For Americans with HIV, there are many obstacles to successful treatment

AIDS care in America is like a set of nested Russian dolls, each figure smaller than the one it’s inside. ¶ About 1.2 million Americans are infected with HIV, the virus that causes AIDS, according to the U.S. Centers for Disease Control and Prevention. Of that total, 80 percent know they are infected; 62 percent have sought medical care after diagnosis; 41 percent have stayed in care; 36 percent are receiving life-extending antiretroviral drugs; and 28 percent have no HIV detectable in their bloodstream as a result of treatment. ¶ “The issue of how to treat patients is a done deal. We know what to do,” said John G. Bartlett, 76, who watched the AIDS epidemic unfold as head of the division of infectious diseases at Johns Hopkins Hospital from 1980 to 2006. ¶ Today, the big issues are how to find the patients, test them, get them into medical care and keep them there, provide them medicines, educate them and follow their progress.

This cascade of challenges reflects both the peculiarities of this disease and medical care in the United States.

Gallery

A photographic history of the AIDS epidemic in the United States.

HIV infection is an ailment associated with poverty, denial, prejudice and risky behavior. Unlike nearly every other infectious disease, it requires meticulous, lifelong therapy, which also happens to be expensive, averaging $25,000 a year. Half of the money goes for pills, which must be taken every day.

At the moment, virtually all HIV-positive Americans who need medical care — including combination antiretroviral therapy — can get it if they want. That’s true even for people with no money. But it requires a huge investment of time and energy by patients, doctors and case managers — and will require more if the Russian-doll statistics are ever going to change.

“If we’re going to actually see ‘the Beginning of the End of AIDS’ that everyone is talking about, we’re going to have to help people move through each and every step of care,” said David R. Holtgrave, head of the Department of Health, Behavior and Society at Johns Hopkins’s school of public health.

Untreated HIV infection is usually fatal. Since the start of the epidemic, 620,000 Americans have died from AIDS, with about 18,000 more dying each year. The illness progresses slowly, however, and for many HIV-positive people, finding treatment isn’t the most pressing problem in their lives.

That was clear last year when the organization AIDS United, which is overseeing 10 outreach projects for HIV-positive people across the country, asked a sample of its clients to name their “most urgent need.”

Housing was the top answer in San Francisco (38 percent) and Louisiana (37 percent). Nine percent of people in San Francisco cited food as their most pressing need while 10 percent in Louisiana said it was dental care.

Queried about “barriers to care,” 53 percent of people in San Francisco named transportation, 29 percent of people in North Carolina said money and 26 percent in Louisiana said stigma.

“We know that folks are out of care for a reason. This gives us an idea what the reasons are,” said Cathy Maulsby, a Johns Hopkins researcher.