1.17.00
In regard to the January 13 editorial, "Prisons: Hard time for those with HIV" [St. Louis Post Dispatch], I found it interesting that the Post Dispatch writer did not mention that the AIDS rate in prison in the US is 6 times the national rate, according to a prison study from 1994-96 by researchers at the Centers for Disease Control and Prevention (published in the Dec. 3, 1999 issue of AIDS). They also found that female inmates had AIDS rates that were 23 times the national rate for AIDS among women.
Just 40 years ago, before the advent of effective anti-tuberculosis drugs, people with tuberculosis were both quarantined at home and in institutions. This restriction on their freedom was properly understood as an appropriate public health measure taken for the common good.
Today we are faced with a global HIV pandemic which threatens nearly every society.The person infected with the human immuno-virus will be fully infectious for the rest of his life even though he may not have symptoms. Without symptoms, he probably will not know he is infected, possibly for years; every time he has sex or has a bleeding incident or shares IV drug equipment there is a possibility he is infecting other members of the community. He could be considered a "stealth killer".
UNAIDS reports that there were 5.6million new infections worldwide in 1999 bringing the global total to 33.6 million.
When the Post complains that prisoners with HIV in Alabama had restrictions placed on their mobility within the prison, perhaps there were good reasons for doing so. And most likely it was being done for the good of the uninfected prison population. That used to be considered good public health policy.
--Jocelyn Johnson, RN Member, BeyondAIDS
Dear Dr. Hattis --
I hope my letter was helpful. I am very active with Women Lawyers of Ventura County (past president for the last two years). It is very discouraging that so many intelligent women fail to appreciate the danger of HIV. I have had a number of heated debates with strong "feminist" lawyers who feel that privacy is more important than safety.
It's my hunch -- most FEMALE legislators fought hard to achieve power & autonomy. Very few have experienced catastrophic illness. Women lawyers tend to have a great deal of empathy for oppressed persons. (HIV patients). Women lawyers tend to appreciate problems of stigma & powerlessness better than health issues. The issue of Partner Notification is probably too abstract for them.
The question is -- What is the most important policy for California citizens? -- Are we going to have maximum privacy for infected patients at the expense of innocent (but sexually active persons) (also health care workers, etc.) PRIVACY v. SAFETY -- it's impossible to have the best of both worlds. We are dealing with extremely INTIMATE behavior. How do we teach people to be responsible?
If we develop a system that "under-estimates" HIV risk, we will create a "legislative monster." Citizens will have the misguided notion that the State is protecting them -- when in fact it is not. If they pass a PRIVACY bill -- it should be called just that. If they pass a HEALTH bill -- it should be constantly scrutinized for it's FAILURE TO REPORT HIV.
I have heard arguments that Public Health officials cannot be trusted to maintain confidentiality with a name-based system. I cannot understand the roots of this argument. If I think of something -- I'll send you another e-mail.
In order to really persuade FEMALE SENATORS -- I think you need to emphasize the DICHOTOMY between privacy and safety. For example -- It's not a fun experience to go through labor & delivery at a hospital where a woman is confronted with strangers, machines, sterile delivery room, etc. But no one could argue -- it's worth giving up a certain amount of PRIVACY to enjoy a certain amount of SAFETY during childbirth. Once in awhile -- even the most independant woman must abandon expectations of AUTONOMY & PRIDE.
Yes there's a cost for Partner Notification. But isn't it worth it?
Perhaps you can also help the Senators focus on dangers to young women. What about their sisters & daughters? How many young women are betrayed by their boyfriends?? This isn't a very pleasant subject to think about -- or relate to.
I am friends with a significant number of women with political ambition. The risk of HIV exposure is not a reality to them. Most went through puberty many, many years ago. They don't recall the "negotiating process" with young men with raging testosterone --- in the back seat of a car. I have distant memories of walking home, rather than agree to the boyfriend's sexual demands. What if the young man also fails to disclose high-risk behavior? Should we dispense condoms to all 7th grade children?
As physicians -- you & Cary have an opportunity to give GRAPHIC details about biologic fluids & sexual behaviors -- especially among young people.. Please don't mince words. Don't be shy -- the Senators will get over it. Just imagine that Honorable FEMALE SENATOR is sitting in your office, with her 15-year-old daughter. Imagine further that MOM really suspects that her daughter is sexually active, but is not talking. For a very short time, you will have a captive audience.
GOOD LUCK!!! Regards, Karen Darnall
To: StopHIV@aol.com
Date: Tue, 12 Jan 1999 08:00:46 +0200
Subject: Re: Beyond AIDS is growing!
All the best of luck. Being in South Africa as part of the African continent where the epidemic is claiming its biggest toll makes HIV so more relevant. The absolute tragedy of the African continent is that the disease is spread almost solely be heterosexual contact, but due to the stigmatisation and human rights approach copied from the first world, the epidemic has spread unabated and silently. No testing, no reporting, no informing of spouses and a general secrecy have led to this situation of between 15 to 30% of all adults infected with the virus.
You are fortunate that public health intervention is gaining momentum in the States. In South Africa we are battling to move out of the grip of the "AIDS Mafia" and the overriding principle of "privacy" which your letter to the CDC captured so appropriately.
I will be following your progress closely.
Regards
Lettie La Grange
Health Adviser Chamber of Mines of South
Africa
To: hivmail@cdc.gov
Cc: stopHIV@aol.com
Date: Fri, 8 Jan 1999 20:32:30 -0500
Subject: MANDATORY HIV
REPORTING
Open E-mail to the CDC, I am Lisa Mai Shoemaker, aka patient "E" according to your files. I was infected over 10 years ago by the infamous Dr. David Acer in Jensen Beach, Florida.
I am writing to you today to PLEASE SUPPORT and STOP THE INSANITY of not having Mandatory HIV/AIDS reporting! Where is our common sence? Have we all been totally buffaloed into beleiving our rights would be utterly squandered?
BULL---T. Aliases and numbers have been used since day one and have proved over and over again that they DO NOT WORK and our numbers are not accurate. Cryptic codes and unique identifiers simply are prolonging and allowing the disease to progress and gain momentum over all of us. This will include many of you and/or your loved ones also. Why are we continuing to give this disease such a future? Why can't we all work together in making it a thing of the past?
In September of 1998 I testified in front of Congress FOR Mandatory HIV/AIDS reporting and Partner Notification, I wish you would take this stand with me. Sincerely, Lisa Mai Shoemaker E-mail address: LSOH326@aol.com fax:616-326-5974
To: hivmail@cdc.gov
CC: StopHIV@aol.com
Subject: HIV it
Technical Information and Communications
Branch
Mailstop E-49
Division of HIV/AIDS Prevention National
Center for HIV, STD, and TB Prevention
CDC Atlanta, GA 30333
Thirty-some years ago this month I was a student nurse at a tuberculosis hospital in Indiana. Those were the days when individuals with communicable diseases were quarantined/confined for the sake of the common good.
At that time public health policy dictated that the health needs of the community overruled the rights of the individual person. Today that policy has been stood on its head when it comes to the human immuno-virus.
Confidential name reporting in order to efficiently and effectively trace contacts and notify sexual partners is an essential element in putting a stop to transmission of HIV. To allow names of people with full blown AIDS to be reported to local health officials but not allow those with the deadly infectious precursor condition is simply mind-boggling.
As a health care professional I am strongly urging you to put into place policies needed to assist states in instituting rigorous laws that will once again safeguard the entire community. One of those policies must be confidential name reporting.
Jocelyn Johnson, RN 7327 Woods Road Hillsboro, MO 63050
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