Jeffrey S. Crowley, MPH, is the Program Director of Infectious Disease Initiatives at Georgetown University Law Center’s O’Neill Institute for National & Global Health Law.
AIDSVu spoke with Jeffrey Crowley about how the HIV care continuum has evolved in the past decade and how visualizing data can help policymakers target interventions at each stage of the continuum.
Q: You have been working in HIV for most of your career and served as the Director of the White House Office of National AIDS Policy when the HIV care continuum was published in 2011. What is the HIV care continuum and why is it important?
In 2010, while I was working for President Obama, we released the first National HIV/AIDS Strategy for the United States. While there were a number of goals within the plan, our main objective was to improve HIV outcomes and reduce HIV-related health disparities. Additionally, we wanted the strategy to be data-driven so we outlined new metrics and set goals for increasing rates of viral suppression.
The HIV care continuum is the step-by-step process of looking at all the things that need to happen to go from diagnosing a person with HIV, to getting them into care, keeping them in care, getting them on treatment, and then getting them to viral suppression.
When I was at the White House, other people started to publish their own care continuums. Denver Public Health published a modeling study and gave us the first national estimates of the care continuum. Eventually, this led the Centers for Disease Control and Prevention (CDC) to use national surveillance data to create a standardized national care continuum.
Quite frankly, when the HIV care continuum was published in 2011, the U.S. was doing terribly. Only 25% of people with HIV had gone through all the steps of the continuum and were virally suppressed. This was important because it’s the first time that we had a national estimate of how the country was doing regarding HIV treatment outcomes.
Having the care continuum show us where to focus our resources can drive real progress. Other findings have come out of understanding the care continuum, especially around the durability of viral suppression. Durable viral suppression, when someone living with HIV continues to maintain a low or undetectable amount of HIV in the body, is an important public health indicator. Viral suppression only works to keep peoples’ immune systems healthy and reduce HIV in a community if the person is able to remain suppressed. Just the fact that we have the data to show the durability of suppression gives us something to focus on improving.
Q: How has the U.S. continuum shifted over the last decade?
The HIV care continuum is so useful that the HIV field has fully integrated it. The data shows that the U.S. has done a fairly good job of getting people diagnosed, but we also know there is more work to do when we measure specific areas of the continuum. For example, we’ve made progress in testing, but there is a dramatic decline in successfully linking individuals to care after they receive a diagnosis.
You could look at where the U.S. continuum is now and say we are still not where we need to be. However, I also would say we can look at it from the glass-half-full approach and know we started at only one in four people with HIV being virally suppressed; now it is one in two. That’s major progress in a short period of time.
Q: What specific policy interventions are targeted at each stage of the continuum?
I love using the HIV care continuum as a model because you don’t have to have in-depth knowledge about data to intuitively understand its meaning. When policymakers are walked through the continuum, they can easily understand how it works. They don’t need someone to spend 10 minutes explaining the math – it’s just clear.
Additionally, it is really helpful that the continuum can be applicable at the jurisdiction and clinical levels. This tool not only gives you important information but also information that’s really actionable. For example, if you see that we’re doing a really good job of getting people diagnosed, but are less successful at linking them to HIV care services, that immediately tells you where to focus your energy.
I think a few policy interventions have targeted specific stages of the HIV care continuum, but we have also seen policies that use the continuum to target interventions by population. It’s been really helpful to see how we are doing with Black Americans compared to Latinx Americans or men who have sex with men (MSM) compared to other groups.
Looking at how we improved the HIV diagnoses, the first step of the continuum, we can see there are solid interventions that have helped. For example, our investments in community-based testing and more routinized HIV screenings have led to measurable improvements in our HIV testing abilities. Additionally, we have gotten more emergency rooms to routinely screen people with HIV and now they push to screen everyone not just those with underlying risk factors. Nonetheless, diagnosis rates remain way to low among young people.
We’ve done all those things to drive up our diagnoses rate, but the handoff to care has been weak and we have seen a gap between an HIV diagnosis and linkage to HIV care. In a policy intervention aimed to address this, CDC changed the funding requirements to encourage grantees to give a warmer and more successful handoff. For instance, a warmer hand-off could be physically accompanying a patient to a treatment provider or as simple as following up an appointment with a call to check-in. This is often a really vulnerable moment for people and each interaction matters. The policy intervention was to recognize this and make sure we get people connected to care as quickly as possible after an HIV diagnosis.
Retention in care is also key. I would like to reframe this for policy people, because the way we often talk about it in our community is by thinking there are a lot of people living with HIV that have a lot of challenges in their lives, which is why it is hard to retain them in care. I think we should take a step back and reevaluate what we are asking people living with HIV to do. We’re asking them to adhere perfectly over the course of their lifetime. Nobody makes every doctor’s appointment. Someone that’s an avid churchgoer misses church on Sunday every once in a while. Why is there such an unreasonable expectation set on those living with HIV? I think that the policy intervention here needs to be to understand that no one is perfect and life happens. We need to track retention in care and then address barriers to care and create more pathways to reengage them. One of the metrics we measure is missed clinic visits. If you start missing your clinic visits, that’s a signal you’re starting to fall out of care, so it is time to intervene.
I can’t say for every step of the continuum that there is one definitive policy response, but I think each stage presents different opportunities and every pillar needs the same level of attention. When you get to the end of the continuum the problem is helping those not reaching or maintaining suppression. Each person might have very specific needs and the solution cannot be one size fits all, but instead needs to be a tailored approach.
Q: AIDSVu is launching new data on the HIV continuum, visualizing new HIV diagnoses, late HIV diagnoses, linkage to HIV care, receipt of HIV care, and viral suppression for many of the cities across the U.S. How can these new data and maps help increase understanding of HIV’s unique impact on these cities?
I think it is important to focus our allocated money or resources as specifically as possible. In the past, we tried to allocate money based on metrics and the places with the most diagnoses received more money. But we learned this strategy was too broad and led to gaps in funding. For example, a state or city may have a relatively low level of HIV diagnoses, but when you look a little deeper there can be huge variations within the jurisdiction from place to place and across different groups. It’s a mix and you can go wrong if you just focus on populations just as you can go wrong when you just focus solely on geography.
Mapping at the ZIP Code-level can be surprising. If you look at the ZIP Code-level metrics of cities like Atlanta or Washington D.C., you’ll see huge disparities. The government can be giving D.C. as a whole its appropriate amount of resources, but we’re not always good about understanding that even within D.C. there are specific wards or neighborhoods that need a lot more attention. Visualizing data as AIDSVu does can spot these granular trends that may have been missed otherwise and help us respond appropriately.
Q: Many of AIDSVu’s maps can be stratified by age, race, and sex, helping researchers and policymakers visualize health disparities. At what points along the continuum are there the starkest disparities and how can communities address these disparities?
I think we need to give more attention to young people, specifically younger MSM. Data has shown that MSM are more likely to do worse at both the beginning and the end of the HIV care continuum. We need to take young people into account when thinking of interventions to ensure better medication adherence.
When we think of young people, especially young adults, we assume they’re adults and they can just fit in the system and either sink or swim. I think there needs to be a tailored approach that acknowledges young people face different challenges and have different needs. For example, if we have a campaign to increase HIV testing for gay men, we need to be much more intentional about focusing on young Black and Latinx MSM because they are disproportionately impacted and also often face different challenges such as stigma or language barriers. Sometimes these maps or other visualization tools may be the signal that we need to recognize that certain portions of a community aren’t being properly addressed.
Q: Why are policies and programs informed by data vital for ending the HIV epidemic?
If you look at the pillars of the federal Ending the HIV Epidemic: A Plan for America (EHE) initiative, they are taken straight from the continuum. There is a big focus on getting everyone diagnosed, supporting them, and retaining them in care services. I think that EHE is adopting the tailored approach the continuum helps facilitate by beginning their funding and attention focus on the 57 key jurisdictions.
In the U.S., our HIV diagnosis rate is respectable compared to other developed countries. However, when you look at our viral suppression rates, we are not on par with other countries. I think that is because of the complexity of our health care system in comparison. There are so many ways and opportunities for people to fall out of care and not become virally suppressed. With such a complex system who’s responsible for finding people? When you have a more universal system like other countries, it seems like it’s easier for them to get everybody in care and support them to stay virally suppressed. I will also say that if you compare the U.S. to other developed countries, we have a more complicated epidemic. We’re a large and diverse country and it may be a lot easier to do things with a smaller population.
Q: Why is viral suppression so important and what does it mean for the Undetectable = Untransmittable (U=U) campaign?
U=U is an important message for both people with HIV but also people that don’t have HIV. We have created a society where we’ve in some ways taught people to be afraid of people with HIV. U=U and PrEP are important because their message is there are actions you can take, whether you’re living with HIV or not, to prevent yourself and others from acquiring HIV. That is a powerful message.
There is a lot of nuance to the U=U message and some people had concerns about essentially overselling the message. Dr. Dieffenbach, the Director of the Division of AIDS at NIH’s National Institute of Allergy and Infectious Diseases (NIAID), likes to say that your viral suppression is only as good as your adherence. If you haven’t taken your medicine in two weeks, you’re not virally suppressed. We must communicate this message as a public health action and not just something for your own health. In the U.S., studies are showing that the vast majority of people with HIV work really hard not to spread HIV to others.
This message of taking your medicine every day and doing something to help yourself and those around you is really powerful. Something I’ve written about recently is how do we convey a message that’s hopeful and not stigmatizing? We need to convey that those living with HIV should aim to be virally suppressed – but this needs to be messaged carefully. Additionally, we should recognize that the barriers for people getting to durable viral suppression are greater for some people than for others. Viral suppression and U=U are important ideas to improve the lives of people with HIV and they cannot become new burdens imposed on people with HIV. As a community we need to find effective ways to support all people through the entire HIV care continuum and help them to maintain their suppression.