currently have health care debt or have had health care debt in the last five years. In order to do this, the probability panel sample included an oversample of panel members with annual household incomes less than $30,000, individuals with current or past health care debt (n=641) were included in the sample. In addition, 52 adults with past or current health care debt were reached by calling back respondents that had previously completed an interview on the SSRS Omnibus poll (and other RDD polls) and reported an annual household income of less than $25,000.

The combined online and telephone samples, excluding oversamples, were weighted to match the sample’s demographics to the U.S. population using data from the Census Bureau’s 2021 Current Population Survey (CPS). On the basis of this weighted sample, parameters for the debt and no-debt populations were extracted. Weighting parameters for each group included sex, age, education, race/ethnicity, region, education, and income, as well as patterns of civic engagement from the September 2017 Volunteering and Civic Life Supplement data from the CPS. The sample was also weighted to match population density parameters from the Census Planning Database 2020. The weights take into account differences in the probability of selection for each sample type. This includes adjustment for the sample design and geographic stratification of the cell phone sample, within household probability of selection, and the design of the panel-recruitment procedure.

The margin of sampling error including the design effect for the full sample is plus or minus 3 percentage points. Numbers of respondents and margins of sampling error for key subgroups are shown in the table below. For results based on other subgroups, the margin of sampling error may be higher. Sample sizes and margins of sampling error for other subgroups are available by request. Sampling error is only one of many potential sources of error and there may be other unmeasured error in this or any other public opinion poll. Kaiser Family Foundation public opinion and survey research is a charter member of the Transparency Initiative of the American Association for Public Opinion Research.

1. Since adults with health care debt may carry that debt burden over a number of years, the survey asked adults to recall any health care debt they may have had in the past five years. Recall of health care debt was limited to a five-year time horizon as it may be difficult for people to accurately remember specifics about the type and origin of any debts incurred prior. ↩︎