The Elton John AIDS Foundation has a long history as a grantmaking organization committed to ensuring access to HIV care and ending the AIDS epidemic globally. The following case study describes the Foundation’s exploration of the huge potential of outcomes-based financing for HIV. The team started this journey by seeking to deeply understand the experience of people living with HIV. They were then pushed into new territory by creating and tailoring an innovative program design to those needs, gaining external investment capital, developing iterative service interventions, and catalyzing national health policy change to sustain services in the long term. As the first social impact bond for HIV in the world, the successful model has substantial potential for learning and replication.
Unpacking the problem
The Foundation began this journey in 2015, more than three decades after the HIV pandemic emerged. The number of people living with HIV in the U.K. was regularly increasing, and it was not clear why existing services were not successful in curbing new infections. Fast and effective HIV tests were widely available. High-quality treatment was free to everyone in the country. HIV medications could stop the progression of the virus and even prevent HIV from being passed on. The Foundation knew that stigma and discrimination contributed to the spread of HIV globally, but they needed to understand the specific reasons for the spread in London.
The team started in the London borough of Lambeth, an area with HIV rates 10 times higher than the national average. They conducted immersive ethnographic research to understand the real experiences and challenges faced by individuals in this borough. They interviewed HIV researchers, public health teams, and implementation experts to get a sense for best practices. They visited local counseling centers and advocacy groups to hear from experienced community leaders. They even did journey walk-throughs, where the team experienced HIV testing in clinics or doctor’s offices firsthand. The most influential conversations were focus groups with Lambeth residents. This process provided the necessary data to understand why people were choosing to not test for HIV (Box 1).
Box 1. Barriers to HIV testing
– Busy lives: “I work all hours trying to support my family. I don’t think about my health.”
– Avoidance of health services: “My immigration status is uncertain. I try to keep my head down.”
– Discomfort with current testing options: “A GP [doctor] would judge me.”
– Lack of physical symptoms: “I feel fine. Why would I go to the doctor?”
– Social stigma: “I would never talk about HIV with a hairdresser—all my neighbors would know.”
– Anticipated rejection: “I would be an outcast if I was positive.”
– Self-stigma: “I’m not that kind of person.”
– Belief that HIV implies death: “It wipes out whole families. There is no cure. Why bother testing?”
Source: Direct interviews and focus groups with Lambeth residents.
Identifying a solution
The Foundation learned that practical barriers were limiting testing at clinics, and social barriers were limiting community testing. HIV experts interviewed suggested a solution that could bring testing to a new location: Test individuals for HIV when they come into the emergency room at hospitals. In many cases, blood was already being taken, so an HIV test could be added quickly and inexpensively. HIV testing in emergency departments (ED) was already a formal recommendation from National Institute of Health and Care Excellence (NICE) guidance, though not widely undertaken, and an external ED testing pilot in a nearby borough proved acceptable to patients and staff. It was time to bring ED HIV testing to South London.
The team jumped into action, calling on National Health Service (NHS) leaders and other government officials to expand ED testing. Public leaders were supportive, but in meeting after meeting, no one party had the money available to make it happen. It was clear that ED testing would pay for itself in the long run—with fewer individuals needing hospitalization for late-stage untreated AIDS and fewer individuals getting HIV in the first place—but these savings would take time to accrue. Plus, the savings wouldn’t all come back to one organization’s budget, but instead would be distributed across hospitals and clinics around the city. This created a challenge for public health leaders who managed fixed, limited budgets.
Developing proof in practice
Rather than trying to convince people to find budget that didn’t exist, the Foundation decided that they would fund the program independently to create a proof of concept. The team sought guidance from Social Finance, a leading impact finance nonprofit, on how they could use outcomes-based finance to create a short-term program with long-term impact. Together, they designed a Social Impact Bond (SIB), an outcomes-based payment mechanism that would allow investors to fund services in the short term, with the intention that government would cover costs in the long term if the program proved effective.
As a part of this SIB, the Foundation convened an enthusiastic group of private and nonprofit investors—ViiV Healthcare, Comic Relief, and The Big Issue Invest—to cover upfront costs through loan investment. They signed deals with public and quasi-public payers—Lambeth Council and The National Lottery Community Fund—to pay investors back as outcomes were achieved. They met with service providers who could start testing and linking individuals to care. The new partners had varied areas of expertise, but they shared the mission of bringing HIV care to individuals. The “Zero HIV” SIB was implemented from December 2018 to December 2021, and during that time, 12 organizations across EDs, primary care offices, clinics, and local communities provided new HIV testing and engagement services. Their testing and services showed immense success, acceptability to patients, and cost effectiveness. (Box 2)
Box 2. SIB achievements
– Brought >460 individuals into HIV care, including 209 newly diagnosed and 256 reengaged into care.
– Demonstrated that ED testing finds underserved populations, with SIB patients that included 54% Black, 35% women, and 10% aged 65+ (compared to 2020 national averages 24%, 29%, and 4%, respectively).
– Demonstrated that the individuals reached needed immediate help, with 75% presenting with late diagnosis (compared to the 2020 national rate of 42%).
– Provided cost-effectiveness, with “net healthcare costs avoided” of >£90 million over the lifetimes of individuals brought into care and further transmissions avoided.
– “The project was really helpful for me, as it did make me aware I was HIV positive. Without it, I would never have known.” – Person diagnosed and brought into care
– “Push the testing. … Tell them my story, encouragement will save lives and unnecessary suffering.” – Person diagnosed and brought into care
– “The ripple effect of the SIB has started to challenge HIV-associated stigma amongst staff and patients.” – Clinical nurse specialist
Sources: Zero HIV Social Impact Bond internal data. Independent cost-avoided analysis. National HIV data. Patient and provider testimonials.
Changing national health policy
As the SIB progressed, the project partners increasingly codified and shared emerging positive results. The Foundation collaborated with National AIDS Trust and Terrence Higgins Trust to launch an independent HIV Commission, which developed a comprehensive report on recommendations to end HIV in England by 2030. SIB results were highlighted in the report’s launch, and as the government began to incorporate the report into its own plans, it continued to draw on the SIB’s learnings.
The SIB allowed the Foundation to make the case for ED HIV testing with concrete evidence of its success and cost-effectiveness. On December 1, 2021—one month before the SIB concluded—the government allocated 20 million pounds sterling to roll out ED testing nationally in all highest prevalence local areas. Scaling this approach will result in essential testing of individuals in need across the country, especially those who would have been hesitant to test in sexual health clinics or doctor’s offices. Though the SIB ended, the NHS’s national rollout will pick up where it left off and expand the great work.
Expanding the model
ED testing proved to be an extremely effective intervention to reach people who would not otherwise have received HIV testing or care. However, knowledge of the intervention alone was not enough to make long-term change. This SIB allowed the program to leverage independent investor funding, provide innovative health services, build a strong case with clear evidence, and deeply engage public and private stakeholders throughout the process. This laid the ideal groundwork for an eventual transition of service provision from SIB pilot to government implementation.
The learnings from this SIB could be extended to other pay-for-success and outcomes-based models. This project has gone beyond the pure social impact bond model developed in 2010, offering variation in the types of stakeholders involved and the mechanisms by which funds flow. For example, this design could be applied in the United States where it would be challenging to do a traditional SIB with local government, as many parties have payment responsibility for HIV testing and care services. Private insurers and managed care organizations may be especially worthwhile partners in this context, particularly those with demonstrated commitment to address health equity and social determinants of health.
As the Foundation and others move forward with replication, the Zero HIV SIB experience shows the importance of putting the problem first, tailoring services carefully, and selecting a program model and partners for sustainable, long-term impact.