So What Do You Do Exactly? HIV Testing Edition

And we’re back with the latest entry in my jobs series, So What Do You Do Exactly? This is Clara Bertozzi-Villa. She works on a federally funded project to expand routine HIV testing in Chicago. Her work includes collecting and analyzing HIV testing data from participating sites, and then following the cases of patients with positive tests that receive care at her clinic. I would never play favorites, but if I did, this would be win “Most Informative SWDYDE”:

What’s your actual job title? HIV Testing and Linkage to Care Coordinator

What would your title be if it actually described what you do? That’s actually pretty accurate!

What’s a sample day like?  On any given day, I am usually working on some combination of data management, clinical follow-up, and new projects.

In the morning I catch up on importing data from collaborating testing sites into our database or analyzing data for a poster or report. I’m in clinic about one afternoon a week with patients who test positive and are receiving care at the University of Chicago Infectious Diseases clinic. I tend to meet them along with the physician and social worker and then spend some time visiting with them myself.

Let’s talk about the state of HIV these days in the US. I feel like I haven’t heard it in the news since Magic Johnson! It’s funny that you mention Magic Johnson—he was just on The Daily Show promoting the OraQuick rapid test which can now be taken at home. He’s a great spokesman for testing, prevention, and stigma reduction, but younger generations probably aren’t so familiar with his story (he made his status public in 1991).

I’m happy to say that a lot has changed since the early 90s, however, the annual number of new infections has stayed pretty consistent at around 50,000 per year. These days, the rate of new infections is rising fastest in young black gay men (or, in the lingo, men who have sex with men—MSM) and black women.

Chicago and DC are good examples of how different the epidemic can be even within urban areas (this has a lot to do with how racially and socioeconomically segregated they both are). Chicago, for example has LGBT neighborhoods where HIV prevalence is higher than the national average and concentrated in white MSM; and neighborhoods (mostly on the South Side) where the epidemic is growing fastest in black men and women. DC has an HIV prevalence of 3%—this may sound small, but it rivals the prevalence of several countries in Sub-Saharan Africa.

So what’s the goal of your program? The goal of the program is to implement routine HIV testing in health care settings for everyone aged 13-64. An estimated 260,000 HIV positive people (out of 1.2 million nationally) don’t know that they are infected. This group accounts for at least 50 percent of transmission and they often don’t find out their status until they are already sick enough to receive an AIDS diagnosis.

From a public health standpoint, testing everyone is both cost-effective and necessary to slow the epidemic. Our job is to find and diagnose people that wouldn’t otherwise get a test and then make sure they receive care. In the HIV/AIDS world, “linkage to care” means that the patient has returned to a health care setting after testing positive to have a CD4 T cell count and a viral load drawn. Successful “retention in care” means that the patient has been to the clinic repeatedly since testing positive.

How’s it going and what are the biggest obstacles? So far our program is doing quite well—testing has increased significantly in almost all of our sites since the project began, and the nurses in one of our emergency rooms in particular are playing a huge role in maintaining momentum and high testing numbers. The hardest part is getting institutions to play along for reasons ranging from concerns about insurance reimbursement to insufficient staff education, not to mention that providers can be reluctant to institute routine testing programs when they don’t feel like the state of the epidemic is severe enough to warrant the inconvenience.

If you were President, is there one HIV policy that you think would make the most difference in the US? I think that routine testing really is the way to go, but I would completely eliminate the consent process and include it within the standard blood panel of people who do not have a test in their records. I think that part of the stigma around HIV testing survives because people still feel like it’s something they have to go out of their way to get or ask for in some sexual health-specific setting. If everyone receives an HIV test as part of a wellness visit or ER admission, then we’re closer to achieving nationwide testing and to reducing the burden and stress of the test on both the individual and the provider.

Look, in a perfect world, we would have a vaccine or cure, exceptional sex ed programs that encourage condom use, and clean needle programs for injection drug users. Working with the epidemic as it is today, I think the best thing to do is to find all new infections and educate those who test positive (or those at high risk who seek testing) about how to protect themselves and others. This is actually pretty close to the National HIV/AIDS Strategy, except that we are not allowed to perform an HIV test without informing the patient that they will be tested.

What are your patients like? I do my best to meet patients on their first visit to clinic, and then follow up with them at their subsequent appointments. Since I started working a few months ago, the new patients I’ve met are just starting to begin taking antiretroviral therapy.

No one that I’ve met so far has viewed it as a death sentence, and in the US, it need not be. People with HIV who are adherent to their meds have a life expectancy that is barely below the national average. In fact, physicians now have to think seriously about geriatric HIV care. Some people have been in successful treatment for so long that, as they age, HIV is no longer their major health concern.

How do you maintain an arm’s length from such emotionally fraught work? The extent to which a visit upsets me depends entirely on the patient. Sometimes I walk away from clinic feeling really optimistic because a client has taken his diagnosis incredibly well, and other times I’ve been angry and sad because the patient just realized she was infected by (someone she thought was) her monogamous partner. Situations like the latter are especially difficult because the patients are not putting themselves at risk in ways that we usually define it and are not at all prepared for the diagnosis—someone that they trusted lied to them, and now they have a chronic, lifelong illness. It’s daunting, and I cope with it by covering myself with latex every time I leave the house.

In all seriousness, though, I have been interested in the epidemic for many years at every possible level—virology, immunology, sociology, epidemiology, etc.—but this has been my most significant exposure to people living with the virus. It’s humbling and grounding and reminds me why the global response is so massive and so important.

Do you think we’re close to a cure? Is there a cure? Or will HIV become the new chlamydia… gross but only annoying? I could talk all day about the fascinating ways the virus makes it really difficult to design a vaccine or cure, but no, I don’t think we’re especially close. And until we find a cure, HIV will never be as simple to treat as STIs like chlamydia and syphilis (let’s not even talk about multi-drug resistant gonorrhea). There’s no way to clear the virus from the body—even when your viral load is below the limit of detection, you can’t stop taking medication or it will rebound.

The good news is that a large study (HPTN 052, if you’re curious) recently demonstrated that people with undetectable viral loads have a very low chance of passing on the virus to their sexual partners, lending a lot of support to the concept of treatment as a form of prevention (TFP). The trial was a groundbreaking affirmation of both TFP and the recommendation that treatment should be started immediately upon diagnosis. Science magazine named it the 2011 “Breakthrough of the Year”, which is kind of like “Sexiest Man Alive” except it’s way more awesome.

What would surprise us about modern HIV treatment/research, etc? Mother to child transmission of HIV is almost completely preventable. With no treatment, transmission occurs in about 25% of births. Because the placenta prevents infection in most cases, the transmission event is often the process of birth itself. Even if you don’t find out that the mother is pregnant until she is in labor, you can use antiretroviral therapy to reduce the risk of infection of the infant to less than 2%. Despite the highest prevalence rates in the country, no child has been born with HIV in Washington DC since 2009. So cool!

Male circumcision is an effective but somewhat contentious method of preventing acquisition—three large randomized controlled trials in Sub-Saharan Africa have shown that circumcised men are around 60% less likely to be infected than uncircumcised men during sex with an HIV positive woman. The WHO recommends male circumcision programs in countries with high HIV prevalence and where the epidemic is mostly heterosexual. Because protection is not absolute, circumcision must be used in conjunction with prevention and testing services, but a 60% reduction of risk is better than any vaccine we’ve come up with so far.

Want more information about Clara’s work? Email her at

Related Post: So What Do You Do Exactly? Social Work Edition.

Related Post: So What Do You Do Exactly? Think Tank Edition.



Filed under Chicago, Politics

2 responses to “So What Do You Do Exactly? HIV Testing Edition

  1. Pingback: So What Do You Do Exactly? Ski Edition | rosiesaysblog

  2. Pingback: Your Ex-Boyfriend is HIV Positive. How Do You Feel? | rosiesaysblog

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