A recent study says that many HIV positive patients in the US and Canada are getting diagnosed too late for modern treatments to be fully effective. The US News writes:
The public health implications of our findings are clear,” study author Dr. Richard Moore, from the Johns Hopkins University School of Medicine in Baltimore, said in a news release. “Delayed diagnosis reduces survival, and individuals enter into HIV care with lower CD4 counts than the guidelines for [initiating] antiretroviral therapy.” A delay in getting treatment not only increases the chance that the disease will progress, but boosts the risk of transmission, he added.
This study has got me thinking about routine HIV testing, a subject I mulled over quite often while writing my undergrad senior thesis on HIV/AIDS public health policy. The CDC recommended routine HIV testing for all Americans in 2006, but because of the complicated history of the AIDS epidemic and resulting HIV public health policy in the U.S. we are still hesitant to take that step. Here’s some background.
Historically, public health existed in order to protect the public from the sick. Traditionally, Americans have understood that in the case of certain easily transmitted diseases, the health and safety of the general public outweigh an infected person’s individual rights. Authoritarian strategies like mandatory testing, name reporting, contact tracing, and even quarantine are old hat for many STIs and other communicable diseases like TB. There’s a reason the CDC is called the Center for Disease Control; they don’t mess around.
In reality, most of us do not experience these more extreme measures of control in our daily lives. Most of the time, you don’t need to pass a syphilis test to obtain a marriage license and hospitals and clinics often offer confidential or anonymous STI testing. Still, a virulent strain of TB can get you landed in quarantine.
The only communicable disease that is legally protected from these types of authoritarian public health controls is HIV/AIDS. Instead of existing to protect the public from the infected at any cost, HIV/AIDS public health law is designed to protect the infected from discrimination. This is largely due to it’s unique history as a disease that suddenly appeared in the 1980s and decimated an already marginalized and stigmatized group (gay men).
A tactic such as mandatory testing would have been a huge threat to the gay community, since at that time being HIV positive was an indicator that one was gay, and it was not quite as safe to be “out” as a gay man in the 1980s. (Not that it is always safe now, but I would argue that general tolerance and acceptance has dramatically improved.) But even beyond the gay issue, people were scared of HIV/AIDS because so much about it was yet unknown. Most did not understand how it was transmitted, and were afraid to come in contact with those who had it. They did not want them in their offices, working in restaurants, or going to school with their children. Hello, discrimination. There is also a lot more to it than that, including the aversion to sick people thanks to the idea that morality and illness are somehow connected (check out Susan Sontag’s Illness as Metaphor). But I digress…
Thanks to the efforts of gay rights leaders, activists and politicians of the 1980s, mandatory HIV testing is illegal, confidentiality of one’s HIV status is paramount, and public health officials cannot separate folks with HIV from the rest of society in any way. This was groundbreaking legislation and policy, and at the time completely necessary. But is it still necessary?
In the late 1990s and early 2000s, the strong emphasis on confidentiality and individual rights began to relax. This was perhaps natural as the fury of the AIDS epidemic of the 1980s began to die down as well. Still, some important changes began to occur. First, a new drug that was effective in reducing the transmission from mother to newborn led the CDC and others to endorse HIV screening for pregnant women, and many states began doing so. And the measures were pretty effective in helping reduce the rates HIV transmission to infants.
In an article called “Applying Public Health Principles to the HIV Epidemic.” from the New England Journal of Medicine (2005), Thomas Friedman, the then Health Commissioner of New York, wrote:
Although stigma and discrimination on the basis of sexual orientation continue, advocacy has resulted in substantial progress, including antidiscrimination statutes in many states and increasing numbers of jurisdictions that recognize the rights of domestic partners. The world has changed in the past 25 years, and approaches to HIV prevention must also change.
That article recommended a switch to routine HIV testing in addition to a re-commitment to prevention methods, such as condoms, sex education, and needle exchange programs. Routine testing would mean that your yearly physical would also include an HIV test. You would of course be able to opt out, but the idea is that it would be treated as a common, routine, health practice.
By 2005, the CDC was recommending routine testing for high-risk groups and individuals. In 2006, the CDC issued a recommendation for the very first time that we begin routine HIV testing for all Americans. Considering the history of HIV public health policy, that was kindof a big deal. But as you can see, it didn’t really happen.
HIV testing is still a completely voluntary thing, and while some of us are good about getting tested regularly, most Americans get tested once or twice in their lives, or not at all. And this is part of the problem identified by this new study. Is routine testing the solution to this problem?
Routine testing would help those diagnosed receive treatment early enough to be most effective. It could also help prevent unknowing transmission. There is a chance it could even help reduce stigma through normalization. But are we ready?
What do you think?
If you are by any chance a public health nerd and would like to read my undergrad senior thesis: “Is AIDS Special? A New Paradigm of Public Health and Individual Rights,” you can download it here. I warn you, it’s long. Just don’t plagiarize me, bro.