HIV has become a silent and invisible epidemic in the United States. Statistics suggest that more than 250,000 people—at least enough to fill five football stadiums—are walking around America with HIV and don’t know it. All of them unaware that the virus is inflicting damage daily to their immune systems, half don’t discover that they’re HIV positive until they’ve already progressed to AIDS and are possibly suffering from serious illness. And in the years between the time they are infected and when they eventually get tested, they’re unwittingly passing HIV on to others through unprotected sex or sharing needles. Research suggests that it is predominantly those who are unaware of their infection who keep the epidemic raging in urban hot spots and light new fires in rural settings throughout the United States.
Finding those who are unaware of their HIV status has become an understandable obsession for the U.S. Centers for Disease Control and Prevention (CDC) as well as for community advocates. Without going so far as to call traditional HIV testing campaigns—efforts to identify and screen only high-risk communities—a total failure, the CDC did recommend last year that the medical community begin casting a wide and indiscriminate net and start testing everyone between 13 and 64 years of age in all medical settings regardless of a person’s perceived risk for HIV.
While many experts and advocates agree with the goal of the CDC’s new recommendations, the debate raging from community meetings to the floors of state legislature is how to implement them. The devil, as they say, is in the details and that’s where some AIDS activists stand in opposition to the CDC. They argue that doing away with “informed consent” and checking everyone for HIV unless they specifically “opt out” of testing, as the CDC recommends, goes too far.
Even if these grievances are addressed, there is the obstacle of current state laws. Just last month, a study published in the Public Library of Science’s online journal PLoS ONE revealed that a majority of states currently have statutes that could effectively keep the CDC’s recommendations for widespread, universal testing from being implemented as currently written.
And then there are financial concerns. Because local and federal officials will need to scramble to find the money to adopt the new routine testing—an expensive proposition requiring more time and resources from hospitals, doctors and AIDS service organizations—some activists worry that funds currently earmarked for testing and prevention programs for those at high risk for contracting HIV will be shortchanged.
Perhaps most troubling is the concern among some prevention activists that HIV-related services are already overtaxed and ill-prepared for a deluge of additional cases. In effect, the new group flushed out by routine testing may find themselves without the education, support and health care they’ll need to stay healthy and change their high-risk behaviors. Whether such concerns are justified, or whether they are merely an impediment to a hopeful new prevention strategy, is a question that will only be answered the hard way.
The CDC’s recommendations regarding HIV testing and counseling didn’t drastically change over night. In fact, according to Bernard Branson, MD, the associate director for laboratory diagnostics at the CDC’s division of HIV/AIDS prevention, “[routine] HIV testing, in particular in urban settings and hospitals with a higher burden of AIDS patients, [has] been recommended for over 15 years. The problem is people didn’t do it.”
Recommendations to move from such targeted settings to broader coverage were part of a progressive shift that began in the late 1990s with a call to implement universal HIV testing of all pregnant women. By 2004, when the CDC began working on its new recommendations, it was obvious that the call for universal testing of pregnant women had generally been a success: The mother-to-child HIV transmission rate since the late ’90s has dropped to below 1 percent in most U.S. cities, and without undue hardship for most of the women who were tested. This success was a primary driver of the CDC’s new recommendations, which were published in September 2006.
But the CDC didn’t simply recommend that everyone, everywhere be tested—they also gave directions about how that testing should be carried out. And here’s where laws enacted in the 1980s and ’90s to protect people from stigma and discrimination get in the way of the CDC’s new mandate.
Historically, many states have required that people give written consent stating that they’ve received information about HIV and are willing to be tested. The CDC’s new guidelines eliminate the notion of written consent, suggesting instead that health care providers simply tell patients that they will be tested unless they object. Should a patient “opt out” verbally, declining to be tested for HIV, the CDC recommends that the doctor or person administering the test note the patient’s decision in his or her medical records.
Some states also have laws directing that everyone tested for HIV receive extensive pretest education and risk assessments. The CDC, in contrast, recommends a streamlined approach whereby a person receives just enough information about HIV and the test to be able to make a reasonably informed decision about whether or not to be tested. Many activists feel that by doing away with more comprehensive pre- and posttest counseling, patients may not only be ill-prepared for a test result, they also miss out on an opportunity to learn information about protecting themselves or their partners.
Those who test negative may be particularly imperiled by this lack of risk-reduction counseling, falsely lulled by a negative test result into believing that their behavior, whether high or low risk, isn’t harmful. Walt Senterfitt, an epidemiologist and chairman of the board of the Community HIV/AIDS Mobilization Project (CHAMP), fears that ignorance will encourage these people to engage in high-risk behavior, at least until, he says, “the bullet happens to be in the chamber of the roulette pistol when they pull the trigger.”
According to Leslie Wolf, MPH, of the center for AIDS prevention studies at the University of California in San Francisco, and the principal author of the article in PloS ONE, “14 states require written informed consent and 24 require disclosure of specific information about HIV during pretest counseling and/or the informed consent process.”
In some states, however, those laws are already being changed to allow for compliance with the CDC’s recommendations. According to Branson, both California and Illinois recently changed their written consent regulations, as have six other states. Other states, like Massachusetts, have not. According to Senterfitt, “[Massachusetts] is one place that’s holding firm on the grounds—which I personally agree with—that the CDC has not proven that consent is the barrier to implementation of routine testing.”
Branson agrees that routine testing could still be implemented in states that continue to require written consent. He points to New York as an example, saying that a number of New York hospitals have begun to implement routine testing despite the need to obtain such written consent.
Even if activists and the CDC resolve differences about consent, Senterfitt still worries that people who test positive in certain settings—say in an emergency room—won’t be linked to care, treatment and other kinds of support. He says that linkage to treatment is, “not [possible] without special planning, extra resources and insurance that the actual treatment includes not just medical treatment, but psychosocial support, legal support and necessary case management.”
Senterfitt is also concerned that people testing positive in an emergency room or other medical settings—as opposed to those being tested at an AIDS service organization or an infectious disease clinic—will encounter providers with little knowledge about HIV and available resources. There is concern that non-HIV specialists will, “just give [patients] a piece of paper with a referral and say, ‘Oh yeah, you can call these places and make an appointment.’”
In the end, both expanding routine testing and ensuring that people who test positive are successfully linked to care will cost money—more money than is currently allocated for either. “I think that we’re in a transition phase where a lot of people are obviously concerned about how exactly [routine testing and the potential subsequent need for additional resources] will be paid for, [and there is uncertainty about] what sources of reimbursement will be out there,” says Branson.
Senterfitt believes that existing prevention efforts are going to suffer as routine testing becomes more widely adopted. He says, “What we oppose is putting all [of] one’s eggs into the basket of routine testing, which is what we feel like, despite what [the CDC] will say, is the thrust of the CDC’s new initiative.” Again, the fear is that a more widespread approach will fail to identify those with high likelihood of HIV infection, who don’t generally access traditional medical settings.
Branson, at least as far as the CDC is concerned, heartily disagrees. He counters, “…we haven’t abandoned our earlier strategy of specific targeted [testing] activities in [high-risk] communities. The new recommendations are…in addition to our current activities.” He does concede, however, that some states may decide to shift funds and says that “some of those states are considering changes in the scope of their programs.”
Senterfitt argues that such shifts could result in fewer people with HIV being found, at least among those who are least likely to utilize emergency or routine health care—such as young men of color who have sex with men. Senterfitt says, “I did a convenience sample of 100 black gay men and less than 5 percent said that they had accessed a medical care provider…in the past three years.”
Real world experience with ramping up routine HIV testing, though, has shown that it can be implemented and helps identify some people with HIV. In the December 1 issue of the Journal of Acquired Immune Deficiency Syndromes, researchers reported on their experience offering rapid testing in a Washington, DC, emergency department. Of 2,476 people who were tested, 26 had a preliminary HIV positive result from the rapid test. Four were confirmed negative by the standard blood test, and nine were confirmed positive, of whom eight were linked to follow-up care. Thirteen people, however, were lost to follow-up—they never returned for confirmatory testing and thus might not have been linked to needed HIV care.
Also, as much as 5 percent of the population in Washington, DC, are estimated to be HIV positive, yet in this study, just over 1 percent of those tested had a preliminary HIV-positive result. So while some people were identified who hadn’t been reached by previous community-based testing efforts, the proportion found is far less than 5 percent.
Yet the CDC feels that routine testing is our best bet for finding the people who are positive but don’t know it. Branson says, “All the studies have shown that if you know where all the HIV-infected persons were and only tested there, it will clearly be more cost effective, but we don’t know where everyone is.”
For activists with lingering concerns regarding the CDC’s new testing recommendations, it may be too late to slow their implementation. The train, as it were, has already left the station. Branson says, “I am pretty surprised at how fast people have moved in the direction of adopting or expanding some of their programs,” citing as a case in point the new pot of money announced by the CDC this month to roll out routine testing in medical settings in the African-American community.
Senterfitt and the prevention activists at CHAMP aren’t directly opposing this rapid expansion, but they are watching closely to make sure that when infected people are identified, they are not lost because of poor linkages to care. He says, “We believe that it is the moral and public health obligation of all of us to use any reasonable tool to increase the number of people who actually learn of their status, so long as they learn it in way that’s likely to lead to their accessing care and services.”