Attendees of the Monday, March 5, panel at the Conference on Retroviruses and Opportunistic Infections (CROI) discussing the HIV care cascade were probably expecting your usual set of presentations on what we're getting right or wrong about testing, linkage to/retention in care, and viral suppression. Those elements were there. But what was also clear from every presenter (a group that includes both researchers and medical providers) was that the lack of Medicaid expansion in the South is creating worse racial disparities in the U.S.
The symposium, Strategies for Improving the U.S. Care Cascade: Confronting a Fragmented Health System, presented some data on where we stand nationally on the different bars of the HIV care cascade. It pointed to some examples of where we need to look at states, cities, counties and even down to clinics to understand what strategies we need to intervene in systems that are producing uneven results across the country and putting us behind some of the progress we're seeing in other countries.
"Where are we globally?," asked Carlos del Rio, M.D., the professor of medicine and chair of the Department of Global Health at Emory University, during his presentation. "Forty-four percent of all [people] living with HIV globally are virally suppressed. Where we are in the United States puts us at 38% of all people with HIV are virally suppressed. And really where you see the challenges, globally the challenge is diagnosis, where only 70% of people are diagnosed. But once you get past diagnosis you tend to do fairly well. In the United States it's very different. We do well on diagnosis but in retention in care we have a lot of challenges."
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How is the wealthiest nation in the world falling behind the rest of the globe in most areas of the care cascade? One of the major challenges of retention in care and achieving higher rates of viral suppression, according to presenters, has to do with unequal distribution of health care coverage, access to health care facilities, and adaptable care models that serve the needs of the most vulnerable people, who may need more support. And though there is not much research that has yet linked Medicaid expansion under the Affordable Care Act definitively to improved outcomes along the continuum, it is clear the regions that have expanded Medicaid (and generally have stronger public health and medical care systems) are making more headway, and in some cases, seeing rates of new diagnoses beginning to drop.
"Of the 2.4 million people who have not benefitted from Medicaid expansion, 89% live in the South, with Texas, Florida, Georgia and North Carolina being the place of residence of 62% of people who haven't benefitted from Medicaid expansion," said del Rio. "It turns out that those four states are where 40% of new infections took place in 2016."
Medicaid is the largest insurer of people with HIV, and as of 2014, 4 in 10 people with HIV were covered by the program. As of 2014, Medicaid reduced the national percentage of uninsured people with HIV from 14% to 7%. This is the most recent data available, and does not account for the state of Louisiana, which expanded Medicaid in 2016 and became the nation's leader in the percentage of people who gained insurance coverage. Nearly 30% of all people with insurance in Louisiana are covered by Medicaid.
And while Medicaid coverage would most likely benefit people with HIV in the South, and increase access to care, there are also other gaps in health care systems that need to be addressed that insurance alone cannot solve.
"All health care is local, all health systems are local," said Michael Mugavero, M.D., MHSc, professor of medicine with the University of Alabama at Birmingham, while presenting on engagement in care. Mugavero talked about the need to bring up the health care parity through national programs like Medicaid expansion in the South, but also the need to look hyper-locally at outcomes along the cascade to figure out the best interventions for people in that area. To prove his point, Mugavero used data to show how Alabama has shortened its median time to viral suppression across the state from 10 months to 6 months from 2012-2014. But even with some success, there were great variations across the different public health regions across the state.
While all presenters also discussed the importance of getting to viral suppression (and Mugavero specifically gave accolades to the U=U campaign for transforming the lives of his own patients in Alabama), they also pointed to the need to understand that viral suppression is a fixed point in time and more work needs to happen with providers and systems to ensure continuous viral suppression is possible for more people. And that means taking a look at different care models.
"I think the structure of the appointment and the way that it's done may not be the structure that works for everyone," said Mugavero. "If we're going to enhance care engagement, and reach the subgroups that are disproportionately having challenges, it's not going to be continuing to try to visit that same system. "
The HIV care cascade also is not a fixed, one-direction, framework. People may be virally suppressed but then may not sustain it for various reasons. People may fall in and out of care for many reasons.
When presenting research on programs that have failed to adequately link people to care, Julie Dombrowski, M,D., M.P.H., associate professor of medicine and allergy & infectious diseases at the University of Washington in Seattle, noted, "Relinking individuals to the same system of care that failed to engage them in the first place is not an effective strategy for most of those who are out of care. This will require a shift from thinking about patient factors to program factors to increase engagement in care."
An overarching message in all the presentations was a need to ensure health care coverage through expanding Medicaid coverage, especially in the Southern states, but also to innovate new models for delivering care. Outside the walls of the Hynes Convention Center in Boston, however, plans to allow states to shrink Medicaid rolls by creating work requirements or lifetime limits force the program, and the lives of people who depend on it, to hang in the balance.