How Has HIV Testing Changed?
Almost 35 years into the global epidemic, HIV/AIDS has claimed an estimated 36 million lives. The first years in the early 1980s were marked by misinformation and terror. Scientists did not know what caused the mysterious illness, how it was spread, or how to treat it. Researchers eventually discovered the human immunodeficiency virus in 1983, two years after the first cases of the so-called “gay cancer” or “gay related immune deficiency” were first reported.
Isolating the virus lead to developing a diagnostic test -- two years later. The first commercial HIV test was approved by the Food and Drug Administration (FDA) on March 1, 1985. Testing technology and prevention have dramatically improved since that discovery.
The first test developed was the enzyme-linked immunosorbent assay — known as ELISA — by Abbot Laboratories. The blood draw tested for the presence of antibodies, which are proteins created by the immune system to identify foreign objects such as bacteria or virus. Testing meant the virus could be detected in the national blood supply. Thousands of people had become infected via blood transfusions.
“At that time, HIV/AIDS was almost certainly a fatal condition,” said Moisés Agosto, director of treatment education for the Washington, D.C., based National Minority AIDS Council. “Many people didn’t want to know or test because there was no treatment available.”
Agosto, a veteran HIV/AIDS treatment advocate and educator, received his positive diagnosis in 1986. His testing experience was typical for that time.
“You had to wait two to three weeks for a result,” he said. “The only counseling you received was when you got your results. I was told that it was a fatal disease, there was no treatment and that I would get sick within six months.”
“It was a horrible experience,” recalled Maria Mejia-Laing, the popular Miami-based social media activist, motivational speaker and TheBody.com video blogger. She learned her diagnosis in 1990 at the age of 18 during a routine checkup in Job Corps. “There was no compassion. The doctor was very hostile and angry. He told me, ‘You have AIDS.’”
“I was HIV positive but the doctor was very negligent in describing it as 'AIDS,'” Mejia-Laing said. “I had to later visit a specialist to learn the difference. That’s among the reasons why I eventually became an HIV outreach worker, tester and activist. I did not want anyone to receive the same type of misleading and stigmatic diagnosis.”
Faster Results, Faster Into Treatment
Today's epidemic -- at least in North America, Europe and across the developed world -- is much different than the 1980s and early 1990s. The introduction of antiretroviral therapy in 1996 has saved millions of lives and revolutionized health outcomes. Where treatment and care are available, HIV can now be a “chronic but manageable” condition -- essentially the same clinical prognosis as diabetes or asthma.
“The perception of HIV/AIDS has changed significantly,” Agosto said. “People can lead a healthy and productive life if they can start treatment as soon as possible.”
"Treatment as prevention” has become the cornerstone of the HIV treatment cascade. Aggressive antiretroviral therapy is prescribed soon after diagnosis. The early treatment makes that person much healthier, reduces viral load, and dramatically reduces the risk of transmission. A new testing model by the Centers for Disease Control and Prevention (CDC) estimates that nine in 10 of new infections could be prevented if every “poz” person was immediately linked to care.
Testing methods have also changed. The earlier generations of tests involved blood draws, and a three week wait for results that some people never came back for. Newer testing is less intrusive — using oral or urine specimens — and can yield results in 20 minutes or less.
“Rapid testing is brilliant,” said Steven-Emmanuel Martinez, a public health graduate student at Brown University. Martinez is writing his thesis on the effectiveness of pre-exposure prophylaxis (PrEP) counseling among young gay and bisexual African-American and Latino men. “The short interval of time helps to dispel much of the panic that could accompany a long waiting period."
The level of HIV in the body is at a peak very soon after infection, but it can take up to two months for the immune system to produce the antibodies that older tests measured. Thus, an HIV test taken during this window period could yield a “false negative” result. A second test was often suggested within three to six months after a negative result. Today, while widely used HIV antibody tests can still take up to three months to detect HIV after time of infection, new "generation four" antibody tests can pick up infections in 10 days.
But not everyone gets HIV tests, or gets them frequently enough. Researchers believe that about 20% of HIV-positive people are unaware of their status. Those numbers are even higher among African Americans and Latinos who disproportionately are impacted by the epidemic. They are more likely to be “late testers” and diagnosed with AIDS within one year of their HIV diagnosis. That means they are less likely to benefit from life-saving medications.
Stigma Still Affects Testing Decisions
The technology behind testing and treatment has dramatically changed, but many of the negative attitudes from the earliest days of the epidemic remain. The stigma of being HIV positive remains pervasive. Many experts believe that stigma is a huge factor in driving the epidemic -- and in keeping people away from HIV testing.
“Stigma plays a major role in deciding if someone will get tested,” Martinez said. “[But] the narrative that young black and Latino gay and bisexual men are not getting tested is inherently flawed. Look at the surveillance and epidemiological data.”
Martinez and other researchers point to the success of national awareness campaigns such as Testing Makes Us Stronger, which targeted African-American gay and bisexual men, who have high rates of infection despite equal or lower levels of behavior that could lead to infection when compared to white gay and bisexual men. But much more prevention funding and resources must be targeted at this demographic, according to amfAR in its report "HIV and the Black Community: Do #Black(GAY)Lives Matter?"
Meanwhile, many members of African-American and Latino communities still must confront multiple, intersecting challenges such as poverty, unemployment, incarceration, health disparities, violence and more. Confirmation of an HIV diagnosis can add an additional challenge to that list.
“When you are confronting racism and homophobia and when your black body is being prodded by the media,” explained Martinez, “then you have to ask yourself, ‘Do I want to add an extra layer or identity? Do I want to get tested to find out if I am HIV positive?’”