It’s a quick thumb prick followed by a long wait. Maybe the 20-minute wait time isn’t that long, in the grand scheme of things. But when you’re waiting for your Human Immunodeficiency Virus (HIV) test results to appear, it’s hard not to wonder if, per chance, the clock on the wall is possibly broken.
You study your hands, study the HIV prevention posters on the wall, study the face of the HIV counselor who’s asking you questions about your risk factors. You sneak a furtive glance at the ambiguous white medical testing strip sticking out of your blood sample, hoping that the sign the test designers chose to signify a negative is something easily legible like a smiley face (it’s not). And then you wait some more.
If this scenario isn’t familiar to you, well, you’re not alone. As HIV transmission rates have slowed, so too has HIV testing. In the last 10 years, due to better treatment options offering longer, more normal lives of those living with the disease, HIV and AIDS has almost fallen off the general population’s radar.
“There’s very little being said about HIV right now,” says Dan Mitten, director of education for the Island Coast AIDS Network (ICAN), adding, “People assume it’s only in Africa. I actually had someone say to me, ‘Isn’t there a cure for that?’ Not unless you’ve been reading some medical journals that I’ve missed. No, there is no cure.”
And there’s a real danger in HIV and AIDS education being pushed into the cobwebbed edges of the public’s consciousness. As getting a regular HIV test becomes that one, perpetually forgotten action item on society’s “to do” list, incidents of late diagnosis AIDS have slowly been climbing.
“What we’re seeing more and more of is late stage AIDS diagnoses,” says Bob Hutton, the HIV/AIDS surveillance coordinator for the Collier County Health Department. “People aren’t coming in until they’re really, really sick, and then there’s not a always a lot we can do.”
To understand why this is a problem, you need to understand the difference between HIV and AIDS. The Human Immunodeficiency Virus is believed to be the precursor to Acquired Immunodeficiency Syndrome. According to the Centers for Disease Control and Prevention (CDC), the way HIV progresses into AIDS is still somewhat unknown, however it is safe to say that the majority of people who are infected with HIV will eventually contract AIDS. AIDS is what will eventually kill you, but the time it takes for HIV to progress to AIDS can vary. The new antiretroviral drugs can keep HIV from progressing to AIDS for years, and according to Mitten from ICAN, people who are diagnosed with HIV early have a good chance of living into their 70s and 80s.
But the problem is getting people to get tested early.
There’s a misconception among many that if you contract HIV, you’ll get sick within a few weeks. Unfortunately, HIV can live symptom-free in your body for up to 10 years. If you’ve engaged in any sort of HIV risk activity in the past 10 years, you most likely need to be tested. Even if you’ve been with only one partner for the past 10 years, the CDC suggests you should be tested annually, as often relationships are less monogamous than people assume them to be.
All four individuals interviewed for this article stressed the same thing: a surprising amount of the cases they see are in couples who assumed their partner was monogamous. And in many cases like this, the HIV-positive spouse or partner doesn’t get diagnosed until they are very, very sick.
“It’s really hard for us to bring someone who is very sick with AIDS back to full health,” warns Nilda Proenza, the HIV/AIDS and hepatitis program manager for the Collier County Health Department. Which is why she advocates that everyone who is sexually active get tested annually, and is frustrated that that really isn’t happening.
“I’ve been sick for almost a month. I’ve been in and out of my doctor’s office and not once have they suggested that I get an HIV test,” says Proenza. What Proenza has is not HIV, but instead was finally diagnosed as pneumonia, but her point is this: doctors should be asking their patients when their last HIV test was.
Isidra Gomes, the health services supervisor for the Collier County Health Department, agrees. “I don’t get asked either, and we need them to ask. When I go into fancy doctors offices and want to drop off literature about HIV they’ll say, ‘No, we don’t want that in here. We’ll talk to our patients about that in the examining room.’”
But are doctors talking to their patients about it?
In Mitton’s opinion, they’re not.
“I recently had a conversation with my doctor, who I’ve been seeing for 7 years, where I asked him why he’s never asked me whether I’ve had an HIV test. He said that they never ask anyone unless the patient specifically asks for it.”
Mitton theorizes that this has something to do with the in-and-out nature of today’s doctor appointments. He says that because Florida law requires pre- and post-test counseling, there’s simply not time for HIV testing in an 8-minute-long appointment.
“We really can’t do this on our own, we need doctors to help us,” says Gomes, who, along with her team of HIV counselors, give the bulk of the HIV tests given within Collier County each year.
But they don’t just need the doctors’ help. Gomes also says that finding support in the community for bringing HIV back into the public psyche has been harder than expected.
Both Lee and Collier counties have contracted with mobile HIV testing vans from Fort Lauderdale, but it turns out that finding places for the vans to park is not as easy as either county had imagined it would be.
“For black HIV day, we had a harder time placing the van than we thought we would,” says Mitton. “We called some of the business in traditionally black areas and a lot of them said, ‘I don’t really want that van parked in front of my place.’ We actually ended up parking it in a city park in Fort Myers. Ultimately, it wasn’t that hard but the first couple of places we asked said ‘ewww.’”
It’s the same situation when Gomes wants to try and place posters and condoms in bars, even traditionally gay bars. Often the bar owners will say that they understand and appreciate what the Health Department is doing, but they just don’t want their establishment associated with it.
Gomes and Proenza both say that trying to gain visibility in front of the MSM, which stands for men having sex with men, population is one of their main challenges. But it’s not their only challenge. According to the 2011 HIV Surveillance Report, a document released each year by the Collier County Health Department, there are a few surprising trouble spots in HIV prevention that push beyond just the MSM population.
One of these is the population in Immokalee. According to the Health Department’s report, though this area of Collier County represents only 7.5 percent of the county’s population, 40 percent of the county’s cumulative HIV/AIDS reported cases are in Immokalee.
Another area of concern for Collier County is the spread of HIV/AIDS among those over 50. According to data from ICAN, in Florida, roughly 25 percent of new HIV infections each year are in people over 50.
“People over 50 is the fastest growing STD demo in the state,” says Mitton. “People think they can pop a blue pill and because she’s post-menopausal that they have nothing to worry about. If they smell nice, drive a Mercedes and live in a gated community, people think they must be ‘clean.’ It doesn’t work like that.”
Numbers from the Collier County Health Department substantiate this trend. From 2006 through 2010, 73 new cases of HIV were diagnosed in people over 50. Those 73 cases made up 24 percent of all the new cases diagnosed in the county. And, that number is likely lower than it should be. People 50 and over tend to be some of the least likely to get tested, often having the perception that HIV is a young man’s disease and blaming symptoms of AIDS on the aches and pains of aging. Furthermore, doctors are often uncomfortable suggesting an HIV test to patients over 50.
HIV in people over 50 is such a growing trend that the ICAN office in Collier County is launching a Graying Of AIDS program. This special program will travel around the county doing presentations specifically aimed at reaching those over 50 years of age.
In Lee County, things are a little different. One of the biggest HIV trouble areas in the county is in the black community.
Nationally, HIV is the leading cause of death for 25- to 44-year-old blacks, and in Lee County, blacks make up for a disproportionate amount of new HIV cases. According to Mitton, “In Lee County one out of every 52 blacks is infected with HIV, though that’s lower than in the state, where it’s one out of every 44. But we’re still not good, especially because if you’re black or Hispanic it’s proven that you will have a shorter lifespan with HIV.”
The reason for this, in Mitton’s view, is that Hispanics and blacks tend to have less access to health care, and are therefore less likely to catch their infection early.
Again, everything comes back to early detection. It comes back to the importance of being tested. It comes back to the brightly lit testing lab in the health department with its biohazard needle collection box and bottles of hand sanitizer. It comes back to the tiny drops of blood the HIV counselor coaxes from your finger and the 20 minutes of waiting. Waiting and waiting and waiting.
And it comes back to the fact that not enough people are performing this ritual on a regular basis. According to Proenza, possibly as many as one quarter of the people who have HIV don’t know they have it. And, in general, they’re the ones spreading the disease, not because they’re malicious or evil, but because they’re unaware of their condition. Stopping the spread of HIV hinges on more people getting tested. Period.
Ultimately, it comes back to the fact that it’s important to know your status, and that knowing is certainly worth the wait.