More on HIV Exceptionalism

Thomas Frieden and colleagues from the New York City Dept. of Health and Hygeine, in the Dec. 1 NEJM, discuss ways in which our approaches to the HIV epidemic differ from our responses to other transmissible diseases. To some extent, I think, they exaggerate these differences, but it is worth having this discussion.

In the case of most reportable diseases -- and there are a lot of them, from Amoebiasis to Yersiniosis (plague), including embarassing ones like syphilis and gonorrhea -- laboratory directors and health care providers are required to report to the public health authorities information including the name, address and telephone number of the infected person. (And note -- this is an exception to the HIPAA privacy regulations. These reports are handled confidentially, but they do go to state and local authorities.) In the case of HIV, most jurisdictions do not have name-based reporting, although some states have introduced it. Here is one state's set of reportable diseases and reporting forms.

Also, for many common conditions for which inexpensive screening tests are available, people are routinely screened in doctor's offices. Not so HIV, for which in most cases an elaborate counseling regimen is required to go with testing. Then there is partner notification -- if you are diagnosed with an STD, the local public health authorities will ask you for information about your sexual partners. A person called a disease intervention specialist will then contact them, and inform them that they may have been exposed to what we used to call a "social disease," and offer them testing and treatment. In the case of HIV, that happens inconsistently, depending on the jurisdiction.

There is also less systematic monitoring of whether people with HIV receive treatment than in the case of some other diseases of special concern; a more patchwork and inconsistent system of case management; and less systematic monitoring of the development of treatment resistant strains of the virus.

These differences principally arise from the highly stigmatized nature of HIV infection, particularly early in the epidemic, when there was also no effective treatment available. There were entirely legitimate concerns that anything less than absolute confidentiality would discourage people from getting tested; while at the same time, the direct benefit to the individual of knowing his or her HIV status was questionable. Today, although there is no cure for HIV, there are treatments that can be quite effective in most cases at slowing progression of the disease and giving people many years of productive life. At the same time, the stigma associated with HIV is much less, at least in large parts of the country. These developments suggest that the public health benefits of name based reporting, partner notification, and monitoring of treatment in individual cases as well as at a population level may now outweigh some of the earlier privacy concerns.

I have reservations about this argument. However much we may like to believe that we are now more enlightened, as a society, about HIV, for many people at risk for the disease, stigma is still a huge worry. I know many people who have not been able to disclose their HIV status to close family members. People are shunned and abused in prison because they are HIV positive, and may lose employment or suffer other harms. Many addicts and prostitutes do not visit doctors offices; some people who do see a doctor regularly might not want their doctor to know about their HIV risk behaviors. That's not desirable, but it's reality. Community based testing programs are still necessary, and being able to at least offer confidential testing is still desirable in many cases. With confidential testing, must come counseling, for various reasons which don't fit in a blog posting.

I do support universal availability of voluntary partner notification; case managment, without the overlap, duplication and gaps that currently exist (maybe more on this later); and follow-up monitoring of entry into treatment. The latter can be accomplished within a confidential reporting system by making the testing agency responsible for it, although it would eliminate the option of anonymous testing, which still exists in some jurisdictions. (Confidential testing means no reporting of identifying information to the authorities; anonymous testing means the testers don't even have identifying information.) But these issues require discussion by all the people affected -- people with HIV, people at risk for HIV, counseling and testing providers, HIV service organizations, public health authorities, citizens -- not just an essay by authorities in a medical journal.

Then there are the questions of condom promotion and needle exchange, where the fracture is along entirely different lines. More on that later also.