Many with HIV don’t know they’re infected

Report says half have had disease for three years without knowing

Half of the Americans recently diagnosed with HIV had been living with the virus for at least three years without realizing it, missing out on opportunities for early treatment and in some cases spreading it to others, according to a new report by the U.S. Centers for Disease Control and Prevention.

What’s more, of the 39,720 Americans newly diagnosed with HIV in 2015, onequarter had been infected for seven years or more without knowing they were ill.

Among all 1.2 million Americans living with HIV in 2015, the CDC estimates that about 15 percent were unaware of their HIV-positive status. In Maryland and Baltimore, the rate is essentially the same, according to the CDC and the city’s health department. There were 32,449 people in the state living with HIV as of September, the most recent numbers available, according to the Maryland Department of Health.

Nationally, the people unaware of their HIV status are thought to be responsible for 40 percent of new transmissions of HIV, according to the study recently published in the CDC’s Morbidity and Mortality Weekly Report.

The news is not all bad, however. Friday was World AIDS Day and the CDC also reported that the estimated number of annual HIV infections in the United States fell nearly 20 percent between 2008 and 2014, after remaining stable since the mid-1990s.

Maryland saw one of the biggest drops, the CDC reported last February. Cases in the state dropped an average of 7.5 percent per year from 2008 to 2014. That was more than twice the national decline of 3.6 percent per year. Local public health officials attributed the progress to education campaigns, a push to get high-risk people tested and treated, drugs that block infection and, most notably, needle exchange programs in Baltimore.

The human immunodeficiency virus, or HIV, is responsible for causing AIDS. Infection was considered a death sentence until antiretroviral medications capable of suppressing the virus came into broad use in the late 1990s. But people can’t get the drugs they need if they don’t know their HIV status, said Dr. Patrick Chaulk, assistant commissioner of the bureau of HIV/STD services at the Baltimore City Health Department.

It’s important for people to know their status because the virus is highly infectious and more likely to be spread to others in the early stages of infection, Chaulk said. It is also better to begin treatment as early as possible.

“The sooner you get a diagnosis and get into care, the less damage that will happen to your immune system” Chaulk said.

There are larger public health implications for the city if people who are HIV-positive don’t know their status. It makes efforts to eradicate the disease more difficult because people may be unknowingly infecting others, Chaulk and others said.

Although the Affordable Care Act made HIV testing free for everyone, doctors and other medical providers say the reasons why people don’t get tested vary from distrust of the medical system to fear of being judged or stigmatized. Others mistakenly may think they are not at risk and don’t use condoms, not realizing that they’re engaging in risky behavior, said Dr. Anthony Amoroso, associate professor of medicine at the Institute of Human Virology at the University of Maryland School of Medicine.

“People may not know or understand the risk factor of their sexual partner,” he said.

The symptoms of HIV are subtle in the beginning — some fatigue, maybe mild flu-like symptoms — and may not be enough to prompt someone to seek medical care, much less an HIV test.

“Testing happens mostly when people interact with the health system and that can be pretty infrequent with young people, particularly men,” Amoroso said.

In other cases, people may not want to know their status because that would mean facing the possibility that they have the disease.

Sally Bjornholm, a clinical social worker and program manager for The Jacques Initiative, a program through the Institute of Human Virology that provides HIV testing throughout Baltimore, said she sometimes sees this at a crisis center where she volunteers.

“There are some people that know that they have been exposed,” she said. “It is easier not to know than to get tested and know so they can stay naive and in the dark rather than face that they are HIV-positive. Part of testing is so that people know their status so that they can change their behaviors.”

Many testing programs, including those at the Baltimore health department and at Jacques Initiative, now test everyone and not just those considered most at risk.

Although the CDC found the median time between infection and diagnosis for all Americans was three years, there was considerable variability among patients of different racial and ethnic groups.

For instance, half of African-Americans had been infected for 3.3 years when they were diagnosed, while the median time for whites was 2.2 years. This gap was seen despite the fact that African-Americans were more likely than whites to have been tested for HIV in the previous year. For Latinos, the median time to diagnosis was also 3.3 years; for Asian-Americans, it was 4.2 years.

The authors of the CDC report surmised that the longer diagnosis delay among nonwhite racial and ethnic groups might reflect an observed trend: For whites, men who have sex with men are the predominant sources of HIV spread, but for other groups, sexual contact between men and women is responsible for a higher proportion of infections.

Age, too, was a key factor, with older patients more likely than younger ones to go years without knowing they were HIVpositive. Half of newly-diagnosed patients 55 and over were HIV-positive for 4.5 years or more without knowing it. Among those 34 and younger, the median delay between infection and diagnosis was about 2.5 years.

Overall, the three-year gap between infection and diagnosis actually represents progress. In 2011 — the last time the CDC took such measures — half of Americans newly diagnosed with HIV had been infected for 3.6 years or more. That suggests that public health campaigns started by the CDC, including the “Testing Makes Us Stronger” push rolled out in 11 cities, have made inroads. Two CDC campaigns, launched in 2007 and 2011, set out to encourage testing and early HIV care on the part of African-Americans and Latinos, and particularly among men who have sex with men.

Such public health efforts have increased rates of testing among many groups at high risk. Among men who have sex with men, 71 percent told surveyors they had been tested in the last year, as did 58 percent of people who inject drugs. Only 41 percent of heterosexual Americans at increased risk of HIV infection said they had been tested in the last 12 months.

Taking HIV medicine as prescribed allows people with the virus to live a virtually normal lifespan, generally without health complications. Managing one’s HIV infection with medication also significantly reduces the likelihood of transmitting the virus to sexual partners.

“The benefits are clear,” said Dr. Jonathan Mermin, director of the CDC’s National Center for HIV/AIDS, Viral Hepatitis, STD, and TB Prevention. “Prompt diagnosis is prevention. It is the first step to protecting people living with HIV and their partners.”