Why Life-Saving Drugs Haven't Ended AIDS in the U.S.

MIAMI—The glittering skyscrapers seen from the streets of Overtown may as well be visions from another planet. The largely African-American neighborhood has among the highest poverty rates in Miami. At night, children bicycling up and down the sidewalk pass drug users lighting up in plain view.

One recent Thursday evening, a mobile clinic pulled up outside a bar in Overtown and about four outreach specialists got out. They handed out condoms, chatted with locals, and encouraged listeners to head inside the van for free, fast HIV testing and other screenings. At one point, a couple of specialists ran into the street and helped a falling-down drunk woman out of the path of an oncoming bus.

On a team known for dedication and street sense, outreach specialist Donald Crews is considered something of a master. He’s the quiet, fatherly presence who knows where to park the van, whom to approach, and whom to avoid. He’s the guy who will not only help the dangerously drunk woman out of the road but who will sit with her until the ambulance arrives. “I can really connect with the people, as I’ve been there and done that,” Crews says. He became involved in outreach work after kicking a crack cocaine habit of his own.

(Centers for Disease Control and Prevention)

Six days a week, Borinquen Medical Centers of Miami Dade’s mobile clinic heads to neighborhoods where doctors are scarce. The program’s goal is to find HIV-positive men and women and link them to medical care as quickly as possible. Combating the spread of HIV in Miami’s most disadvantaged neighborhoods starts with testing and depends on building trust.

Lack of Access to Care Drives the HIV Epidemic

HIV, the sexually transmitted and blood-borne virus that leads to AIDS, can now be as manageable a condition as diabetes. The key word is “can.” In Florida, the HIV death rate is almost 10 times higher for African-American and Afro-Caribbean residents than it is for whites. Nationwide, minorities are more likely to become infected with HIV, less likely to be know they’re HIV positive, and less likely to be consistently taking the antiretroviral medication needed to suppress the virus.

The Obama administration wants to reduce racial disparities in infection and treatment, and has called on federal agencies to work together to meet that goal. Borinquen, a community health center that primarily serves low-income black and Latino clients, knows firsthand that taking on HIV also means addressing the overlapping problems of substance abuse, mental health, and stigma.

Miami ranks second in the country both in the number of residents living with HIV and in the number of new infections. Here and nationwide, the hardest-hit populations are black people and gay men. New infections are often linked to drug use, primarily because people have riskier sex when they’re high. A recent study from Fort Lauderdale’s Nova Southeastern University found that, of gay men who moved to South Florida and got involved in the area’s drug-fueled party scene, about 30 percent became HIV positive within five years of their arrival.

While risk-taking behavior helps fuel the epidemic, it doesn’t explain racial disparities. To understand why not, it helps to take a look at the U.S. population hardest hit by HIV: black men who have sex with men. That group, comprising less than 1 percent of the population, accounts for one in three new HIV diagnoses. Yet the Centers for Disease Control and Prevention has found that black gay men are no more likely to engage in risky sex or to use drugs than other gay men.

Almost certainly, the disparity is driven by the fact that African-Americans are less likely to receive medical care, says Ronald Stall, professor at the University of Pittsburgh Graduate School of Public Health. Disparities exist “around finding out whether you’re HIV positive; and if you’re positive getting into care; and if you’re in care being able to achieve an undetectable viral load,” he says.

(Centers for Disease Control and Prevention)

Because black gay men tend to get diagnosed later, they’re sicker when they are diagnosed and their survival rates are lower. HIV positive people who are out of care are also significantly more likely to infect others, because they’re not taking medication that both substantially reduces the presence of HIV in their bodies and the risk of transmitting the virus. Adding fuel to the fire, Stall says, is that race is a strong predictor of whom Americans will have sex with.

The availability of life-saving medications has made many people apathetic about HIV testing. But people at high risk of infection—gay men, drug users, sex workers—should be getting tested every three months. Medically underserved communities need access to both testing and treatment.

Borinquen’s Response

Borinquen Medical Centers of Miami-Dade started its outreach program in 2001. Funded through federal grants, the program currently involves two vans, 19 staff members, and a focus on substance-abuse prevention. Outreach specialists are recruited locally, as the National Institute of Drug Abuse suggests. Almost all of the specialists are bilingual, and most are fluent in three languages: English, Spanish, and Haitian Creole.

Last year, the team conducted 5,100 HIV tests and connected 120 people to care at one of Borinquen’s seven locations. Typically, about 3 to 4 percent of people who receive an HIV screening test positive.

To reduce the stigma of HIV testing, Borinquen rolls it into a bundle of other tests, including screenings for hepatitis, blood pressure, and glucose. Results are processed in 15 to 20 minutes. In Overtown, it didn’t take long before residents started forming a loose line outside the mobile clinic. “Where are my familiar faces?” one young woman asked, recognizing the van but not the outreach specialists outside it.

The van doesn’t leave a neighborhood until residents lose interest. Once, the team stayed at a trailer park until midnight in order to serve a large group. “It was almost a mob, not a line,” recalls Blanca Galvez, an independent evaluator of Borinquen’s program who sometimes travels with the team. To leave before everyone waiting had seen a medical assistant would have been a betrayal. “If you were ever planning on coming back to that area, you couldn’t just leave,” Galvez says.

Winning the trust of local communities makes what comes next possible. When someone tests positive for HIV, the outreach specialist who delivers the news also shares his or her cell-phone number, so the recently diagnosed person can call when ready to get into treatment.

Reactions to a diagnosis range from fear to denial to indifference, outreach specialist Moises Hernandez says. Some people fear cost of the treatment more than the virus itself. Some are too depressed to care. While the mobile van lingered in Overtown, an androgynous, stick-thin person got up close to Galvez and muttered, “Do you think that in my horrible life, having HIV is my only f—-ing problem?”

In the Haitian community, the stigma surrounding HIV is so deep that people can be extremely reluctant to get care—and if they do, they sometimes don’t tell their spouses. “We are seeing a lot of Haitians that have come in very sick into our clinic, because they have AIDS,” says Barbara Kubilus, chief special programs officer at Borinquen Medical Centers of Miami-Dade.

Typically, Hernandez says, once a client reaches out it takes about three months to convince the client to see a doctor and about three more to get the client comfortable with coming in to Borinquen’s chronic care center regularly for appointments and prescription refills. When clients first come in to meet with a doctor, they sign a release allowing Borinquen staff to come to their house and find them if they stop showing up.

Borinquen works to make care as affordable and accessible as possible. The medical center helps clients sign up for health care coverage under the federal Ryan White HIV/AIDS program, Medicaid, or insurance on the new state exchanges, and it charges uninsured clients according to their ability to pay. Borinquen helps homeless clients find shelter, connects drug addicts to residential treatment, and will provide free transportation to and from appointments. Each HIV positive client is assessed by a behavioral health specialist, assigned a case manager and a primary care doctor, and medical professionals share health records internally to coordinate a patient’s care.

Still, some patients slip through the cracks. Although Borinquen’s six-month followup rate with HIV-positive clients is 90 percent, 62 of the 120-HIV positive people who received care at Borinquen last year have since stopped coming in for treatment. Antiretroviral drugs are so valuable on the black market that some clients choose to sell their medicines for cash.

Many HIV-positive men and women need logistical and emotional support as much as they need medicine. When new clients are brought to Borinquen, the first person they meet might be Angel Camacho. “There’s no reason why anyone should have to die from HIV,” Camacho, a prevention case manager, tells them. He should know. He’s living with HIV himself.

Republished with permission from National Journal, whose Next America project explores the political, economic and social impacts of profound racial and cultural change facing our nation.