My recent speech about the history of the Denver Principles has prompted some interesting responses, including one from activist Robin Webb from Brave New Day, a peer-driven HIV survivor organization in Mississippi. Robin’s email vividly conveys the disaster that is Mississippi’s response to the epidemic. 

I bolded a few of the especially salient points, but the one that is especially galling is that the state requires people who test positive to sign a statement saying they agree not to get pregnant or not to get anyone else pregnant. 

This can’t possibly be legal, but of course the law so often has little to do with how people with HIV are treated.  Here is Robin’s report:

"I hope you will indulge me while I air some of our Mississippi laundry:

1.  Since the earliest days of AIDS surveillance, and still to this very day, the State of Mississippi -- in its process of mandatory HIV surveillance -- harasses people to the point of alienating them from HIV care.  It tacks a notice on your residential door, saying you must report to the Health Department tomorrow morning or there will be a warrant issued for your arrest, and a quarantine order.  Officials from the State (called Disease Intervention Specialists) have shown up at workplaces, even at people’s parent’s home, telling them, “your son has HIV, where can we find him.”  We have collected dozens of horror stories where the State takes on an intimidating, strong-arm sort of tone.  HIV+ people end up angry, intimidated, terrified, depressed, all that.  People are terrified to get tested in Mississippi.  Testing positive itself is treated like a felony.  In the past year, I have counseled six people that found out, for the first time, they had been exposed to HIV by way of landing in the hospital with pneumocystis pneumonia.

2.  At the end of this interview, the State requires individuals to sign a list of “no-nos.”  By signing this document, if you violate anything on the list, you are violating an order from the Health Department, punishable by jail or quarantine.  One of the items on the list reads “I agree to not get pregnant or to get anyone pregnant.”  Even when we do get this horrendous message about HIV survivors reproducing changed, it shouldn’t just be swept under the rug -- think of the damage it has already done.

3.  I fought to get our Community Planning Group (CDC Prevention) to put a box for someone to self-identify as HIV+ on the application form for membership, if they so choose, in order for the CPG to have a reasonable number of HIV+ folks as members.  After literally years of belaboring the issue, finally succeeded with that, but now the Health Department has taken it upon itself to not disclose how many people on the CPG are HIV+, saying “just trust us,” there are plenty.  I happen to know out of the 25 members, only 3 are self-identified as HIV+, but worse of course, is the arrogance and absence of transparency.

4.  Forget about the ASOs here -- they close their doors -- not to mention their boards -- to HIV+ folks (not our organization, of course, which follows the Housing Works model, but we are a tiny, all volunteer grassroots organization.)

5.  I describe our HIV survivor community as “pre-empowered.”  Most -- I’m talking 90% -- never had an empowerment experience or know of its history in AIDS activism.  Stigma is rampant and lethal here, particular the stigma people carry within themselves.  The only reality they know around HIV is the environment in the above scenarios; most don’t realize there could be a better way...

I could go on with a half dozen other hair-raiser scenarios, but I won’t.  I believe we must do something LOUD about Hivil Rights.  There are unbelievable civil rights and constitutional rights violations, the above is only the tip of the iceberg.  I am deeply heartbroken we don’t have a national HIV and/or AIDS survivors organization that can put pressure on an out-of-control AIDS, Inc world and big brother type governments.  So often, I feel lonesome, even powerless.  (More often, however, I don’t)"

Kudos to Robin and his colleagues for their great work.

So much of our community’s discourse on AIDS revolves around agendas set or driven by the government, pharma and big-city AIDS service organizations.  We would all serve people with HIV better, and contribute more to preventing new infections, by paying closer attention to what is happening in places like Mississippi.