CDC: Most Americans Who Need HIV Treatment Aren't Getting It

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About 1.2 million Americans have HIV. Most of them know that they’re positive—only 14 percent are undiagnosed. But among those who know their status, fewer than half get care, according to new data from the Centers for Disease Control (CDC). The gap between diagnosis and treatment that can control the virus and reduce new transmissions represents the biggest challenge to slowing the spread of HIV in America.

“The science tells us that early treatment is good for the individual and it’s good for prevention,” says Mitchell Warren, executive director of AVAC, a nonprofit group advocating for HIV prevention measures. Both the U.S. health-care system and the social stigma of HIV keep advances in treatment from reaching people living with the virus, he says. “We’re seeing the same rates of new infections in the U.S. year, after year, after year. We are not winning, and we need to get ahead of this,” Warren says.

In recent years, HIV researchers have started talking about treatment as a cascade or continuum of care, beginning with diagnosis and continuing (ideally) until medications suppress HIV levels to the point that patients can expect a typical life expectancy and won’t infect partners. That means starting treatment, then getting (and staying on) antiretroviral therapies to reduce viral load. Missing any of those steps diminishes the number of people who have the virus under control.

In the U.S., about 30 percent of all people with HIV have the infection suppressed. That lags several European countries where more than half of cases are controlled, including the United Kingdom, France, the Netherlands, and Denmark, according to an analysis published in November by the Journal of the International AIDS Society.

(Percentages differ from the chart above because of different definitions.)

What are the barriers to accessing care in the U.S.? Having health insurance is one, and coverage gaps are wider in America than in European countries with universal health care. The Affordable Care Act will expand coverage, and its impact isn’t yet evident in the CDC’s latest data, which is from 2011. Still, about half of states aren’t expanding Medicaid under the act, meaning poor people in much of the country won’t be eligible for coverage through the state-federal health program. The federal Ryan White program helps fund services and medication for HIV and AIDS patients who cannot afford treatment, and about half of Americans with HIV benefit in some way.

Beyond coverage, patients may not have access to doctors prepared to treat HIV or clinics with support services to make sure patients make follow-up appointments, get lab tests, and adhere to medication regimens that involve taking pills for the rest of their lives. “Who are you interacting with when you learn your diagnosis?” says Jennifer Kates, director of global health and HIV policy at the Kaiser Family Foundation. “In general, having someone who is experienced with HIV care is really important.” Other circumstances, such as whether parents can get child care so they can go to doctors’ appointments, can keep people from getting needed treatment.

Social circumstances play a big role as well. New HIV infections in the U.S. disproportionately occur among young men, often blacks and Hispanics, who have sexual contact with other men. Imagine you’re a young gay man of color in rural America and you’ve just gotten an HIV diagnosis. It’s not hard to understand why some people without symptoms would opt to stay quiet, not knowing how doctors might receive them.

“There’s still a lot of stigma associated with HIV. That’s another reason why people don’t get treatment,” says Carl Schmid, deputy executive director of the AIDS Institute, an advocacy group based in Florida and Washington, D.C. “Particularly in the South, it’s just a different world than New York City,” he says. “People may not want to go to a general place for health care.”

Both gaps in coverage and social stigma will need to be addressed to get more people in treatment and lower the rate of HIV transmission. The government did not have a national strategy to address HIV in the U.S. until 2010, Kates said, three decades into the epidemic. The country has made great progress in getting more people diagnosed, but that’s only the first step to controlling the virus. Says Warren: “The heaviest lifts are still to come.”

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