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Author Topic: Harrassment from the Health Department  (Read 6412 times)

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Offline redbull

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Harrassment from the Health Department
« on: November 03, 2009, 03:21:13 PM »
Anyone experience this?.....

I tested poz back in may of 09....I finally got my partner to get tested.  He went to the health department here in Va where he lives.  I was against that but to each his own...

They called him after 3 weeks of waiting,  scheduled an appt to come out to his house.  Was very persistant on getting my name and info to contact me and others he had been with in the past.  They almost insisted on being involved in his care as far as finding a dr and etc and he finally put his foot down and said he would do that.  He had told me that they were very persistant and wanting to know so much information about everything. 

I told him I would return the call to this person only because he had given his word that he would pass on the information to me.  I talked to this person today on the phone and ended up laying their ass out.
They said they needed to send someone out to talk to me to continue this "investigation". 

I told them there is no investigation.  I already know of my status, I am seeking treatment from a dr.  I have insurance so there is no need for them to send anyone to speak to me.  I already had someone from the health dept talk to me at one of my visites at the IDC and there wasn't a problem.  She was very nice and didn't persue it any further. 

I told this person that I am seeking treament and that my partner is as well and anything other than that is none of their dam business.

I also said that this harrassment may be one reason that people dont get tested  and they are creating more negative stigma with this disease.  I pretty much told them to kiss my ass and to never contact me or my partner again.  We live 2 hours apart.  As I was hanging up on them I heard them say that they cannot promise that.

Who do these people think they are?  I could almost understand if I didnt have insurance and needed help paying for my treatment but I am not.  I have insurance,  I am paying for my medication and dr visits...as will my partner...it is none of their dam business...

Anyone else experience this type of degradation and invastion of privacy and harrassment?  What did you do about it?
If you wish to see the best in others, show the best of yourself.

5/20/09  tested poz
6/2/09  CD4-94    VL-380,000
8/09   Allergic reaction to bactrim
9/09/09  started Atripla
5/10    cd4 315  vl undetectable
3/11    cd4 400  undetectable
6/11.   Cd4 520. Undetectable
12/11. Cd4 450. Undetectable
6/12.   Cd4 600. UD
2/13.   Cd4 425. UD

Offline MarcoPoz

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Re: Harrassment from the Health Department
« Reply #1 on: November 03, 2009, 03:30:22 PM »
To answer some of your questions:  Yes--this does happen to others and yes--its a giant pain in the ass.

What can others do?---They can do EXACTLY what you did and be open, honest and stand their ground.

We need our health departments to remember that care is VOLUNTARY and based on OUR desire for it.

We also need to remember that partners deserve to know if they have been at-risk--but the jack-booted, get-a-name-and-address-at-all-cost-no-matter-what-the-client-says appraoch is archaic and detrimental to public health goals.  To often in Partner Services practices, we--the HIV positive person are seen as the 'vector' and the 'index' patient that all others need to be protected from.

In my opinion--this will only change when WE re-engage health departments in a meaingful way and demand respect.

When we gave our services over to the 'system' and went about our merry ways--we knew there may be a price to pay in the future.  This is an example of a bill coming due.

Offline onemoretime

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Re: Harrassment from the Health Department
« Reply #2 on: November 03, 2009, 03:34:05 PM »
i had the health department harassing me over a bacterial infection.   I yelled at them asking them where were they when i got hiv.  why didn't they call me then to make sure i was ok.
08/04 diag 490 cd4 vl 50,000
10/25/05 436 50,513 hvb 1.1 billion
12/13/05 truvada sustiva
02/16/06 742 und, hpb 63,000
04/27/06 740 und hpb 60,000
01/05/07 458 und hvb und
03/08   470 undetectable still on atripla. Non smoking (chantex)
08/08 cd4 550 undetectable hiv, Hep B UND. Atripla
06/09  cd4 444, vl undetectable testo 130
09/09/09 CD4 687 46% UND  Testo 213 started androgel
10/12/09 cd4 682 46% und testo 597
01/12/10 cd4 842 48% und testo 434
041010 cd4 693  53% testo 492
100410 cd4 568 48% testo 523
012711 cd4 523 hcv 56 testo 596
083011 cd4 280 Hcv/HIV und
042912 cd4 158 hcv /hiv und, was on hep c for 11 months. do have ssdi filed and getting LTD
061912 cd4 151, bactrum, hep c and hiv und
071712 cd4 287 52% HIV HCV und
112012 cd4 520

Offline skeebo1969

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Re: Harrassment from the Health Department
« Reply #3 on: November 03, 2009, 03:35:02 PM »
  I got the visit back in 2005.  The guy actually gave me some great advice on which ASO's to avoid due to poor care for the clients.  I didn't give them any info regarding who I had slept with.  I told them I would take care of that myself.
I despise the song Love is in the Air, you should too.

Offline David_CA

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Re: Harrassment from the Health Department
« Reply #4 on: November 03, 2009, 04:02:05 PM »
Hubby and I also had similar experiences with the Dept. of Health (State-run) about syphilis.  I never let them test me for HIV, as I'd already sent off a confidential mail-in test.  I did end up with an envelope taped to my front door addressed to me wit a Dept. of Health return address and a big red 'Confidential' stamped on it.  So much for privacy!  I had a couple of run-ins with them over the syphilis, but it was dealt with.  I'm glad that I didn't have my HIV test there or at the Health Dept.  I can only imagine how stressful that would have been.  I have good insurance and already had an appointment with an ID Dr, so I pretty much avoided them over the whole HIV thing.

We got in touch with our 'contacts' ourselves.  When it came to giving them names, I made up some for them.  'I don't remember' wasn't good enough.  I realize that they deal with a lot of different people and some of them are uncooperative, etc.  I do think that we deserved a chance to 'comply' with their demands before they got so heavy-handed.  I guess I liken it, in a way, to nurses.  Some, for example, do their job well and are compassionate despite the patient being in an unpleasant situation.  Others, like one I had when in the hospital (out of about 7 great ones) wear their asses on their shoulders and seem to enjoy the power that their position gives them. 

All in all, though, I'm glad they were as aggressive in getting my (and hubby's) names as they were.  If they hadn't, I wonder how many more people I might have infected before I tested.  I also wonder how long it would have been before I went to my Dr. when I was sick... with PCP pneumonia - a big-time killer of HIV+ folks. 
Black Friday 03-03-2006
03-23-06 CD4 359 @27.4% VL 75,938
06-01-06 CD4 462 @24.3% VL > 100,000
08-15-06 CD4 388 @22.8% VL >  "
10-21-06 CD4 285 @21.9% VL >  "
  Atripla started 12-01-2006
01-08-07 CD4 429 @26.8% VL 1872!
05-08-07 CD4 478 @28.1% VL 740
08-03-07 CD4 509 @31.8% VL 370
11-06-07 CD4 570 @30.0% VL 140
02-21-08 CD4 648 @32.4% VL 600
05-19-08 CD4 695 @33.1% VL < 48 undetectable!
08-21-08 CD4 725 @34.5%
11-11-08 CD4 672 @39.5%
02-11-09 CD4 773 @36.8%
05-11-09 CD4 615 @36.2%
08-19-09 CD4 770 @38.5%
11-19-09 CD4 944 @33.7%
02-17-10 CD4 678 @39.9%  
06-03-10 CD4 768 @34.9%
09-21-10 CD4 685 @40.3%
01-10-11 CD4 908 @36.3%
05-23-11 CD4 846 @36.8% VL 80
02-13-12 CD4 911 @41.4% VL<20
You must be the change you want to see in the world.  Mahatma Gandhi

Offline Jeff G

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Re: Harrassment from the Health Department
« Reply #5 on: November 03, 2009, 04:26:43 PM »
I had a similar situation happen when I moved back to Alabama . I had to get retested to qualify for Ryan white funding or medicaid I think . Next thing I knew I got notes on the door and a phone call from a woman who insisted I come in for counseling and a list of people I had slept with . I had just began chemo and steroid treatments , I also had shingles at the time and was in a terrible mood to say the least.
I explained that I had tested POZ 20 something yrs. ago in Alabama and did not see the need for all of this but she wasn't having it , Long story short I came unglued on the poor woman who was just trying to do her job . I have never in my life been so ugly to another human being . She threatend to have me arrested but I never heard for her until I called her to apologise . We had a laugh when I told her if she still wanted to have me arrested please give me a heads up so that I could arrange a photographer so that I would have another picture to go into my disfunctional family album . I never did the interview with them .  

Offline Basquo

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Re: Harrassment from the Health Department
« Reply #6 on: November 04, 2009, 08:00:14 AM »
9.5 years since first positive test, and I've not once been contacted by any health department, local or otherwise. And I tested under my name, too. I'd tell them to stuff it, anyway.

Online leatherman

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Re: Harrassment from the Health Department
« Reply #7 on: November 04, 2009, 09:06:07 AM »
having just moved to SC from OH, my case mgr from the clinic informed the local health dpt. So I got a letter in the mail with an appt. I drove all the way over there (I'm living in the sticks on one end of the county, so it was 12 miles one way down the highway to the nearest health dtp office), just to find the people that scheduled the appt weren't even in the office that day!

Needless to say I had a few choice words with the agents in the office, the offending agent on her cell phone and wrote a nice but bitchy letter to the offending agent and her office partner. I explained how I live in another city, have no car and am on disability, so it was a great inconvenience to me to borrow a car, waste my time, and use my part of my limited resources to put gas in the car. I told them how I am used to having to attend appts scheduled by these agencies to continue receive the assitance that I do, and that I thought this appt would have been to facilitate getting my SC medicaid card. I also explained that I had actually had AIDS for 16 yrs and wasn't some newbie poz. Yes, I knew about safe sex. Yes, I was on medication, like I have been for 17 years. and No there are no partners to contact because they're all dead!

(well, it's true. Part of the reason for my move back to my family was because of Jim's death a year and a half ago. And speaking of Jim, the Oh health dpt tried to contact Jim twice about his poz result - the first time, the day after he died; and the next the day after I scattered his ashes ::) )

The health dept agents would have known all this if as they put it "oh yes, we work closely with them. we work hand-in-hand with the Clinic". Especially since I was in the case mgr's office when she called them about me and told them all this exact info.  ::) After they received my letter, everyone called up and apologized to me on the phone. Of course that was nice but just before I hung up, I did point out to the agent that although the apology was nice, she still wasn't covering the cost of the gas for my wasted trip.
leatherman (aka mIkIE)


chart from 1992-2013; updated 2/09/13  Reyataz/Norvir/Truvada

Offline Miss Philicia

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Re: Harrassment from the Health Department
« Reply #8 on: November 04, 2009, 11:13:53 AM »
9.5 years since first positive test, and I've not once been contacted by any health department, local or otherwise.

I've never been contacted by any health department either.
"Iíve slept with enough men to know that Iím not gay"

Online leatherman

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Re: Harrassment from the Health Department
« Reply #9 on: November 04, 2009, 12:33:13 PM »
I've never been contacted by any health department either.
that could be because of the date when you were diagnosed - that's when you get reported to the health dpts. According to http://www.statehealthfacts.org/comparetable.jsp?ind=559&cat=11 PA didn't start name reporting until oct 2002.

Minnesota was first in October 1985, and Massachusetts was last in April 2007

OH started way back in June 90, so I was reported to the CDC a long long time ago (in a galaxy far far away ROFL)

Hmmm, since I didn't tell the OH dpt of health that I was leaving the state, wonder if this makes me listed in OH and SC now?? Probably. LOL (Heck! It's been three months and they still haven't "terminated" me from their medicaid and food stamp programs, I wouldn't be surpirsed if they still have Jim and Randy on some list in Canton too.  ;D)
leatherman (aka mIkIE)


chart from 1992-2013; updated 2/09/13  Reyataz/Norvir/Truvada

Offline Miss Philicia

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Re: Harrassment from the Health Department
« Reply #10 on: November 04, 2009, 12:43:57 PM »
I lived in NYC when I was first tested, I only moved to PA five years ago.  So yeah, I know why I wasn't initially contacted in NY but nothing happened when I moved here either but maybe case management handled cutting that off from happening.
"Iíve slept with enough men to know that Iím not gay"

Offline justaguy

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Re: Harrassment from the Health Department
« Reply #11 on: November 04, 2009, 09:00:20 PM »
I felt harassed too!  Within two weeks of my diagnosis, I had told my most recent sexual partners, but NOT the person I felt had infected me.  I knew that the health dept would be contacting me, and I wanted them to do the dirty work on that case.  Ironically, I had slept with one guy about two weeks before being diagnosed, and he had ALSO slept with the guy that infected me.  I came clean to him, even though we had been safe, I told him I tested positive, and I thought that our common guy was the one who infected me.  He wound up testing positive two weeks after I did - but was contacted by the health dept. within three days - took them three MONTHS to get to me.  When they finally did, I was prepared with a list of partners, including the friend who tested positive shortly after me.  She said she had solved the case, he must be the one that infected me.  Impossible for a number of reasons.  We had only slept together ONE TIME, two weeks before I tested positive, and we were safe.  My CD4 was only 134.  I obviously had an older infection.  Then she berated me for an hour, because she didn't believe my list was long enough, she actually said "people who get HIV usually sleep around a lot more than this"  And didn't believe me when I told her I didn't remember the name of a guy I had slept with when I was out of town.  She also referred to it as an "investigation", and required my positive friend to come in, so she could tell him that I had tested positive, even though he'd already had a visit with the HD.  I told her not to bother him, because he already had been tested and WAS POSITIVE, and had already talked to the health department, but she still insisted that he come visit her.  It was the most ridiculous waste of time for all involved.  I'm sure they are used to dealing with all sorts of issues, but I'm not some flake!  She seemed shocked that i had a doctor and was already on meds. 
Estimated infection: 3/2008
Tested HIV positive: 3/31/2009
CD4 136/unknown %/VL 150,000: 4/6/2009
Started Atripla 4/17/2009
CD4 255/19%/VL 409 5/27/2009
CD4 247/??/VL 161 6/27/2009
CD4 257/21%/VL 60 7/22/2009
CD4 352/22%/VL Undetectable 10/21/2009
CD4 490/27%/VL Undetectable 2/15/2010
CD4 397/?/VL Undetectable 7/2/2010

Offline pos2007

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Re: Harrassment from the Health Department
« Reply #12 on: November 04, 2009, 09:39:54 PM »
Greetings from  the  state of Misery ( Missouri). ::) I  understand  them  wanting to  contact any other people  you  might  have exposed,  but  I  get tired of the  health  department  people coming  by every 2 months ( even  though  the  papers say it  has to be signed every 6 months) to  make  us  sign papers  that say  we  have  to  have  protected  sex  and  if we have  unprotected  sex or  do  not  disclose to partners or  doctors we can  go  to  prison. :o At  least  they  have  finally  quit asking  whether we want  to  change  our  story  or  not. >:(   ??? My  kids want  to  deck  them . An assistance  program  would be  more appropriate. If they harassed people with other STD's like  this,  there would be a political  lobby. 
Diagnosed  CD4 138 VL. 38,000
Partner Diagnosed CD4 <20  VL.  488,000

Offline confidentIwillbeOK

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Re: Harrassment from the Health Department
« Reply #13 on: November 04, 2009, 10:13:19 PM »
If they harassed people with other STD's like  this,  there would be a political  lobby. 

......fuck that.....why does it have to be "other STD's?" If that BS is happening why can't HIV positive people and the HIV medical/care community lobby to change these practices?

Offline Jeff G

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Re: Harrassment from the Health Department
« Reply #14 on: November 04, 2009, 10:21:16 PM »
I'm certainly not defending for or against it but as I understand it they do contact tracing for other stds as well and in some cases such as tuberculosis mandate treatment . In my state its the law that requires the health dept . to follow up on these cases . I have never heard of six month checkups on people with HIV . I would have a major problem with that for sure .
« Last Edit: November 04, 2009, 10:26:53 PM by jg1962 »

Online leatherman

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Re: Harrassment from the Health Department
« Reply #15 on: November 04, 2009, 10:21:58 PM »
I  get tired of the  health  department  people coming  by every 2 months ( even  though  the  papers say it  has to be signed every 6 months) to  make  us  sign papers  that say  we  have  to  have  protected  sex  and  if we have  unprotected  sex or  do  not  disclose to partners or  doctors we can  go  to  prison
do you have more information about this?!?! :o
I just looked through the state of missouri's DOH website http://www.dhss.mo.gov/ and it doesn't say anything about this kind of procedure. It does mandate the one time reporting to the CDC (with a form to be signed by the poz individual) but nothing about signing papers every 6 months.

edited to add:
the only "semiannual" registration that I came across described in Missouri law pertains to persons convicted as sexual predators http://www.mshp.dps.missouri.gov/MSHPWeb/PatrolDivisions/CRID/SOR/factsheet.html
« Last Edit: November 04, 2009, 10:38:27 PM by leatherman »
leatherman (aka mIkIE)


chart from 1992-2013; updated 2/09/13  Reyataz/Norvir/Truvada

Offline denb45

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Re: Harrassment from the Health Department
« Reply #16 on: November 04, 2009, 10:53:44 PM »
I've never been contacted by any health department either.

I never have either, but, I tested POZ+ way back in 1987 in Calif. also in 2001 when i moved to New Mexico, I was never contacted by any local health dept. I guess being on Ryan white and being on state ADAP with the state of New Mexico, after living here for the required 3 months, before I could even get any HIV+ services was the reason why........, I was lucky enough to have 4 months of HIV+ Meds when I left CA. to move to NM, I planned ahead before I moved, so, I already knew what the deal was....... each State is a little different, so it's always good the check and plan ahead before you move......
« Last Edit: November 04, 2009, 10:56:02 PM by denb45 »
"it's so nice to be insane, cause no-one ask you to explain" Helen Reddy cc 1974

Offline LBpozguy

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Re: Harrassment from the Health Department
« Reply #17 on: November 04, 2009, 11:33:17 PM »
Wow, that is amazing what some of you have been through.  I tested POZ in Sept 08 and have never been contacted by my local health dept. I also had syphilis a few years back and never was contacted the either.

What happens if you refuse he interviews and refuse to give them names?
Feb 08 neg
Sept 08 - First poz test
Sept 08 CD4 558 (% unk) VL 11000
Dec 08 CD4 480 (29%) VL less than 700
Mar 09 CD4 370  VL 25000
June 09 CD4 425 VL 68000
Aug 09 Started Atripla
Sept 09 CD4 639 VL 100
Nov 09  CD4 716 (35%) VL Undet!!!!!!!!!!!!!
Jan 10 CD4 685 VL UND

Offline weasel

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Re: Harrassment from the Health Department
« Reply #18 on: November 04, 2009, 11:52:23 PM »


   Here in South East Missouri the health department  Case Workers   LOVE to visit !

   It is just a way  to spend  their day !

    Here the Health Department MUST  get as many HIV/AIDS  people on there case load as possible !

    IT IS A MONEY  thing !

    This is a poor  state and "they "   know how to work the system !

    Bob and I live too far out  for the caseworker come here  :o

    I did ask her to stop by once , was going to Saint Louis so it was on her way !

    Not worth the visit ! had No enterest ......................


                    I go to group and leave the rest alone ..................

                 They are MY connection to Ryan White ,so there is some good  :)

                                                      Just me ,
                                                                      Carl

   
" Live and let Live "

Online leatherman

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Re: Harrassment from the Health Department
« Reply #19 on: November 05, 2009, 12:19:04 AM »
   Here in South East Missouri the health department  Case Workers   LOVE to visit !
    IT IS A MONEY  thing !
    Bob and I live too far out  for the caseworker come here
    Not worth the visit ! had No enterest ......................
sorry, I really didn't understand all that to be honest. ???

First health departments don't charge a client for a visit, so there is no money to be made. Matter of fact in most states the HIV+ person has to visit them, as they don't have the funds to pay for enough workers to actually do in-home visits. Exactly how does the health dpt in Missouri make money by visiting HIV+ people?

and second, on what you do base that "they love to visit" when you state that they had no interest in visiting you and have never visited your residence? Your personal story seems to support quite the opposite of your original statement. And that's where I got confused by your post. ;)

I'm only trying to find out the facts here because if Missouri HIV+ residents are being so discriminated then attention needs to be called to this immediately, as it would be the only state in the union requiring semi-annual "sign ins" when the federal CDC only require it once, and all the other states only require it once.

One would think that people would be up in arms about such blatant discrimination :o; but I've never heard of such a thing until pos2007's statement and now yours.

If they harassed people with other STD's like  this,  there would be a political  lobby. 
there has already been mandatory STD reporting (chlamydia, gonorrhea, hepatitis , herpes, syphilis etc) in effect at the federal and state levels for many decades. These are all communicable diseases and one method to reduce the spread has been reporting the patient to insure treatment, teach preventative methods, and partner notification.
leatherman (aka mIkIE)


chart from 1992-2013; updated 2/09/13  Reyataz/Norvir/Truvada

Offline pos2007

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Re: Harrassment from the Health Department
« Reply #20 on: November 05, 2009, 12:48:44 AM »
leatherman,   she was just  here the  other day.  her  letter headed Annual Update  stated that  she  is required to come by  and  have  us  sign  the  papers every  six  months  so  the  heaqding should  have  said biannual.  I  asked  her  why  she  was here when  it  had  only  been  3.  Never  got  an  answer.  I  think  the  more trips  they  make  the  more  they  get  paid. i  just  pulled  the  letter  out  of  the  file  .  it  states,  quote" These forms need to be completed every six  months".  also states  we  have to  provide the "last  visit to Dr's. , change  in  Medication, etc,  Dr's Visits or  lab results in  last 6 months,  Release  of  information  from  doctors to  the  health  department,  and any  changes in  phone  number or or address requires  that  you  contact them as soon as  possible."   I  stand  corrected.   she  came  last  4 months  and  11 days between  visits. The trip before was 2  months. It  states that if  your  paperwork  is  not  updated,  there will be a suspension  or  loss of  benefits. ( which we don't get any  of  any   longer anyway).  With  the  new rules,  HSI  does  not  pay if  you  have Medicaid  nor  does  ADAP/ Ryan  White  so  there  is  no  benefit to  be  had.  Just  the gov't still  rooting  into  your  life. If I  had a way to  scan this  page and deleate our  names,address and  dates,  I  would  post  some  of  these  papers to back  up  what  I  am  saying,   If  weasel  is  in S/E Mo,     chances are the same   woman  comes to  see him   also.  I  think  there are 3 women  in 3  districs. /the case  managers  in /saintlouis are flabbergasted about the way this  operates down  here.
« Last Edit: November 05, 2009, 01:14:12 AM by pos2007 »
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Online leatherman

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Re: Harrassment from the Health Department
« Reply #21 on: November 05, 2009, 01:19:01 AM »
It  states that if  your  paperwork  is  not  updated,  there will be a suspension  or  loss of  benefits. ( which we don't get any  of  any   longer anyway.)
OIC  ;) ;D
that's not the official HIV/STD notification to the CDC. That usually only happens once, when you're first diagnosed. Although, as in a case like mine, if might happen another time if you move into another state.

Instead that's some sort of requirement to keep your state benefits. since it's from the health dpt., I would imagine that it's either Ryan White funding or your state medicaid benefits. Obviously, the state of Missouri thinks that it is still supplying some sort of benefit to your household, otherwise there would be no need for your signature and that data.

in Ohio I had to do that same paperwork every 6 months for the first 3 yrs, since I was on SS disability, and receiving food stamps and a medical card from the state. After 3 years, I "graduated" to a once-a-year "review" to keep my case open and approved.

If you're sure that you are no longer receiving any benefits (ryan white funding, medicaid, food stamps, etc) there is no law requiring you to submit to their visits or forms and, as a free american citizen, you do not have to submit to procedures like that. and that's why I was concerned. there is NO federal or state law requiring you to fill out forms like that every 6 months just because your HIV+; but there are regulations that require that kind of information if you want to receive state benefits.

However, before you refuse to comply to signing those forms next time because you no longer receive any state assistance, you really need to contact your state case worker and find out exactly what is going on. you might be missing out on benefits accuring that you don't know about.  ;)
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Offline skeebo1969

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Re: Harrassment from the Health Department
« Reply #22 on: November 05, 2009, 02:19:19 AM »
I don't understand why everyone feels compelled to disclose to the HD when they visit.  I mean it may be viewed a admirable thing to do, ya know give notice that I probably infected a slew of people so they can get out there and save their (recently diagnosed or potentially infected) lives.  Truth be told that is not what the health departments sole intentions are though.  They just want to put us on file along with everyone else we may have come in contact with sexually.

   If they come knocking and asking and you don't feel comfortable telling them information, by all means don't tell them.  Also keep in mind this information could possibly be used against you.  They have no way of telling who I infected, even if I supplied them with a list because who the hell knows what the other party is doing .

  If you feel harassed tell them so and send them on their way.

  When I was diagnosed I was sleeping with both my ex-wives.  I was not married to either of them, however we would get together from time to time.  I did not tell the health department of this because I wanted to tell both of them myself.   I knew my second ex wife would test negative.  My first ex though, I pretty much knew there was no way in hell she could come away without a positive result.  I was not about to let some stranger give her the news that she needed to test.  I needed to do that myself.  They tried to pressure me to tell them but I let them know that I would take care of it.

Luckily, both ended up testing negative....
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Re: Harrassment from the Health Department
« Reply #23 on: November 05, 2009, 09:15:07 AM »
so they can get out there and save their (recently diagnosed or potentially infected) lives.
Partner notification is just one method (and way less Draconian than detention camps) that governments have at their disposal to hopefully stop the spread of an epidemic. This method and many others have been developed through the CDC and at the disposal of health departments, STD clinics, and doctors to slow the spread of STDs for literally decades in America - with proven good results. Surely if these methods work in slowing down the spread of non-lethal gonorrhea, etc, then these same methods should be employed to help slow the spread of the lethal HIV virus.

I know of 7 people who are alive today (because untested and untreated HIV is a terminal disease) because they were tested, got a positive diagnosis, and began treatment after being notified by the health department. Partner notification may not save everyone's life; but if it was the cause of saving the life of one of your friends or family member you wouldn't think of it as "harassment". Also it's not like these (contrary to misinformation) one-time voluntarily-accepted visits from health departments with voluntarily withheld or given data can truly be considered legal "harass".  ;)

http://www.cdc.gov/mmwr/preview/mmwrhtml/00000042.htm
"Partner-notification data from several states reveal a high seroprevalence rate, ranging from 11% to 39%, among persons identified as sex or needle-sharing partners, many of whom are themselves engaging in high-risk behavior. By identifying such individuals, the partner-notification process can target risk-reduction messages to those at greatest risk of acquiring or transmitting infection. Thus, partner notification provides both primary and secondary prevention of HIV infection."

Quote
Truth be told that is not what the health departments sole intentions are though.  They just want to put us on file along with everyone else we may have come in contact with sexually.
Most HIV testing has been anonymous for years, so there's not always even a name in a database. In 1982, I was notified that one of my partners has tested positive for an STD so I went and was also tested and found positive. (and received treatment from my personal physician before I even had any symptoms ;D) My positive STD test and subsequent partner-notification from my test was also anonymous. It wasn't until I actually was diagnosed with AIDS until my name was ever placed in any database. (however, your results may vary by state ;))

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I did not tell the health department of this because I wanted to tell both of them myself.
Your personal sense of responsibility is quite admirable, and I say that in truly the kindess way :-*. I wish more people were as honest and caring as you.

The full methods and guidelines laid out by the CDC include just that exact method of notification also. (http://www.cdc.gov/std/treatment/2006/clinical.htm) Some plans ("expedited partner therapy") even provide antibiotics for an anonymously tested male to take to give to his anonymous female partner ("Patient-delivered partner treatment with azithromycin to prevent Chlamydia trachomatis"). Other notification methods may be through doctors, rather than government agencies too.

But there's also the unsolvable problem that many other people may not even know the name of the person with whom they had sexual contact, so partner notification is not the end-all be-all solution. It's just one of many provable methods that has helped to reduce the number of STD cases and the number of HIV-infected individuals. Partner notification has saved lived and educated people.
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Offline pos2007

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Re: Harrassment from the Health Department
« Reply #24 on: November 05, 2009, 11:35:51 AM »
The county  health  departments that  make these  regular  visits are  separate from  the State  medicaid office that does  not  hassle  us. Also,  as  I stated,  there is  no Ryan  White  benefit  to  us any  longer,  but  that does  not  keep  the  county  people  from  coming  by. Supposedly  they have to  make regular reports to  the  state about everyone  in  the  county  with  HIV.
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Offline denb45

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Re: Harrassment from the Health Department
« Reply #25 on: November 05, 2009, 01:16:26 PM »
The county  health  departments that  make these  regular  visits are  separate from  the State  medicaid office that does  not  hassle  us. Also,  as  I stated,  there is  no Ryan  White  benefit  to  us any  longer,  but  that does  not  keep  the  county  people  from  coming  by. Supposedly  they have to  make regular reports to  the  state about everyone  in  the  county  with  HIV.

That just doesn't sound right to me, I do know every State is a little different, but, why the continued hounding of HIV+ people in your County , something about this just isn't right  ??? no county health dept. even bothers me at all, for anything here in the County & State I live in   :(  I wouldn't give them the time of day, if they harassed me like that  ??? someone must have given them your name, as a contact for STDs or HIV+ unprotected sex, that would be the only real reason for such Harassment  ::)
« Last Edit: November 05, 2009, 02:32:38 PM by denb45 »
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Re: Harrassment from the Health Department
« Reply #26 on: November 05, 2009, 03:25:22 PM »
Sorry to have to get so picky here; but....
My bills so far  this  year  have been $101,000.00 not  including  yesterdays hospital/ doctor bills knock on wood mostly  paid by  the  insurance. Medicaid  is paying  for my meds ( 15  now)  since   Healthlink  won't due  to  hiv.  Retail  price  for  my  prescriptions (  I am  sure medicaid  pays a discounted rate)   has  been  just  over $27,000.00 so far this  year. I pay a $2.00 co pay  for  each prescription  each  month. Last  Year HSI/  Adap paid  for  part  of  my  meds till medicaid  finally  started  paying.  My  out  of pocket was still  over $10,000.00 since HSI  & ADAP  wouldn't  pay  for  some  meds nor  would  medicaid. Medicaid  has  finally  picked  up  paying  for all  of  my  meds except 3.
just on Nov 3rd, you claimed that medicaid is paying for your meds; plus you wrote like that happened fairly recently too. That would mean that you probably ARE receiving some sort of gov't assistance which would explain why they are still requiring paperwork from you. I mean, if the state paid for any medicine for the month of Nov, the current month, then you would still be active in the gov't rolls until the following month (and many states require a letter requesting termination of their services or you will stay on their rolls. That's a problem I've had myself in leaving OH and moving to SC)

How  do  you get  a primary  care Physician  to  take  an  HIV  medicaid  recipient?  No-one  here wants  to  do  that.  All I  have  is  my   HIV  Dr.  mostly every  3  months.
clear back when you first started posting you made this comment about looking for a primary care doc that would accept medicaid. This comment makes it sound like you have actually been receiving medicaid for nearly a year now. Therefore having state assistance for that long, you very well could still be having to sign forms and disclose information in exchange for that assistance.

Reply #20 on: Today at 12:48:44 am
Last Edit: Today at 01:14:12 am by pos2007
by the way, uually the edit feature is best for typos not for such a big change like you made.  if you're going to come back and re-edit a post nearly half an hour later and nearly double the size of your comments, please either just make a new post or comment on how you radically altered the substance of your post. If I hadn't been looking at your old posts, which included re-reading this whole thread, I would have never noticed how you answered some of my comments and questions by changing your original post. Making changes like you did makes it impossible to follow the flow of the conversation properly, since this isn't a real chat. Thanks for your help with that! ;)

I'm sorry if I have offended you any with my questions and comments, but parts of your story just don't add up to the gov't harassing you simply because you tested positive or because you are still HIV+. Most of your story simply looks like you're bothered, as all of us receiving some type of public assistance are bothered, by the endless amounts of paperwork that we are required to fill out. But that's an entirely different matter than being harassed by the health dpt. after an inital HIV+ diagnosis.

Heaven knows, moving to SC just 2 months ago, I have filled out a gazillion forms. I still have more to fill out, sitting on my desk right now. Of course, all these forms have all the same personal information about myself, date of illness, meds, doctors, etc. Everyone may be so "afraid" to disclose that info but if you don't, you don't get assistance.

And I'll have even more to fill out soon when I get forms back from Ohio (where I moved from) because I had to fill out forms from them just to leave the state and end my assistance up there. (Which they screwed up, causing me to fill out more forms, and now I'm waiting for their replies) But when all is said and done, it's a heck of a lot easier to fill out forms than it is to starve to death or to pay out $2790 a month for my prescriptions when I only make $625 from my SS disability payment each month.

Oh! There's even another form for me to fill out that will have SC pay my medicare premium and I'll get $98 back into my check and go back to making $722 a month like I was in OH. ROFLMAO it's enough to make your head spin and wonder if the gov't (and not age or the meds) isn't the problem for any HIV-mental issues. LOL

but filling out these kinds of forms is all about receiving gov't assistance and has nothing to do with any health dept. contact (partner notification) when you are first diagnosed positive, which was what the OP was discussing
leatherman (aka mIkIE)


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Offline skeebo1969

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Re: Harrassment from the Health Department
« Reply #27 on: November 05, 2009, 03:59:12 PM »
Your personal sense of responsibility is quite admirable, and I say that in truly the kindess way :-*. I wish more people were as honest and caring as you.


  LOL...  I know two very beautiful ladies who would argue against that.  While I do hate some of our governments intrusive habits (yes I am anti government), I do agree with the whole reporting deal as long as one feels comfortable doing so.  My post does not reflect that stance.  I guess it was lost during my little rant because I was having visions of some guy with a name tag on his shirt along with one of those fake county badges pounding on someone's door.

 
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Re: Harrassment from the Health Department
« Reply #28 on: November 05, 2009, 04:37:32 PM »
I do agree with the whole reporting deal as long as one feels comfortable doing so..... I was having visions of some guy with a name tag on his shirt along with one of those fake county badges pounding on someone's door.
that's why i was trying to point out the difference here. ;) It's one thing to have an one-time interview with the health dpt and having to give out personal details for partner notification, etc,; but it's quite another thing to have to disclose that personal information to prove your citizenship, financial status and medical issues to receive gov't assistance. The former is intrusive and a pain in the butt but helpful; while the other is necessary and not much to do in light of the assistance available. The issues in this thread are definitely apples and oranges even if both issues are about the government barging into our lives.  :D
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Offline BT65

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Re: Harrassment from the Health Department
« Reply #29 on: November 05, 2009, 06:16:53 PM »
I was never, ever contacted by a health department.  It could have to do with my being tested in '89 in a treatment center that no longer exists.  Who knows. 
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Offline pos2007

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Re: Harrassment from the Health Department
« Reply #30 on: November 05, 2009, 11:46:54 PM »
Leatherman,  You seem  to  be trying to  bust  my  chops just for  the  delight  of  doing  it  or maybe you just  like to argue.  Take a chill  pill  man!.  LIKE  I SAID,   The state  medicaid  office  is  a whole  different  program  than  the county  health  department.  different people,  different  office,  different program.   The  county   handles  HSI &  ADAP.  We  get  neither  since  Medicaid  recipients have to  use  the  medicaid.  Since  we  get  neither,  there  is  no reason  why  the county  should be  here quizing and  having  us  sign  papers all  the  time and making  us sign  that we will use concoms  and  can go to  prison  for  no disclosure and getting copies of all  our  labs.  Medicaid  only pays   for my HIV  meds.  I  have  private insurance  for  the rest or I  pay myself. There is another person  that  lives  here that only  has  medicaid because no  insurance  company  will  insure  them. Unless you  live  here and deal  with  it,  don't argue. I  only state  the  facts and  have all the paperwork to back  it  up. I don't make any attacks on  you for making  multiple quotes  and  complaints about  the  same  thing. Please  give me  the  same  courtesy when I make corrections or additions to  my  posts and please don't be so  hypocrital when I see that you use  the  modify  button  to add edits to  your posts.  Obviously you don't have to  struggle as  hard as  I  do sometimes spending  over an hour to make  a post and  have  to  edit  yours 5  or six  times  like I  do to get the senteces, words and spelling  right.  A frank  discussion, or sometimes a good venting can do a lot  of  wonders,  but being argumentative without  living  here and  without  the  facts is very  unproductive. Please! if you would read more  and  post  less,  you  will find I  am  not  the only one  who  has made the same comments here in Missouri including within  this particular thread.
« Last Edit: November 06, 2009, 12:03:23 AM by pos2007 »
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Re: Harrassment from the Health Department
« Reply #31 on: November 06, 2009, 01:46:58 AM »
Anyone else experience this type of degradation and invastion of privacy and harrassment?  What did you do about it?
I'd like to say I'm sorry Redbull for what's become a hijack of your thread, and say thanks to the people that have keep it on track. As I pointed out already, the issues in this thread are definitely apples and oranges even if both issues are about the government barging into our lives. Although we can quibble about how "harassing" the in ital contact with our state's health department is, I hope my explanations about partner notifications, medical treatment, prevention instructions, etc. at least explained why there was a benefit to that harassment and was some contribution to your original post, redbull. Even though your thread was about the in ital STD reporting/interview/partner notification routine, I was concerned at hearing that people in Missouri were seemingly being mistreated and harassed by their state government for just being positive.

Leatherman,  You seem  to  be trying to  bust  my  chops just for  the  delight  of  doing  it  or maybe you just  like to argue.
Sorry, but you are mistaken on that point. I'm actually quite a nice guy. I read your original post and was actually worried (which I noted in some PMs to other people, including a moderator, and noted within this thread) that such discrimination might be happening.
I'm only trying to find out the facts here because if Missouri HIV+ residents are being so discriminated then attention needs to be called to this immediately, as it would be the only state in the union requiring semi-annual "sign ins" when the federal CDC only require it once, and all the other states only require it once.
Actually, your story just didn't make a lot of sense to me, and I've been trying to find out exactly what's going on. Because if you are NOT receiving any state aid (which you are though through medicaid paying for some meds), and have already had the health dpt and/or CDC notified about your hiv positive status (which you say you have), then you ARE being discriminated against and harassed and something needs to be done. It's a fight I was trying to decide if it worth getting involved in and actually bringing to the attention of the whole forum. However you seem to be the only person that I've ever heard of in all these years being harassed like this solely because of your HIV+ status. That's why I inquired into your previous posts and asked you about receiving assistance, because I thought you might be confused for in that situation, more paperwork is required. So quite frankly I think there has to be more to the issue in your situation as Missouri law (for the health dpt and STD regulations throughout all counties) does NOT require a semi-annual review like you are experiencing. Only people receiving state assistance or sexual predators are required by law to report like that. If HIV+ people in Missouri were being forced to be "reviewed" twice a year in some Nazi-esque (show us your papers Jew) sort of way, I think that topic would have come up in some discussion throughout the years.

Please! if you would read more  and  post  less,  you  will find I  am  not  the only one  who  has made the same comments here in Missouri including within  this particular thread.
I did read his post and even commented on it. However I noticed I got no more response on that either so I could understand why he thought he was being harassed or discriminated against. Especially after I pointed out that he claimed that the case workers "LOVE to visit" yet was never visited. Don't you think that's odd? Weasel did make similar comments but then contradicted them, which only added to my confusion about this whole issue. According to him, he does NOT have a review every 6 months like you; He actually said that he has NEVER had one.
Quote
    Bob and I live too far out  for the caseworker come here   
    I did ask her to stop by once , was going to Saint Louis so it was on her way !
    Not worth the visit ! had No enterest ......................

Please  give me  the  same  courtesy when I make corrections or additions to  my  posts.  Obviously you don't have to  struggle as  hard as  I  do sometimes spending  over an hour to make  a post and  have  to  edit  yours 5  or six  times  like I  do to get the senteces, words and spelling  right.
I spent an hour and an half writing my previous post offline in notepad before even posting it. ;) This one took another hour and an half. Not because I want to "bust your chops" but because if our "discussion" is going to be of any use to either of us, I like to spend time to put my ideas together, research, spell check, proofread, etc. (If you check my past posts you'll see that I'm a computer geek and that I have quite frequently advocated that people compose their posts offline to avoid losing them, to use a better spell check and to have time to clearly put their thoughts together.) I know my long posts do annoy some people, but how the heck is anyone supposed to understand me without a little bit of background to understand where I'm coming from?  ::) ;D :D

However, it is common internet courtesy to only edit a post for typos or minor corrections/additions. You changed and added so much to your post (the one that I pointed out) that it nearly doubled in size and content. That's just rude and makes for a bad thread conversation >:(. If you are going to make that much of an addition you really need to just write a second post, so that people can follow along and respond to you. People usually do not go back and re-read an entire thread to make sure that previous posts haven't been dramatically altered. (It's even weirder when people actually delete their previous posts and leave holes in the thread's conversation)

everything in bold is what you added to your original post
(and I'm checking before I post this to make sure you haven't radically changed your last post since the last time I read it around 1215 ;) )
Quote
leatherman,   she was just  here the  other day.  her  letter headed Annual Update  stated that  she  is required to come by  and  have  us  sign  the  papers every  six  months  so  the  heaqding should  have  said biannual.  I  asked  her  why  she  was here when  it  had  only  been  3.  Never  got  an  answer.  I  think  the  more trips  they  make  the  more  they  get  paid. i  just  pulled  the  letter  out  of  the  file  .  it  states,  quote" These forms need to be completed every six  months".  also states  we  have to  provide the "last  visit to Dr's. , change  in  Medication, etc,  Dr's Visits or  lab results in  last 6 months,  Release  of  information  from  doctors to  the  health  department,  and any  changes in  phone  number or or address requires  that  you  contact them as soon as  possible."   I  stand  corrected.   she  came  last  4 months  and  11 days between  visits. The trip before was 2  months. It  states that if  your  paperwork  is  not  updated,  there will be a suspension  or  loss of  benefits. ( which we don't get any  of  any   longer anyway).  With  the  new rules,  HSI  does  not  pay if  you  have Medicaid  nor  does  ADAP/ Ryan  White  so  there  is  no  benefit to  be  had.  Just  the gov't still  rooting  into  your  life. If I  had a way to  scan this  page and deleate our  names,address and  dates,  I  would  post  some  of  these  papers to back  up  what  I  am  saying,   If  weasel  is  in S/E Mo,     chances are the same   woman  comes to  see him   also.  I  think  there are 3 women  in 3  districs. /the case  managers  in /saintlouis are flabbergasted about the way this  operates down  here.

I must say in conclusion, that I wish I could have helped you; but I am just as flabbergasted as those case managers that you spoke to in St Louis. Obviously they don't understand your situation as much as I don't; however I do believe that something is very wrong with the unique situation that you are in. I'll stand by my previous suggestion, and say that what you really need to do is speak with that case worker that visits you. If you are receiving no assistance from the state that requires those signed forms, then simply refuse to sign any more documents, and perhaps contact a lawyer/legal aid.

pos2007, I sincerly hope you find a resolution to your situation. :) (and if by chance you start your own thread to elicit help about this matter, I promise to steer clear and not participate. ;) )
leatherman (aka mIkIE)


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Offline skeebo1969

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Re: Harrassment from the Health Department
« Reply #32 on: November 06, 2009, 06:56:32 AM »

  Damn this is another reason I  never want to live in Missouri!  I can't imagine having to deal with Nazi's knocking on my door while I watch that God awful team the St. Louis Rams play.
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Offline denb45

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Re: Harrassment from the Health Department
« Reply #33 on: November 06, 2009, 10:55:01 AM »
 Damn this is another reason I  never want to live in Missouri!  I can't imagine having to deal with Nazi's knocking on my door while I watch that God awful team the St. Louis Rams play.

You'd be sup-prized what go's on in other States on their HIV+ policies, I'm not saying I agree with anything said in this thread, and I'm glad I don't live in one of those States, but I have to admit, it's very interesting to say the least, Missouri! is the mid-west, and it's considered the Bible-belt, it's a real shame, that POZ+ people have to go thur such religious-right-wing tactics living in those States , so to the original OP, I do hope that you can get this  problem resolved personally as well as legally  ???
« Last Edit: November 06, 2009, 11:10:56 AM by denb45 »
"it's so nice to be insane, cause no-one ask you to explain" Helen Reddy cc 1974

Offline clsoca

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Re: Harrassment from the Health Department
« Reply #34 on: November 06, 2009, 11:29:22 AM »
when the health department called me, I advised the seemingly cooperative social worker that he would need a subpoena to compel testimony from me. That is the only time they have ever called.
10/07 Infected
11/07 Seroconversion
07/08 Tested Poz
07/08 VL 487  CD4 658  (No Meds)
10/08 VL 286  CD4 724  (No Meds)
01/24/09 VL 30,100   CD4 329 CD4 30% (No Meds)
02/06/09 VL 44,000   CD4 367 CD4 36%  Blood Work @ UCLA (No Meds)
02/06/09 VL 44,000   CD4 317 CD4 35% Blood Work @ USC (No Meds)
02/12/09 VL 52,000   CD4 297 CD4 29%
02/12/09  Started Atripla
04/01/09 VL 60  CD4 667   CD4 48%
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Offline pos2007

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Re: Harrassment from the Health Department
« Reply #35 on: November 06, 2009, 12:21:47 PM »
What I  find interesting is that the Metropolitan areas of Kansas City and St.  Louis have completely different programs and  rules than  the rest of  the state. We have talked to case managers in St.  Louis, even  though they  have  told  us they are  supposed to  only  talk to  those within  their metropolitan area and  they  have told  us there are many from  the outstate like  us that  get no assistance  and  have  many  issues with the  local  health  departments. We have been advised several times our best bet  would be to  move to  the big  city.  we don't  have the luxury of  living too far out  that the the county  health  worker doesn't bother to  come see us.  It  is  only 11 miles to  her  office.  I almost think  that some  health department  workers try to  make  as many  issues as  they  can  for  job security,  paid  milage,  meal reimbursement,  etc.  I  also  find  it  interesting  that  the latest HIV figures the state shows  for  our area were  from 2003.   I also take  issue with  the way   they   keep all our  health  information  and all  these forms we  have  to  sign in a big  three ring notebook for each  of  us.   How secure is  that type  of record  keeping?  It  is  no  wonder that so  many  of  us  that live  in  this biggotted  small town gossipy  area travel to St. Louis for  our medical  care.  If  you  listen  to  that right  wing jerk  on  the radio,  you know what kind of area we  live  in.  I  went  to  the  same school  he  did.
Diagnosed  CD4 138 VL. 38,000
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Offline pos2007

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Re: Harrassment from the Health Department
« Reply #36 on: November 06, 2009, 08:23:52 PM »
And it is not just Missouri  that is  a mess:

Gary, Jacksonville, FL, 2009-10-22 12:15:16
I think a huge benefit to our community is ASO's, which the government is decreasing funding and giving it to the local Health Departments, which are horrible and offer no assistance nor knowledge about access to programs. They treat thier clients with disrespect and don't care about their needs. Yet, we are supposed to be ok with that. Most of us are still taxpaying citizens!

Mark Nowacki, Madison, 2009-10-20 19:29:16
I live in the Capital of Wisconsin.
The state HIV/AIDS director does as he pleases. How can they get away with no oversight or accountability?
« Last Edit: November 06, 2009, 08:29:21 PM by pos2007 »
Diagnosed  CD4 138 VL. 38,000
Partner Diagnosed CD4 <20  VL.  488,000

Online leatherman

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Re: Harrassment from the Health Department
« Reply #37 on: November 06, 2009, 10:12:17 PM »
I  also  find  it  interesting  that  the latest HIV figures the state shows  for  our area were  from 2003.
statehealthfacts.org, a website of the kaiser family foundation, using current data (mainly 06 and 07) from the CDC has a great chart for viewing all sorts of data state by state about cases of HIV, AIDS, deaths, and funding for ADAP, Ryan White, insurance, etc

http://www.statehealthfacts.org/profilecat.jsp?rgn=27&cat=11
according to the data, cumulatively 1987 to 2007, there have been 5,293 Missouri residents who have been diagnosed HIV+ but have not progressed to an AIDS diagnosis. Unfortunately up to 2007, there have been 1,030,832 diagnosed cases of AIDS in the USA, and Missouri has had 11,646 of those, accounting for 1.1% of the total US cases. Sadly 6,065 residents from Missouri have already passed away from HIV/AIDS.

more data is available directly at the CDC site but you have to dig through all their data to get to anything very pertinent to your situation http://www.cdc.gov/hiv/topics/surveillance/basic.htm See especially http://www.cdc.gov/hiv/topics/surveillance/resources/reports/2007report/pdf/2007SurveillanceReport.pdf

All of the Missouri demographical (and by county) information from 2000 -2009 can be found at http://www.dhss.mo.gov/HIV_STD_AIDS/Data.html See especially the doc http://www.dhss.mo.gov/HIV_STD_AIDS/09statsheet.pdf which has data up-to-date to 2009 for your state

and you may also be interested in this doc. this is the state's legal document that contains Missouri laws, regulations and procedures pertaining to reporting and tracking HIV/AIDS cases ranging from what questions are to be asked to how the data is supposed to be transported in the field and stored for long term analysis. Perhaps this 50 pg doc will have some information that you can use legally to determine how to stop the health dpt from reviewing your case so often.
http://www.dhss.mo.gov/HIV_STD_AIDS/HIVAIDSconf.pdf

I had to call up to job & family services dpt of the Ohio health dpt today because they did NOT yet send the form I need to make two separate divisions of SC health dpt approve me for services down here (medicaid and food stamps) . Thank god I brought 3 extra months of meds with me or I'd be pretty screwed by now! :o So trust me I'm no fan of the health dpts of these states either. One can't figure out how to quit giving me services though I haven't lived there for nearly 3 months (services that I can't access, I should point out, because they're 550 miles away, and it's a long walk through the Appalachian mountains!), and the other state's health dpt that made me drive 20 miles to met an agent who wasn't even in the office just so she could tell me that I was poz, should get treatment and should have protected sex now. I shut her up (and didn't have to sign a thing) when I explained that I've had AIDS (not just plain ol' HIV) for 17 yrs and don't have protected sex cause all my partners are dead from AIDS. ::) ;D :P Though two agents called me back and apologized for wasting my time, I pointed out that still nobody paid for my gas and time.

i hope you find some of those documents useful in your case. I'm going to go peruse the recent data from my old state of OH and compare that to the data here in my new state of SC to see how the situations are in both states.
leatherman (aka mIkIE)


chart from 1992-2013; updated 2/09/13  Reyataz/Norvir/Truvada

Offline SouthSam7

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Re: Harrassment from the Health Department
« Reply #38 on: November 06, 2009, 11:56:47 PM »
I think JG and I may have you all beat.  Alabama has got to be the worst.  I was told by my ASO when I tested positive that the health department would call me to set up an "interview".  Living in a rural area, I decided to drive an hour away to the man's office; I didn't want anyone at our health department to know (they probably do anyway).

I had no idea what I was in store for.  It was one of the worst experiences of my life, second only to finding out my brother had been killed in a car wreck.  This man was a sadist.  It was a hit and run.  He put me down, humiliated me and made me feel like dirt.  My name was printed on seemingly everything in his office.  I was in shock (back then everything was supposedly confidential). 

He was so cruel and he kept demanding names and contact information.  I honestly didn't have any names for him; I was infected in another state probably years earlier.  He was relentless.  His behavior was criminal.  That was six years ago.  That was the last time I cried (on the drive home).

Unfortunately that experience has changed the way I feel about this state, the system, the health department and about others getting tested, etc.  I tell people thinking of getting tested up front what to expect and to make up a story (say you got drunk and passed out at a party); no good can come from that type of degradation, cruelty and witch hunts. 

Honestly that experience couldn't have played out any worse.  I hope that prick from the health department rots in hell.

I had a similar situation happen when I moved back to Alabama . I had to get retested to qualify for Ryan white funding or medicaid I think . Next thing I knew I got notes on the door and a phone call from a woman who insisted I come in for counseling and a list of people I had slept with . I had just began chemo and steroid treatments , I also had shingles at the time and was in a terrible mood to say the least.
I explained that I had tested POZ 20 something yrs. ago in Alabama and did not see the need for all of this but she wasn't having it , Long story short I came unglued on the poor woman who was just trying to do her job . I have never in my life been so ugly to another human being . She threatend to have me arrested but I never heard for her until I called her to apologise . We had a laugh when I told her if she still wanted to have me arrested please give me a heads up so that I could arrange a photographer so that I would have another picture to go into my disfunctional family album . I never did the interview with them .  

Offline SouthSam7

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Re: Harrassment from the Health Department
« Reply #39 on: November 07, 2009, 12:00:30 AM »
p.s. You guys know you can click the "ignore" button on individuals if you so desire.

Offline pos2007

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Re: Harrassment from the Health Department
« Reply #40 on: November 07, 2009, 02:50:17 AM »
I had  come  up with some interesting analysis and contradictions  in auditing  the  links you provided. Nice links  by  the way; different than what I  had. After spending  an  hour  typing  up  what I found to post  here,  I  lost  it all since my log in  had  timed  out.   Anyway,  there are some  numbers  for   Missouri that vary  from 5% to 300%.  and  one  number  has a variation  between links  of 823% which is  the catergory I fit in,  being infected from  a blood transfusion.  I still don't find any credible  numbers for  the  county we live  in  and  the  Federal  Numbers for  Ryan White assistance for  the  metropolitan areas  of St.  Louis  and  Kansas City don't  match  the  number of reported cases or  the  number of people that are supposed to  receive care at  the  clinic we go  to.   St.  Louis area is  off by nearly  2000.  I  guess Alabama is where  they send  our case workers for interrogation training.  Gotta go.  It  is 1:49 A.M. and  the  laptop battery  is about  to  shut this  thing down  on  me.  Good  luck  on  your  meds. We went through  our entire retirement savings between trying to get  insurance and other programs to pay  for  meds and ending up  borrowing  money  up  to  our eyeballs,  before medicaid started to  consistently  pay.  The clinic ended up  provided me with 45  days meds one  time  so  I didn't have to  go  without.  having to go through   this mess all  over is  one reason I  won't move to  another state with one  of  the  kids. I've been asked to  move to Chicago several  times,  but  that state  has enough  money  problems as it is. I may  make a special trip to  drop  by  the  county  health office to see if  they secure  the records in  the same  manner that   Health and Senior Services  tells their STATE employees and  volunteers.  I do  know  the emails do  not  have the confidentiality statement that is required. I checked  in  my  trash  files to  make  sure. I get tired of going to the store or courthouse and  having people who  know me ask  what kind of blood disorder we  have.  The  info leaks  somehow.  Thanks for the study  links.  I'll try to save my  notes if the  battery   doesn't get me  first.
« Last Edit: November 07, 2009, 11:23:55 AM by pos2007 »
Diagnosed  CD4 138 VL. 38,000
Partner Diagnosed CD4 <20  VL.  488,000

Offline actupts

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Re: Harrassment from the Health Department
« Reply #41 on: November 07, 2009, 06:42:53 AM »
I think that a major distinction is whether one tests positive in a rural or urban area.  Health Department workers who are used to working with people with HIV act one way, rural health departments with few or no HIV cases are much more aggressive.  Instead of being a name on a list, you are an unusual event.  Many health departments are also much more aggressive in dealing with HIV-positive healthcare workers (like I was), regardless of whether the PWA posed even a theoretical risk to patients.

When I tested positive in 1993 while in Colorado, I was somewhere between the third and fifth person to ever test positive in the county.  (A total of 55 residents had had the virus, but most were diagnosed in Denver or elsewhere.) The resulting uproar, in many respects, changed the course of my life more than the virus itself.

While I tried to confidentially test under a pseudonym, the local health department guessed where I was a college student and notified my university without my consent.  A college psychologist and various local and state health department workers appeared when I showed up what I though would be for my second and confirmatory test. (Unfortunately, testing soon after primary infection, I endured several months of conflicting results.)  

"Contact tracing" seemed to consist of endless lectures on how I must of had more than two sex partners after my last HIV test, and that I was either lying or mentally ill.   When I started crying from the stress, the openly disgusted psychologist began to threaten me with psychiatric hospitalization unless I, as he put it, "man[ned] up."    The shrink went on to tell me at length how he could send the police to peoples houses for "wellness checks," and how he had the ability to lock anyone up for as long as he wanted.  All four people in the small room continued to insist that I must of had numerous sex partners,  and that I was in denial of my sexual orientation.    I finally called their bluff, refusing to sign anything and walking out of the room.

For the next two months, I was called by a state health department worker who continued to insist that I had numerous additional sex partners.  She also exercised her legal authority to review my medical records at the university health center and my dentist, seeking more sex partners and background information.  She also seemed determined to enforce their HIV-positive healthcare worker protocol, despite the fact that I only did surgery on lab animals and worked with human tissue mailed from elsewhere.  When she began insisting on a detailed description of my being molested as a child, despite several HIV tests nearly a decade later, I broke off contact.

In the ensuing uproar, the university decided I could not finish my biochemistry degree for fear I could transmit the virus to others if I cut myself, rescinded my graduate fellowship, terminated my employment, and violated my confidentiality.  I wound up homeless.  My T-cells plummeted nearly a hundred points a month until I was diagnosed with AIDS.  T

Even since that horrible experience, I have been afraid of the mental health system, out of fear that I could say the wrong thing and be locked up.  Psychiatrists are like policemen, say the wrong thing and either can have you locked up. While I, for a while, obtained counseling and help with my depression, the various GBLT providers rotated out.  After spending much of the last 16 years  enduring forms, intakes, and waiting lists, I finally gave up on mental healthcare and use alternative remedies (5-HTP, Vitamins B3, B6, B12, and D, fish oil, and a light box.)
« Last Edit: November 07, 2009, 05:44:35 PM by actupts »

Offline Ann

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Re: Harrassment from the Health Department
« Reply #42 on: November 07, 2009, 09:25:08 AM »
Wow, actupts, I'm appalled by your horrific experience. Nobody should have to go through something like that. And we wonder why some people are frightened to test, even now, sixteen years later?

I tested poz as a part of a "cluster" of eight in the town I live in, on a small island with a total population of only around 70,000. We were treated as an "unusual event", although the powers that be here weren't anywhere near as aggressive.

We were all asked to name names, although those of us who declined to comply were not harassed. I refused to name any of my sexual partners before the spring of 1997, because with hindsight, I knew that was when I seroconverted. There was no need for me to divulge any information from before that time. They did try to talk me into giving more information, but there was no sense of coercion involved. 

Oh, and it wasn't the government health department who wanted the names, it was the head of the GUM (genito-urinary medicine) clinic. It was only because I had been named (by a then ex-bf) that I was contacted and told I needed to test. I'm grateful for that, because who knows how long it would have been before I was diagnosed otherwise. While I'm grateful that the system worked in my instance, I don't believe in forcing people to name names. It's something that I think should be voluntary.

One thing that DID piss me off in a big way was the way the information about our cluster was handled. It made front page headlines in the island's newspaper. "HIV ALERT ROCKS TOWN" in 2inch letters under the masthead. ::) They didn't name names in the paper, but with this being such a small place, they didn't really need to. As a result some, but not all, of us were outed as poz.

Ann
« Last Edit: November 07, 2009, 09:27:53 AM by Ann »
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Offline SouthSam7

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Re: Harrassment from the Health Department
« Reply #43 on: November 07, 2009, 10:29:27 AM »
It appears we might have at least two different topics in this one thread. 
I had  come  up with some interesting analysis and contradictions  in auditing  the  links you provided. Nice links  by  the way; different than what I  had. After spending  an  hour  typing  up  what I found to post  here,  I  lost  it all since my log in  had  timed  out.   Anyway,  there are some  numbers  for   Missouri that vary  from 5% to 300%.  and  one  number  has a variation  between links  of 823% which is  the catergory I fit in,  being infected from  a blood transfusion.  I still don't find any credible  numbers for  the  county we live  in  and  the  Federal  Numbers for  Ryan White assistance for  the  metropolitan areas  of St.  Louis  and  Kansas City don't  match  the  number of reported cases or  the  number of people that are supposed to  receive care at  the  clinic we go  to.   St.  Louis area is  off by nearly  2000.  I  guess Alabama is where  they send  our case workers for interrogation training.  Gotta go.  It  is 1:49 A.M. and  the  laptop battery  is about  to  shut this  thing down  on  me.  Good  luck  on  your  meds. We went through  our entire retirement savings between trying to get  insurance and other programs to pay  for  meds and ending up  borrowing  money  up  to  our eyeballs,  before medicaid started to  consistently  pay.  The clinic ended up  provided me with 45  days meds one  time  so  I didn't have to  go  without.  having to go through   this mess all  over is  one reason I  won't move to  another state with one  of  the  kids. I've been asked to  move to Chicago several  times,  but  that state  has enough  money  problems as it is. I may  make a special trip to  drop  by  the  county  health office to see if  they secure  the records in  the same  manner that   Health and Senior Services  tells their STATE employees and  volunteers.  I do  know  the emails do  not  have the confidentiality statement that is required. I checked  in  my  trash  files to  make  sure. I get tired of going to the store or courthouse and  having people who  know me as  what kind of blood disorder we  have.  The  info leaks  somehow.  Thanks for the study  links.  I'll try to save my  notes if the  battery   doesn't get me  first.

Offline pos2007

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Re: Harrassment from the Health Department
« Reply #44 on: November 07, 2009, 11:37:20 AM »
actups,   all  I  can say  is  that I  am  sorry  for what you have  had to  endure. I  have been doing a lot of research  on  this the last few  nights and I  found where Southeast Missouri State University  in Cape Girardeau was sued in  a discrimination  suit where  they terminated a man for being  HIV  pos.  The University  lost and  had to  pay $600,000 plus $35,000 attorneys fees.  They also  lost  the   appeal.  Sadly it  turns  out I  know some  of  the  people  involved after reading  the  suit papers.  I can't  understand how people can treat others in such a way. I do  think  The point  was very well  made  that in rural areas they go  nuts.  In  St.  Louis,  I tell every doctor ( seen  over 40 so far this  year) and  they pass if  off as  no  big  deal and don't treat me any  different   for  the  hiv  than the cancer although I did have 3 doctors that were very degrading  about  the cancer because of the  HIV to  the point  my  wife was so  upset,  she told me I  was never going  back  to  those doctors again.   Locally,  they just about  pull  the  fire alarm  when  you  tell them  you are pos.
Diagnosed  CD4 138 VL. 38,000
Partner Diagnosed CD4 <20  VL.  488,000

Offline bocker3

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Re: Harrassment from the Health Department
« Reply #45 on: November 07, 2009, 03:34:06 PM »
I tested poz in Aug 2005 and have NEVER been contacted by the VA Dept of Health (nor has a friend of mine who was diagnosed in 2004).  So, I'm not sure that time of diagnosis is that big on folks who never get contacted.
Of course, the Health Dept rang me up pretty quick back 2003 when I had a case of Hep A (no harrassment though, just a call).
My friend (the HIV+ one, who never heard from the Health dept) WAS harrassed last year when he contracted syphilis -- he pretty much had to threaten them to stop calling and coming by his house.

Interestingly (to me anyway), I saw my ID doc yesterday and he told that the VA Dept of Health is doing an Observational study on HIV+ folks.  They randomly picked my name out of my doc's "hat".  It's voluntary, so they wouldn't get my contact info without my telling my doc it was ok.  I should be hearing from them soon. 

Mike
Atripla - Started 12/05
Reyataz/Norvir - Added 6/06
Labs - Pre-Meds
Sep05 T=350/25% VL98,559
Nov05 288/18%  47,564
Current Labs
May2013 691/31% <20

 


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