'My Patients Fell Through the Cracks,' Physician Laments

Heather Boerner

March 20, 2018

BOSTON — Recently, Charlotte-Paige Rolle, MD, from the Orlando Immunology Center, received two phone calls a physician never wants to receive: two of her former patients had tested positive for HIV.

Rolle works at a leading infectious disease clinic in Florida, which has one of the largest populations of patients on pre-exposure prophylaxis (PrEP) for HIV prevention in the state. The clinic is private and requires that its members be covered by insurance.

The two young men had recently finished seasonal contracts, so had lost their health insurance. As a result, they had left Rolle's care. Although the county has announced plans to open a PrEP clinic, that has yet to happen, so she had nowhere to refer them when they left.

It's heartbreaking. It's exhausting. But you can't stop fighting the good fight.

"My patients fell through the cracks" of a fragmented healthcare system with a threadbare safety net underneath, especially in the southeast United States, where HIV is hitting the hardest, said Rolle. "It's heartbreaking. It's exhausting. But you can't stop fighting the good fight."

The good fight — a big, public battle with physicians on the front lines — is exactly what is needed to end the epidemic, especially in the South, Carlos del Rio, MD, from Emory University in Atlanta, told a rapt audience of HIV providers and researchers here at the Conference on Retroviruses and Opportunistic Infections (CROI) 2018.

As Congress and government officials roll back reforms related to the Affordable Care Act, as officials encourage work requirements for Medicaid recipients, and as Congress prepares to vote to reform the 340B Drug Discount Program, which helps fund many HIV clinics, the time for quiet reform is over, del Rio argued. Rather than fighting to keep reforms, physicians need to fight for expanded Medicaid and a comprehensive, integrated healthcare system that will help patients like Rolle's.

"We need to act up," he said. "Be passionate, be angry, and don't accept the status quo."

Disparities in the Deep South

del Rio's fervor for these issues is rooted in his work as a physician and a researcher. When he described the progress the United States has made toward its 90-90-90 goals, he painted a damning picture of patients lost to follow-up, missed in poorly funded public-health systems, and ignored by politicians ideologically opposed to universal healthcare.

He started with the basics: Overall, 85% of American adults with HIV have received a diagnosis — which is very close to the UNAIDS goal of 90%. But then he looked closer.

Of the young people infected with HIV, 44.4% have not been diagnosed. At the state level, the disparities continue. In Pennsylvania, 90.0% of infected people have been diagnosed, but that number drops significantly in the South. In Texas, only 80.8% of people have been diagnosed, and in South Carolina, only 82.7% have.

This is simply telling us that people are still dying of uncontrolled HIV infection.

But it is the statistics on retention in care — defined as sustained, continuous care for more than 12 months — where the care cascade really breaks down, del Rio reported.

Take, for instance, the racial difference in the care cascade for men who have sex with men. In one modeling study (Lancet HIV. 2014:e112-e118), del Rio and others showed that more infected white men than infected black men who have sex with men had been diagnosed with HIV (84% vs 75%). And of the black men, only 33% were linked to care and only 24% were retained in care. Those data mean that only one in five infected black men who have sex with men would be on antiretroviral treatment, and just 16% would achieve viral suppression.

"This is simply telling us that people are still dying of uncontrolled HIV infection," he explained.

Lost to Fragmented Healthcare

Then he brought up other statistics, ones not usually presented at a medical conference. In the InvolveMENT study, del Rio and his team correlated HIV rates in Atlanta to common risk factors, such as unprotected anal sex and age-disparate relationships.

But those factors were not associated with HIV disparities in black men who have sex with men.

What was associated was a lack of access to health insurance, which, according to data published on AIDSVu.org, is also associated with lower educational attainment, a higher likelihood of poverty, and a higher likelihood of living in an area with high income inequality, del Rio reported.

Then he showed a map identifying which states have expanded Medicaid. Nearly nine of 10 people who have not benefited from Medicaid expansion live in the South. And nearly two of three of those people live in just four states — the states where 40% of HIV diagnoses were made in 2016.

Add to that the problem of continuous retention in care, which shows that long-term follow-up is highest in the West and the Northwest, and far higher for white than for black people. The cohort with the lowest levels of retention is black people in the South.

But there are glimmers of hope, del Rio said. Integrated healthcare systems, such as Veterans Affairs (VA) hospitals and Kaiser Permanente, have far better care continuums. In VA hospitals, 73.0% of the patients are maintained on treatment and 65.0% achieve viral suppression. And the Ryan White care clinics, which keep some Americans with HIV enrolled in care, have viral suppression rates of 84.9%.

Although many of those are low-income patients, they are not bumped out of care for financial reasons and are not saddled with the costs that people in the open healthcare market face.

"Now, if you really want to see retention in care, go to Canada," he said. "They have a universal healthcare system, and therefore the continuous retention is much better than it is in the United States."

At this, del Rio had to pause because he was drowned out by applause from the floor.

Not until he had presented all of his data did he make the case for physicians as activists. "Political support matters," and you don't get political support without activism, he said.

"In New York state, Governor Cuomo has made a commitment to end the AIDS epidemic," he said. However, "in my state — Georgia — we have state legislators, like the wife of former Health and Human Services Secretary Tom Price, talking about HIV patients in terms of carriers and quarantine."

This means that physicians must not only be on the front line in their clinics, they also must be on the front lines in Congress and at their local statehouses, working with local officials to make the case for funding and political support.

If we don't raise our voices, no one is going to do it for us.

"A lot of these disparities are due to the social determinants of health," del Rio said. "Push to increase access to health insurance. Push to expand Medicaid. It is not going to be easy with this administration and in this political climate. Let's change the name of Obamacare to Trumpcare. Just do something."

He urged physicians to lobby the Centers for Disease Control and Prevention (CDC), the National Institutes of Health, and the Health Resources and Services Administration to fund research on ways to durably retain Southerners and black men who have sex with men in HIV care and ways to target PrEP to black men who have sex with men. And he urged them to lobby legislators to help them understand the impact changes to the 340B Drug Discount Program, which makes HIV medication free through Ryan White clinics, will have on communities affected by HIV.

"Where are the ACT UPs?" he asked. "Where are the people making a ruckus?"

"If we don't raise our voices, no one is going to do it for us," he said.

Unequal Deployment of 90-90-90

After del Rio's presentation, Benjamin Young, MD, from the International Association of Providers in AIDS Care, who identifies himself as an HIV care provider and activist, railed against the unequal movement toward 90-90-90 goals and pointed a finger at the United States.

Developing countries such as Botswana, Kenya, and Uganda are doing a better job of reaching those goals with all their citizens than the United States is in general and the South is in particular.

"Cambodia does a better job than we do," he said, raising his voice as he spoke. "It's not about the gross national product. It's about whether government leadership gives a damn about the health of its citizens. If we can't mobilize this today, in the twenty-first century, with the tools and finances that we have, but Cambodia and Botswana can, we have a serious, serious problem with leadership."

And we do have the tools. During the same session, data from the MAX, or Maximum Assistance, Clinic — which is improving continuous engagement in care and viral suppression in people with unstable housing and substance use issues — were presented by researchers from the University of Washington in Seattle. The clinic does this by offering patients walk-in medical care, food vouchers, cell phones, bus passes, and cash incentives.

A few years ago, Jeanne Marrazzo, MD, moved from Seattle, where she worked with the MAX Clinic, to Birmingham to run the division of infectious disease at the University of Alabama. When she arrived in Birmingham, she wanted to implement the MAX Clinic protocol, but so many basic HIV needs were going unmet that finding the resources and setting it up was not her top priority.

"That is layers and layers deep for us," she said. "We aren't even getting healthy young gay men into the clinic."

In Seattle, it was a given that politicians would fund HIV services because "it was the right thing to do." But you can't assume that in Birmingham, she said.

Southern-style Activism

"Activism here is very different," Marrazzo said. "It's very relational. Getting the mayor to come to our World AIDS Day event this year was a big deal. It was exciting."

Marrazzo and her Southern colleagues have been to all the same presentations that other CROI attendees have been to. "We know what we need to do. It's just that the process and the barriers are very different," she explained. "And things are so much more complicated by the profound poverty and educational divide."

Also during the session, Michael Mugavero, MD, from the University of Alabama at Birmingham, described his work with the CDC to generate enough data to show local public-health departments where the greatest HIV needs in the state are.

He said he considers grassroots activism designed to mobilize every HIV clinic in the state to meet with community organizations on a quarterly basis to be just as important as talking to state or federal legislators.

"There are going to be local solutions in the South, but they are not going to come from the governor's office, and they are not going to come with a lot of extra dollars."

Filling the Cracks

Having been trained by del Rio at Emory University before moving to Florida, Rolle said she's already advocating for her clinic to offer a back-up PrEP clinic for underinsured and uninsured Floridians. To her, this is pragmatic activism.

"We are living in red states" in the South, she said. In addition to political support and public funding, "what are the other avenues? How can the private sector support the public?"

She has made the business case and reported that the price to her clinic would be minimal. What she learned in Atlanta, she explained, is that it is clinic leadership — unwavering in getting what patients need is essential — that rallies decision makers, finds the money, and gets care to patients.

"It can be done," she said. "But someone has to want to do it."

del Rio has consulted for ViiV Healthcare and InnaVirVax. Rolle, Young, and Marrazzo have disclosed no relevant financial relationships.

Conference on Retroviruses and Opportunistic Infections (CROI) 2018: Abstracts S4-60, S4-62, and S4-63. Presented March 7, 2018.

Follow Medscape on Twitter @Medscape and Heather Boerner @HeatherBoerner


Comments on Medscape are moderated and should be professional in tone and on topic. You must declare any conflicts of interest related to your comments and responses. Please see our Commenting Guide for further information. We reserve the right to remove posts at our sole discretion.