Early impacts of PEPFAR funding freeze on HIV service delivery in mid-Western Uganda

Abstract

Introduction

Although there is an emerging evidence base on the impact of planned donor transitions from HIV programs, there is little research exploring the effects of abrupt cessation of donor aid for HIV programs. We sought to examine the early impacts of PEPFAR funding freeze announced on 20th January 2025 on HIV service delivery in Mid-western Uganda.

Methods

We conducted a qualitative study in the Fort Portal region of mid-Western Uganda, involving 84 participants. In-depth interviews were conducted with 36 health workers in eight purposively selected HIV clinics. Six focus group discussions with a total of 48 participants were conducted with people with HIV (PWH). Data were analyzed by thematic approach.

Results

Four broad themes emerged in our analysis (1) There was uncertainty and confusion across the HIV service delivery landscape right from national-level HIV sector oversight to frontline service delivery. (2) PWH started ‘buffer stocking’ of antiretrovirals which contributed to stock-outs at participating facilities. (3) There was discontinuation of multiple HIV services. The discontinued HIV services include HIV prevention programs, viral load testing, services targeting ‘Key Populations’ and, community outreach for enhancing adherence to HIV/TB treatment including medication distribution through private retail pharmacies which ceased. (4) The loss of PEPFAR-salaried HIV workforce had ripple effects. These include disruptions in routine operations at HIV clinics, sub-national governance mechanisms for HIV services delivery unraveled and loss of PEPFAR-supported community health workers resulted in cessation of community outreach activities while loss of data clerks impeded routine HIV data capture.

Conclusion

The abrupt cessation of PEPFAR funding resulted in widespread disruptions to HIV service delivery including discontinuation of multiple HIV services at participating facilities. Our findings highlight the need for planned donor transitions and the need of strengthening the financial, technical, and management capacity of recipient governments for managing previously donor-funded HIV services. Further research on the medium- to long-term impacts of PEPFAR funding freeze is warranted.

Clinical trial number

Not applicable.

Supplementary Information

The online version contains supplementary material available at 10.1186/s12913-026-14165-2.

Background

In 2003, the United States President’s Emergency Plan for AIDS Relief (PEPFAR) was commissioned to support emergency national HIV responses in low- and middle-income countries (LMICs) with a high HIV burden but with narrow fiscal space for providing HIV care and treatment to all of their population in critical need [1].

Over the past two decades, PEPFAR invested over US$110 billion dollars towards expanding HIV services coverage including the procurement of antiretrovirals and rolling out HIV prevention interventions such as male medical circumcision. In addition, PEPFAR funded programs aimed at improving adherence to antiretroviral therapy (ART) and viral load suppression such as through community outreach programs in over 50 countries the majority of which are based in sub-Saharan Africa [2]. The PEPFAR program has been recognized as one of the most remarkable public health interventions [1]. PEPFAR has been credited with saving over 26 million lives with nearly 8 million babies saved from being born with HIV [5].

Given the emergency nature of the HIV epidemic in many intervention countries characterized by weak health systems, PEPFAR adopted a predominantly vertical approach, frequently channeling the support through parallel structures [3]. In PEPFAR focus countries, the HIV workforce was expanded, HIV-specific laboratory infrastructure strengthened, and on-site support supervision at HIV clinics was implemented [4]. In addition, PEPFAR supported the roll-out of less intensive HIV care models aimed at reducing burdens on patients and health systems known as ‘differentiated service delivery models’ (DSD). An example of DSD models are community-based drug distribution points [6].

Over the years, there have been multiple funding policy shifts in PEPFAR focus countries. One such shift was the ‘geographic prioritization’ policy that concentrated PEPFAR aid in sub-national units with higher HIV burden while scaling back support in lower-burden regions. Another funding policy shift involved routing PEPFAR aid away from international to locally-based non-governmental organizations [6]. The impacts of these policy shifts have been observed to affect the quality of HIV services in recipient countries. Although the effects of previous PEPFAR funding policy shifts such as ‘geographic prioritization’ were examined in studies [8, 9], the effects of abrupt funding freezes on HIV services have not been adequately understood. Assessing the impacts of sudden freezing of aid is critical in countries that rely heavily on donor-funding including Uganda that has a high HIV burden and relies on PEPFAR support for the 1.4 million people with HIV(PWH) currently accessing ART. It is estimated that PEPFAR spent $ 15 billion for supporting the national HIV response in Uganda in the first five years since the advent of PEPFAR in 2003 [6]. Hence, Uganda is particularly vulnerable to sudden funding cuts.

Although there have been rapid surveys of the impact of the sudden PEPFAR funding freeze announced on 20th January 2025 [7, 10, 11], there is little in-depth analysis of the early impacts on HIV service delivery at frontline HIV clinics in PEPFAR-supported countries. Many published articles on the impact of loss of PEPFAR aid have been commentaries and opinion articles reflecting on the potential impact on HIV epidemic control [12, 13]. There is inadequate understanding of the immediate effects of PEPFAR funding freeze on the primary beneficiaries of this aid as well as on the frontline HIV workforce in the countries that are heavily dependent on this external assistance [16]. In-depth analyses of the impact of sudden loss of foreign aid on HIV service delivery would benefit multiple constituencies including recipient governments in planning responses in the context of donor transition [14], civil society organizations in their advocacy campaigns for replacing donor investments, and vulnerable populations which suffer disproportionately from donor transitions [15].

Methods

Research design

We conducted an exploratory qualitative study involving in-depth interviews with health workers in HIV clinics across Uganda and focus groups with PWH to understand from their perspectives, the early impact of the sudden funding freeze on HIV services two weeks following the executive order issued by the new U.S. administration on 20th January 2025 which was followed by a ‘stop work order’ issued on 24th January 2025 in Uganda. Our study specifically focused on the 14 days following announcement of the sudden PEPFAR funding freeze announced on 20th January 2024.

Study sites and sample selection

The study was conducted at eight HIV clinics in Fort Portal sub-region in mid-western Uganda. Table 1 shows the selection of the eight HIV clinics that maximized representation by (a) level of service delivery in terms of tertiary level, secondary level and primary care level, (b) number of PWH attended to in the facility, and (c) ownership-type (private/ public). Fort Portal sub-region in mid-western Uganda was selected because it has the highest HIV prevalence rate at sub-national level in Uganda which is three times the national average [17].

Table 1.

Characteristics of participating health facilities

Study site	Ownership type	Level of service delivery	Number of PWH on ART
1.Fort Portal Regional Referral Hospital	Public	Tertiary	8159
2.Virika Hospital	Not for Profit	Secondary	3518
3.Kabarole Hospital	Not for Profit	Secondary	2610
4.Kyenjojo Hospital	Public	Secondary	3454
5.Kataraka Health IV	Public	Primary	2408
6.Kyegegwa Health IV	Public	Primary	2358
7.Bukuku Health Centre IV	Public	Primary	1441
8.Kaswa Health Centre III	Public	Primary	632
Total = 8 Facilities	Total = Six public and two private facilities	Total = One tertiary, three secondary and four primary- level facilities.

Data collection

In-depth interviews(IDIs)

We conducted 36 in-depth interviews with health workers (9 medical doctors, 13 clinical officers, 8 nurses, six community outreach workers) across the eight purposively selected health facilities. We purposively sampled different cadres of health workers to represent the diverse categories of the HIV workforce at the different levels of service delivery in Uganda as shown in Fig. 1. We elected to use in-depth interviews because they allowed us detailed exploration of individual perspectives of frontline health workers on the early effects of the PEPFAR funding freeze.

Fig. 1.

Levels of service delivery in the Ugandan health system

On the day of data collection which we scheduled on an HIV clinic day, we approached the HIV clinic in-charge at each study site and explained our study objective of exploring the early impacts of PEPFAR funding freeze. We sought interviewees with at least five years of work experience at each study site and could elicit comparative perspectives of HIV services before and after the PEPFAR funding freeze announced on 20th January 2025. Hence, the sampled health workers were purposively sampled with the help of HIV clinic in-charge at each of the eight study sites. We approached each nominated health worker in-person and invited them to participate in the study on a purely voluntary basis. Written informed consent was secured from each health worker before an in-depth interview was conducted.

We used a pre-tested interview guide with open-ended questions and flexible probes aimed at exploring the early impact of PEPFAR funding freeze from the perspective of participants. The interviews were led by the first author who has extensive experience in qualitative studies examining the impact of donor transition on HIV programs [18, 19]. On average the interviews lasted between 40 and 60 min. The face-to-face interviews were conducted in the offices of study participants at participating sites. The interviews were conducted in the English language. The interviews were audio-recorded with the consent of study participants. Data were collected between March and April 2025.

We maintained a constant awareness of our positionality as researchers, some of whom have been engaged in research on donor transition in HIV programs for almost a decade. Hence we engaged in regular reflexivity reflections to ensure that our personal prejudices and backgrounds did not bias the analysis and overall synthesis. In terms of gender we had a fair balance of both male and female perspectives given that three of the authors on the team were female. In terms of seniority in the author team, the last author is a senior researcher while two authors are mid-career researchers while the rest are early-career researchers. In terms of nationality, the majority of the authors are based in Uganda while two are Kenyan nationals. The two Kenyan authors helped offer an ‘outsider’ perspective and as such helped the team maintain a fair balance in interpreting study findings such as the health system impacts of PEPFAR funding freeze.

Focus group discussion (FGDs)

We aimed to explore the collective experiences of PWH on the early effects of PEPFAR funding freeze as a group and not as individuals and elected to utilize focus groups which are suited to capturing broad consensus. On a scheduled HIV clinic day when PWH come to pick up their medication refills, we informed gathered PWH about the objectives of our study and invited them to participate in our study on a voluntary basis. We were granted permission by the HIV clinic in-charge at each site to address gathered PWH. We sought adult PWH who had been accessing ART at each of the study sites for at least five years and were able to offer retrospective perspectives on HIV services before and after PEPFAR funding freeze. We conducted a total of six focus groups with each comprising 12 participants. The FGDs were conducted on-site at participating facilities. The six FGDs were organized by gender (two male, two female) and by age ( three age ranges; of 25–34, 35–44 and that of 45–55). The focus groups were conducted in the Rutooro the local dialect spoken in Fort Portal region in mid-western Uganda. The first author was assisted by a two research assistants who took notes and operated the recorder. On average, each focus group discussion lasted 90 min.

Data analysis

Our qualitative data analysis approach followed more closely the procedures recommended by Miles and Hubermann [20]. More specifically, we adopted an inductive approach in generating descriptive, thematic codes [21]. Qualitative data were managed in ATLAS.ti software [22]. The audio recordings of interviews and focus groups were transcribed verbatim by a professional transcriber proficient in both English and Rutooro the local language spoken in the study area. Transcripts were translated from the Rutooro a local Ugandan language to English (where necessary). Discrepancies in translation were resolved by the second author (AA) who is a native speaker of the local language spoken in the study area. Interview and FGD transcripts and the notes captured during these proceedings were reviewed for content relating to the study objective of understanding the early impacts of the sudden freezing of PEPFAR aid on HIV services. An initial coding scheme was developed by two authors (HZ, AA) after multiple readings of the interview and focus group transcripts [20]. Thereafter a draft codebook was generated after close scrutiny of line-by-line analysis of the text in each transcript through a process of open coding [21]. Two authors (HZ, AA) then assigned codes to relevant segments of the text. Codes which were similar or closely-related were then aggregated to form themes in a process involving three authors (HZ, AA, EB) [20]. The final stage involved overall synthesis and interpretation of study findings involving five authors (HZ, AA, KC, FC, EB). Illustrative verbatim quotes have been selected as categorized under the four overarching themes (HZ, AA, KC, EB). Disagreements in the assignment of themes were resolved by consensus in a team-based process. The consolidated criteria for reporting qualitative research (COREQ) checklist was utilized in reporting of our findings [23].

Results

Characteristics of study participants

With respect to the gender of health workers who participated in the study, 53% (20/36) were male while 47% (16/36) were female. With regard to age, most of the health workers were in the age range of 41–45 while the overall mean work experience was 8 years (1–20).

More than half of the PWH who participated in our focus groups had been on ART for more than a decade. In terms of age, the majority of PWH were within the age range of 35–44. Almost two thirds of PWH who participated in our focus groups were married.

Table 2 below shows the demographic characteristics of PWH who participated in our focus groups.

Table 2.

Characteristics of PWH who participated in our focus groups

Gender
Male	24	50.00%
Female	24	50.00%
Age group
25–34	9	18.75%
35–44	21	43.75%
45–54	6	12.50%
55–64	12	25.00%
Marital status
Married	36	75.00%
Unmarried	12	25.00%
Duration on ART
3–5 years	3	6.25%
6–10 years	15	31.25%
11–15 years	27	56.25%
16–20 years	3	6.25%%

The results are presented according to the four emergent themes: (1) confusion and uncertainty among providers and PWH (2) Discontinuation of select HIV services (3) loss of PEPFAR-salaried HIV workforce (4) Widespread stock-outs of anti-retrovirals.

Confusion and uncertainty among providers and PWH

Participants described utter confusion and uncertainty that gripped the entire HIV services delivery ecosystem soon after the PEPFAR funding freeze was announced on 20th January 2025 which was followed with a ‘stop work order’ issued on 24th January 2024. Widespread disruptions in routine HIV services delivery were reported across all participating facilities. Five of the eight HIV clinics reported a slow-down in operations as health workers grappled with making sense of what the ‘stop worker’ order meant for the day-to-day running of HIV clinics. Health workers indicated that there was no concrete guidance from the facility leadership on how to proceed during the stop-work order. PEPFAR-salaried cadres at participating facilities reported they did not receive guidance on their employment status in the immediate aftermath of the sudden PEPFAR funding freeze. A health worker recounted the confusion that ensued at one of the participating facilities.

The entire system was in crisis. No one knew what to do. The Ministry of Health was tight-lipped, PEPFAR implementing organizations were themselves clueless, and the leadership of the hospital did not offer operational guidelines on how to mitigate the crisis. There was paralysis and gridlock in the entire system [HIV Clinic manager_06_male]

From the perspective of facility-level informants, the confusion appeared to extend to policy maker elite at the Ministry of Health headquarters which ordinarily provides policy guidance and oversight on HIV services delivery. The leadership at Ministry of Health headquarters appeared uncertain about what to communicate to frontline health workers. Participants indicated that within a week of the executive order, the head of the Ministry of Health issued a formal written circular instructing all HIV clinics to be immediately integrated into outpatient departments without providing operational guidance on how to implement this directive.

I think uncertainty was almost everywhere right from the top to the bottom. There was a lot of uncertainty. If the Permanent Secretary of the Ministry of Health can offer memos to health facilities through a press conference instructing that HIV clinics be dissolved and patients (PWH) should pick their medicines through OPD (outpatient department) you realize that there is a lot of uncertainty [HIV clinician_03_female]

Our focus groups with PWH revealed that several recipients of HIV care stopped coming to facilities for medication refills because they believed ‘Trump has suspended PEPFAR aid’. There was a strong sense among PWH that several of their peers deep in rural communities were affected by the information vacuum and that many stopped coming to facilities even for scheduled reviews. Both health workers and PWH described heightened anxiety as described below:

There was so much uncertainty everywhere and its worse when it came to the patients because the patients don’t access proper information. They rely on hear-say. At many health facilities some patients stopped coming to the health facility. Others would skip their appointments and come later. When you asked them they would say for us we thought that you stopped giving us medicine. And the clients were also so much worried, very much worried [HIV Clinic manager_02_male]

Clients (PWH) were stuck deep in rural villages. They resigned themselves to a fate where HIV clinics were supposedly ‘closed’ because of the loss of PEPFAR aid. Many clients just remained in their homes and stopped coming to HIV clinics [PWH_02_Male]

Widespread stock-outs of antiretrovirals due to ‘buffer stocking’ by PWH

There was panic buffer stocking of anti-retrovirals as several PWH sought to mitigate potential shortages in supplies given the uncertainty surrounding the resumption of PEPFAR funding. Our focus groups revealed that a number of PWH sought multiple ‘refills’ from various HIV clinics within the broader sub-region of Fort Portal including those they were not registered at in a bid to stock as much medication as they could. A health worker described how they received unregistered clients from other health facilities as well as a trend where even registered patients kept coming for more refills under various pretext.

They were coming saying they lost their medicines. They wanted extra refills. Others were coming with excuses of travel. So they wanted us to add them more supplies. Clearly they wanted to store. We were getting so many people coming in the name of ‘visitors’ or patients not on our books perhaps from other providers. You find someone who ordinarily gets refills from Fort Portal Regional hospital coming down to our lower primary care facility to get refills with the excuse of not being able to go them from a regional referral hospital. So what was happening is most of them wanted drugs to store because they were not sure of what was going to happen. [HIV clinician_04_female]

Health workers reported that the practice of ‘buffer stocking’ of antiretrovirals by PWH culminated in stock outs at several participating facilities.

Our participants revealed that the abrupt stop-work orders disrupted supply chains for anti-retrovirals at participating facilities. Most of the supplies for HIV commodities are transported by road from the Ugandan capital Kampala to various parts of the country including our study sites which are about six hours away by road. Given that PEPFAR was partly financing logistics management for HIV commodities, these supplies were said to be stuck in the Uganda’s capital Kampala without transporters to ferry them to routine points of care countrywide. These disruptions in supply lines resulted in a dramatic reduction in HIV commodities at participating facilities. Health workers reported that although they had been implementing multi-month dispensing to stable clients, stocks run out to a point where they were only able to provide PWH with a medication supply for only seven days.

I remember that time we even gave each patient seven tablets. I don’t know what happened but that was a delay in delivering medicines from Kampala. We had to run to lower (primary care) facilities to get some medicine [HIV clinician_07_female]

In some of the facilities we visited health workers attributed the stock outs to having in stock medication that was near expiry dates.

First of all, by coincidence the supplies we had at the time most of them were about to expire. Especially, TLD (Tenofovir, Lamivudine, and Dolutegravir) and Pre-exposure prophylaxis (PrEP). So most of them the expiry date was just weeks away, so by the time that order came out, we faced a challenge of stock outs [HIV clinic manager_02_male]

A number of HIV clinic managers expressed fear that although HIV commodities were still in stock, supplies would run out because they were still relying on stock ordered before the ‘stop-work order’ was issued.

Health workers reported that during PEPFAR support they hired supply chain experts at the sub-national level. The role of the supply chain experts was to ensure that there were sufficient supplies of HIV commodities at routine points of care such as redistributing commodities from facilities which had over supply to those without stock. These supply chain strategies for ensuring adequate stock of HIV commodities across sub-regions unraveled after the ‘stop work’ order was announced on 24th January 2025.

Discontinuation of multiple HIV services

Participants described a narrowing in the range of HIV services offered across all participating facilities.

HIV prevention interventions were particularly affected. Health workers across participating facilities indicated that they abruptly stopped providing pre-exposure prophylaxis (PrEP) as well as the provision of post-exposure prophylaxis (PEP) commodities. Condom distribution was halted with health workers reporting that ‘boxes of condoms’ were stuck at facilities without fuel for vehicle to distribute them.

Services targeting ‘Key Populations’(KP) discontinued

Services targeting ‘Key Populations’(KP) such as ‘drop in’ centres where KP such as female sex workers and men who have sex with men received specialized HIV services managed by PEPFAR-funded civil society organizations (CSOs) ceased. The KP-focused CSOs in this sub-region of Uganda all ceased operations at the four participating facilities that run them.

A participant reported that female sex workers routinely received PrEP at a drop-in centre owing to stigma and discrimination at mainstream health facilities she recounted how these drop-in centres closed soon after the freezing of PEPFAR funding.

Many sex workers were receiving PrEP regularly for the past two years at drop-in centres. Now when they go for refills they find a big padlock on the door. The drop-in centres stopped working and the staff are no longer coming in for work [PWH_09_female]

Viral load tests suspended

Health workers reported that viral load testing services were abruptly stopped across all participating facilities. Participants indicated that viral load tests which assessed how well the virus was being suppressed and monitored the effectiveness of ART were halted. HIV clinic managers indicated that viral load tests were mandatory for PWH and we meant to be conducted at least twice a year. Our interviewees indicated that health facilities depended on ‘laboratory hubs’ or better-equipped laboratories at higher-tier hospitals which served wide catchment zones for processing and analyzing blood samples to assess viral load. Participants revealed that prior to the foreign aid freeze, full-time PEPFAR-salaried motor cycle riders known as ‘hub riders’ transported specimen from lower-level facilities often in rural areas to these ‘lab hubs’ usually hosted at tertiary level of care or at general hospitals in urban centres. HIV clinic managers reported that with the loss of salary support to ‘hub riders’, collected blood samples were stuck at lower-level health facilities.

For the hub riders - we couldn’t see them picking samples from here. We could call them but they could tell us that for us we are not coming. Yet we had already bled the clients. So we just kept the samples, until when we reached a time when we just threw them away(samples) [HIV clinic manager_12_male]

Health workers reported that lots of blood samples could not be traced due to the disruptions in the transportation system of blood samples from lower-level facilities to regional or nationally-based HIV-specific reference laboratories.

Then for samples, we bled clients but we can’t tell what happened. We cannot track whether the samples were taken to UNHLS (national HIV laboratory) or not, because they might be lying somewhere. So we might have to bleed most of our clients again because when you check on the dash board and you don’t see anything [HIV clinic manager_10_female]

Health workers observed that the inability to conduct viral load tests would have ripple effects on the HIV care continuum. Health workers noted that interruptions in viral load testing hindered the tracking of suppression rates and limited the ability to monitor treatment success and impeded determination of the need for interventions such as intensive adherence counselling or switching to second-line or third-line treatment regimens.

A health worker made this observation to illustrate the consequences of not conducting viral load tests.

It all starts with viral load monitoring. It is the entire cascade. If there is no bleeding to get blood samples which inform the viral load results. And again when it comes to data one has to extract the data to show us which of our clients is failing then we extract and put on our dash board for closer monitoring. Without viral load testing, many children are going to be born HIV positive. When people have detectable viral loads that means that the possibility of transmission is high [HIV clinician_12_Male]

Cessation of community outreach

Community outreach activities were especially impacted by the PEPFAR funding freeze. Community outreach where health workers followed up patients in their homes and ensured they attended their clinic appointments ceased because many of these community workers depended on monetary allowances for field work from PEPFAR-funded projects at sub-national level.

Mobile brigades of ‘community linkage facilitators’ that traversed rural communities and promoted adherence to ART or to tracked down ‘loss-to-follow up’ cases ceased operations.

We no longer receive visits to our homes and communities from our hospital. They used to come frequently to our village to find those who were lost- to- follow up. They used to visit the homes of clients who used to default on their appointments. Our retention in care rates were very good but now nobody cares if you miss your scheduled appointments. Nobody cares if you don’t pick your refills [PWH_011_female]

HIV clinic managers reported that community outreaches were critical to tuberculosis (TB) control. They reported that these outreaches involved home visits for adherence counselling, sputum collection by community health workers, referral of patients to appropriate facilities, and stigma reduction through counselling and education. This TB control arm through community outreach ceased in participating facilities after the ‘stop work order’ was announced.

Community retail pharmacy distribution halted

Differentiated service delivery (DSD) models for HIV treatment such as community drug distribution points or CDDPs in rural out posts closed.

Health workers reported that the pharmacy-only refill innovation whereby stable clients would pick their medication refills from private pharmacies in one of the DSD models known as Community Retail Pharmacy Drug Distribution Point (CRPDDP) was discontinued. Participants in the regional referral hospital reported that 28 personnel supporting the private retail pharmacy refill mechanism had their contracts abruptly terminated.

A number of our staff on the CRPDDP program were laid off. So, actually right now we are very few on the ground. Bringing back these people to us will be very difficult [HIV clinician_12_Male]

Health workers reported that private retail pharmacies were paid on a regular basis with funding from PEPFAR through regionally-based implementing organizations such as Baylor Uganda in mid-western Uganda. Participants reported that with the stop-work orders, private retail pharmacies had accumulated huge arrears for their services.

We have a back log of some months of unpaid monies to private retail pharmacies for the services rendered in hosting the CRPDDP (refill distribution program). The CRPDDP program has been pending for many months. The pharmacy people have not been getting their money they told us ‘first take back your things (medication) as we think about it’. Clients who have been enjoying the convenience of accessing their refills in a nearby retail pharmacy, they are going to be affected. They will end up lining up in these long ques at the facility [HIV clinician_11_Male]

Health workers reported that PWH enrolled in the community pharmacy refills network were likely to disengage from care due to reluctance to queue at facilities after enjoying the convenience of getting their refills incognito from private retail pharmacies. They indicated that PWH enrolled in the CRPDDP model were those with individualized stigma and reverting to facility-based care would likely be a barrier to retention in care. A health worker reflected on the implications of halting the CRPDDP model below.

Remember most of these people on the retail pharmacy program are the ones with stigma issues. So we counselled them get their medication from retail pharmacies during night time. So they just go and pick their medicine. It has been very easy for them. But now coming back to the lines at the facility where everyone knows the agenda of what you have come for. So we are going to have many people whose treatment is interrupted. We shall have lots of defaulters, we shall a lot of advanced HIV disease cases because their adherence is going to be poor [HIV clinician_07_Male]

HIV workforce losses

Perhaps the most profound impact of the abrupt funding freeze on health systems were losses in the various cadres of the HIV workforce that were PEPFAR-salaried. Interviews revealed that the affected cadres of health workers were diverse. They ranged from officials at the Ministry of Health headquarters to sub-national level program managers to facility-level clinical personnel.

With respect to participating facilities, the frequently cited cadres of health workers lost include the expanded HIV workforce deployed across PEPFAR-supported sites. These cadres included data clerks, ‘counsellors’, and community health workers across case-study sites. Some facilities reported the loss of entire teams of data clerks with ripple effects on routine data capture on HIV indicators, ranging from HIV testing, HIV treatment, to viral load suppression.

And then data couldn’t be captured very well because most of data personnel like those who were supporting on the data team were no longer with us. And of course HMIS (information system) is very crucial in HIV management since most of the indicators are data driven and these are the custodians of HMIS yet they were withdrawn. And if you do a thorough assessment you will notice that government staff are not very conversant with entering data on HIV indicators because of this dependence on the withdrawn data clerks [HIV clinician_05_female]

Our focus groups with PWH cited the loss of ‘counsellors’ at HIV clinics as a major setback to retention in care goals. PWH in our focus group indicated that counsellors were said to be vital in providing adherence counselling for some select sub-groups such as adolescents who have relatively low ART adherence rates and frequently default on taking their medication. Participants reported that counsellors provided vital psycho-social support to PWH which enhanced retention in HIV care and overall attainment of viral load suppression goals.

There are no counsellors anymore at HIV clinics. There is only dispensing of medicines. There is no counseling support to clients to encourage them. PWH suffer depression and need constant encouragement to endure on this life-long treatment [PWH_07_female]

Not-for-profit hospitals in our sample of facilities were particularly affected by losses in HIV workforce. A faith-based general hospital reported that they lost nearly half of the full-time clinicians in their HIV clinic who drew salaries from a PEPFAR-funded implementing organization. The stop-work order had an immediate impact and resulted in disruptions in routine operations at HIV clinics as the non-PEPFAR clinician cadres were insufficient to meet the overwhelming demand for care and treatment.

The number of staff that are supported by Baylor Uganda were all put to hold. And of course the majority of them, actually, all of them were supporting the HIV clinic. So the clinic was lagging behind in the first two weeks. It did not only affect the workers but also the patients because services were disrupted during those two weeks [HIV clinic manager_07_male]

Although the majority of participating facilities reported losses in non-clinician cadres, not-for-profit facilities reported loss of core HIV clinicians who are essential personnel in HIV clinics. Health workers frequently mentioned that the PEPFAR-salaried HIV workforce were comparatively more motivated in their roles in HIV clinics when compared to Uganda government employees.

The first two weeks after the executive order was issued, it was a total mess. Particularly for human resources because our PEPFAR implementing organization supports case management officers, counselors, linkage referral assistants, data clerks and many others. Basically, we were doing badly. Remember, most of our government employees, they have a bad attitude towards working in the HIV clinic. They don’t want to work there. [PWH_01_female]

A related workforce impact of the stop work order was a reported overall decline in morale among the workforce that remained in HIV clinics after loss of PEPFAR-supported personnel.

The morale is low and our performance is low. We are being demotivated in our work because we are seeing our hard work over the past years come undone because of these cuts in funding [HIV clinician_05_female]

The majority of participating facilities reported a rapid expansion in workloads for the remaining HIV workforce made up of Uganda government employees after the PEPFAR-salaried workers received the stop work order.

And then another thing, the staff (PEPFAR-supported personnel) when they were stopped from working, we were overwhelmed with work [HIV clinician_03_Male]

Our in-depth interviews revealed that the stop-work order had an impact on governance mechanisms for HIV programming in the Fort Portal sub-region. It emerged that PEPFAR implementing organizations assigned technocratic teams at the sub-national level in Uganda to manage HIV epidemic control interventions based on annual programmatic targets. These PEPFAR-salaried program managers, with advanced degrees in public health, evaluated HIV sector performance periodically at the level of districts and managed multi-million dollar budgets for HIV programming at the sub-national level. These sub-national level governance arrangements unraveled in the two weeks following the executive order. Uganda government employees in HIV clinics noted that the dependence on PEPFAR-supported technocrats had revealed a deficit in HIV program management in the two weeks following the PEPFAR funding freeze.

I think that sustainability planning for a post-PEPFAR scenario was not effective. It appears that the ones that have the knowledge on planning and managing HIV interventions in the region are PEPFAR staff. We as government employees have been too comfortable relying on this PEPFAR staff. Now we see huge gaps in our capacities as a district [HIV clinician_09_Male]

Discussion

We set out to explore the early impacts of the sudden freezing of PEPFAR funding on HIV services in mid-western Uganda. We found that the abrupt ‘stop-work orders’ had profound impacts and culminated in a health system crisis characterized by uncertainty and confusion across the entire HIV services landscape right from national-level sectoral oversight to disruptions at the frontline of service delivery. Amidst the confusion, PWH started ‘buffer stocking’ of antiretrovirals which contributed to stock-outs. This was further exacerbated by severe disruptions to supply chains which were previously PEPFAR-funded. The ‘stop-work order’ resulted in a discontinuation of a number of HIV services offered during PEPFAR support. HIV prevention programs were halted, services targeting ‘Key Populations’ were discontinued, viral load testing was suspended while medication distribution through private retail pharmacies ceased. HIV workforce losses had ripple effects on sub-national governance mechanisms, reduced staffing led to disruptions in HIV clinics operations, loss of workforce monetary allowances led to cessation of community outreach, and loss of data clerks impeded routine data capture.

Although previous studies have documented planned donor transitions away from HIV programs [24–27] our study’s unique contribution in attempting to fill the void on impacts of abrupt discontinuation of international assistance for HIV programs in a low-income context is novel. Our study adds to evidence suggesting that donor transition often culminates in a narrowing of scope of HIV services as borne out by studies in India, Uganda, Kenya and South Africa [24–27] and further corroborated in a USAID multi-country analysis which found that recipient governments were unable to sustain the full range of HIV services in post-transition periods in countries experiencing donor transition in HIV programs in low and middle incomes countries [28].

Our study highlights the impacts of the abrupt funding freeze on HIV commodity supply chains in mid-Western Uganda. The reported stock outs of antiretrovirals were understandable given that Uganda implements ‘multi-month dispensing’ where PWH can be provided with a six-months’ supply of HIV medication. Hence, giving multiple PWH these supplies without forward planning can result in exhausting available stock at facilities if supply lines are not replenished on a predictable, regular basis.

Potential long-term impacts of PEPFAR funding cuts

Our study highlights the early impacts of the sudden freezing of U.S. global health assistance which potentially have cascading impacts on the continuum of HIV care in mid-Western Uganda. Participants alluded to the potential negative impacts of loss of investments in HIV programming on retention in care, potential drug resistance and overall population-level HIV epidemic control. A study in Uganda revealed that the impacts of loss of donor aid in HIV programs are often lagged and take time to manifest [6]. Although our study explores the early impacts of PEPFAR funding freeze, a study of two districts in Eastern Uganda which tracked the impact of loss of PEPFAR support after seven years found that long-term impacts included reversals in gains in HIV epidemic control at sub-national level. This study revealed that the loss of PEPFAR aid in Eastern Uganda culminated in a doubling of HIV prevalence in two districts, declines in viral suppression rates, and increased mortality among PWH [6]. We recommend further research on the medium to long-term impacts on cuts in donor funding on the attainment of UNAIDS’ 95-95-95 targets such as on retention in care. Our study adds to the accumulating evidence on the impact of loss of external aid on HIV services in low and middle-income countries [9, 29] and the need for systematic research on the impact of donor transitions on health as recommended by Schroff and colleagues [30].

Impact on health systems

Our study reveals profound impacts on health systems in our focus sub-region of mid-western Uganda. Perhaps the loss of cadres of the HIV workforce that were PEPFAR-supported was one of the salient impacts. The impacted cadres of the HIV workforce ranged from officials at Ministry of Health headquarters, sub-national level HIV program managers and facility-level personnel including core clinical staff. Participants identified the ripple effects of losses in HIV workforce on wide-ranging health systems sub-components [31] such as impacts on data capture of HIV indicators, sub-national level governance arrangements, and disruptions in routine service delivery. An earlier study in Uganda identified the losses in human resources following cuts in PEPFAR aid as the most compelling impact in ‘low burden’ districts in Northern and Eastern Uganda which were impacted by cuts in PEPFAR funding implemented between 2015 and 2017 [18]. Our study points to the need for further in-depth analysis of the medium to long-term impacts on health systems of PEPFAR aid cuts at national and sub-national levels [32]. In this study, participants described a ‘system in crisis’ following the abrupt freezing of PEPFAR support and future research should explore how the health system in Uganda adapted in the medium to long-term. There is a body of work on health system resilience in the face of internal and external ‘shocks’ in instances such as the Ebola outbreak in West Africa [33, 34] or more recently with respect to the impacts of Covid-19 ‘lock down’ preventive measures [35, 36]. Our study highlights the impacts of ‘external shocks’ in terms of the impact of sudden loss of external aid on health system functioning at sub-national level in Uganda [37, 38].

‘Responsible’ donor transitions

The sudden freezing of aid for HIV programs in Uganda and other PEPFAR-supported countries as opposed to a phased or planned transition brings to the fore the literature urging ‘responsible’ donor transitions [39]. There is accumulating evidence on recommended practices in donor transition in HIV programs and broadly on development assistance for health programs such as the donor transition management practices proposed by Bennett and colleagues [24] and by Burrows and colleagues [14] as well as recommendations by Vorgus and Graff [40]. The recommended practices include mutually agreed transition road maps, proactive communication and capacity development of recipient governments [14, 24]. Our study revealed that the loss of PEPFAR support led to an immediate halt in specialized services for ‘key populations’ such as for men who have sex with men who suffer provider stigma in mainstream HIV services. Rodriguez and colleagues have reflected on the impact of donor transitions on vulnerable populations that are disproportionately affected by donor transitions away from HIV programs and therefore the need for more ‘political commitment’ in donor transition with respect to these sub-groups [15].

Study limitations

Our study had some limitations. Our qualitative study involving eight facilities in one region of Uganda is not intended to be broadly transferable to all settings. Our aim was to understand the early impacts of PEPFAR funding freeze from the perspective of PWH and frontline health workers. We took a retrospective approach and asked participants to ‘look back’ at the two weeks following the freeze of PEPFAR funding declared on 20th January 2024. Recall bias was a potential limitation given this approach. The use of both IDIs and FGDs allowed for triangulation, and we believe the insights during the FGDs offered the opportunity for members in the group to remind each other of the past events. Our study has several strengths; it is one of the first in-depth accounts of the early impact of the freezing of PEPFAR funding in a low-income country that is heavily dependent on PEPFAR aid in its national HIV response. The combination of accounts from both a provider lens, and from the perspective of PWH provides a more comprehensive analysis than a singular dimension would have allowed.

Conclusion

The abrupt cessation of PEPFAR funding resulted in widespread disruptions to HIV service delivery including discontinuation of multiple HIV services at participating facilities. Our findings highlight the need for planned donor transitions and the need of strengthening financial, technical, and management capacity of recipient governments in managing previously donor-funded HIV services. Further research on the medium- to long-term impacts of PEPFAR funding freeze and aid cuts is warranted.

Supplementary Information

Below is the link to the electronic supplementary material.

Abbreviations

AIDS

Acquired Immune Deficiency Syndrome

ART

Anti-retroviral therapy

ARVs

Anti-retrovirals

MOH

Ministry of Health

PEPFAR

The Presidents’ Emergency Plan for AIDS Relief

PLHIV

People Living with HIV

SSA

Sub-Saharan Africa

WHO

World Health Organization

Author contributions

HZ conceptualized the study. HZ produced the initial manuscript draft. AA, JK, FC, VB, EB, HZ critically reviewed and revised the final version of the manuscript.

Funding

This study was funded under a postdoctoral research fellowship supported by the Welcome Trust (UK) and the FCDO (DELTAS Africa II) through the Consortium for Advanced Research Training in Africa (CARTA) http://www.cartafrica.org under grant agreement: 431.960/008.

Data availability

The datasets generated during and/or analyzed during the current study are not publicly available due to ethical reasons but are available from the corresponding author on reasonable request.

Declarations

Ethics approval and consent to participate

This research received ethical approval from The AIDS Support Organization (TASO) Uganda Research Ethics Committee under instrument: TASO-2024-385. TASO REC is accredited by the Uganda National Council of Science and Technology (UNCST). All participants signed a written consent form before participating in the study. Data were collected in accordance with international conventions and guidelines on research involving human subjects such as the declaration of Helsinki.

Consent for publication

Not applicable.

Competing interests

The authors declare no competing interests.