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Author Topic: The doctor's office sent my labs to my parents...  (Read 2603 times)

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Offline knowdifferent

  • Member
  • Posts: 11
The doctor's office sent my labs to my parents...
« on: August 16, 2006, 04:39:39 PM »
I'm completey stunned by what has happened with my confidential records and I thought I would get some feedback here first.   I just found out I was positive May 4 and had my initial HIV appointment in July.  I live in a very small, southern, conservative town and drove 200 miles to Atlanta to avoid any awkward situations.  I never gave the hospital any information other than my name and a post office box.  By the way, I'm 33 years old.  The next thing I know my parents give me a bill for $2700 (the hospital estimated anywhere from $300-$1000) addressed to my father at my parent's address.  My name was next to "Patient:"  My parents are religioius, conservative people and did not know of my status.  I did not tell them because they're just not cut out to deal with it.  Now, however, it's all on the table.  Not only are they freaked out because I'm going to die from a terminal s.t.d., but I'm also gonna burn in hell because of it.  The hospital I chose to visit is touted as one of the best in the country.  Obviously from the price tag on the blood work, they don't come cheap.  I'm furious!  My parents are a mess!  Any thoughts on how to handle this...Mentally, I was doing very well until this came along.

Offline blondbeauty

  • Member
  • Posts: 1,785
Re: The doctor's office sent my labs to my parents...
« Reply #1 on: August 16, 2006, 05:08:16 PM »
I think the only thing you can do now is educate your parents on what does being HIV+ mean. Make sure they understand it is like any other infection but the only thing that makes people look at it in a different way is that there is no cure for it yet.
But make sure they understand you need their support and that you are not going to die of HIV.
Good Luck!
The only member in these forums approved by WINBA: World International Nail and Beauty Association.
Epstein Barr +; CMV +; Toxoplasmosis +; HIV-1 +.
Counts when starting treatment:
V.L.:80.200 copies. CD4: 25%=503
Started Sustiva-Truvada 14/August/2006
Last V.L.count (Oct 2013): Undetectable
Last CD4 count (OCT 2013): 52%= 933

Offline frenchpat

  • Member
  • Posts: 516
  • Love your friends, don't eat them.
Re: The doctor's office sent my labs to my parents...
« Reply #2 on: August 16, 2006, 05:24:25 PM »
Hi,

I am not familiar with the health system in the US so I can't help you there, but reading your message I feel I have to try and help.

The manner in which your parents were informed is shocking. But you cannot change that now, it is too late. I understand you feel raw about this and I am sorry for you.

However, this may be a blessing in disguise in the long term. At least now that "everything is on the table" you won't have to spend energy in hiding from them and invent stories. I don't know your parents but I wouldn't underestimate them.  If they love you and care for you they'll adapt to the change.
I suppose one thing to do is give them (and yourself) some time over this. A good thing would be to try and keep communicating with them if that's possible.

As for "dying from a terminal std", I wouldn't bet on this. In all the years that you have ahead of you if you stick to treatment and look after yourself, you probably stand a bigger risk of being run over by a truck :-\

As for right now, concentrate on getting back to your calm state of before the events, and breathe deeply. You've found a great place here with good people who will be there for you anytime you need support, information or a good laugh.

stay well, :-* :-* :-*

Pat
People have the power - Patti Smith

Online RapidRod

  • Member
  • Posts: 15,193
Re: The doctor's office sent my labs to my parents...
« Reply #3 on: August 16, 2006, 05:30:50 PM »
Nothing you can do. Your family knows and you can't change that. 2700, hell that would be a cheap bill for me.

Offline emeraldize

  • Member
  • Posts: 3,260
Re: The doctor's office sent my labs to my parents...
« Reply #4 on: August 16, 2006, 05:35:15 PM »
I think you might be well-advised to run this by someone who could give you some objective legal perspective. I have no doubt there will be many responses to your post to follow mine. But, I can tell you, if this had happened to me, once I'd shaken off the shock, I would seek counsel pronto. The very same purveyor of expensive blood labs, is the very same source that could likely, and should, be held accountable for a violation of your privacy and consequently compensate you for this most unnecessary, traumatizing outcome. As to your family, give them a little time to process their fears and feelings. I'm sorry this happened to you.

Offline LatinAlexander

  • Member
  • Posts: 599
  • Bogota, Colombia
Re: The doctor's office sent my labs to my parents...
« Reply #5 on: August 16, 2006, 06:07:09 PM »
Oh man. I am sorry. But there is no way to go back on this. I live hiding everything, and , believe me, that's difficult. Tell your parents how much you love them, and invite them to these forums. Just look for some histories, print them, and give'em to them.

Handling conservative societies requires a lot of strenght (I know what I am talking about boy, I am @ southamerica), and I am sure you will be able to make it.

And in anycase, even from the distance, we are here to try to support you.

HEADS UP, GO!!!

Alex
Poz since Jul 19 2006
Initial numbers : CD4-250 VL 3500
First labs after HAART (Dec 04-2006) : CD4-432 VL-<40 (Undetectable)  cd4%=25.11%
Started HAART: Combivir+Efavirenz Aug 26 7:38 pm
Feb 08 2007 - Gradually stopping HAART cause of Myalgia. Protecting Efavirenz. Stopped Efavirenz, ahead with Combivir....
February 17 Combivir stopped.
April 3 -07 : Started ddi+3tc+efavirenz...
Gay and positive (What a lack of Identity...:) )
Looking for my Ben....

Offline Christine

  • Member
  • Posts: 1,069
Re: The doctor's office sent my labs to my parents...
« Reply #6 on: August 16, 2006, 06:13:42 PM »
I am so sorry this happened to you. My heart sank in my chest as I was reading your post. You have an absolute right to your medical privacy. HIPPA (in the US) act protects your medical information. I would contact an attorney and speak with someone about this. An ASO in Atlanta would probably be able to give you a reference to an attorney who is familiar with the HIPPA laws, and perhaps someone who would be able to provide low-cost or free help. Document everything that happened. Every little detail.

Your parents know. It is all on the table now. They will have a very difficult time absorbing all of this. Be patient with them. Provide lots of information for them. Make sure they know you love them.

My guess would be that part of their response which you might be reading as negative against you, is fear that they might loose their child.

Work through this together. Hang in there.

Christine
Poz since '93. Currently on Procrit, Azithromax, Pentamidine, Valcyte, Levothyroxine, Zoloft, Epzicom, Prezista, Viread, Norvir, and GS-9137 study drug. As needed: Trazodone, Atavan, Diflucan, Zofran, Hydrocodone, Octreotide

5/30/07 t-cells 9; vl 275,000

Offline Eldon

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  • Posts: 2,664
Re: The doctor's office sent my labs to my parents...
« Reply #7 on: August 16, 2006, 06:20:32 PM »
Hello Knowdifferent, it is Eldon. First of all Welcome to the forum family where you will find love, support, encouragement, understanding, fun , and answers to many of your questions relating to HIV/AIDS. This is a good group and there is a lot of information here.

As for your situation, the best thing you can do now is accept it for what it is. Your parents found out through a hospital bill in the mail and they are at this point very concerned for their son and his health condition. Sit down with them and discuss the situation, don't try to avoid it. They are a part of your current support system and you need them now more than anything else to reach out with open arms of their love for you. 

There are a number of issues that will surface as you talk with them. Just handle each subject honestly and accordingly as it turns up. You will want to educate them as much as possible on HIV/AIDS a reassure them that you will take care of your health from this point on.

Feel free to come to the forum and vent your frustrations and to keep us posted on your situation.



poznoregon

  • Guest
Re: The doctor's office sent my labs to my parents...
« Reply #8 on: August 16, 2006, 09:52:55 PM »
Your health information is definatley protected under HIPPA (Health Information Privacy Protection Act) and as a result of this I think the hospital can be fined for this type of information being released to another party. As mentioned above check with a local ASO. Maybe you can get them to dismiss the charges of your bill as a result of this.

Offline gerry

  • Member
  • Posts: 522
  • Joined AM Feb 2003
Re: The doctor's office sent my labs to my parents...
« Reply #9 on: August 16, 2006, 11:13:59 PM »
The hospital should have a HIPAA compliance officer with whom you could file a complaint.  They do take these breaches of confidentiality very seriously because like Pozinoregon said, they could be fined for these.  I would suggest you start with that; I would be surprised if they would not launch an investigation since it is in their best interest to do so.

P.S. Trivia:  HIPAA actually stands for Health Insurance Portability and Accountability Act.  Insurance continuation when changing employers, as well as COBRA rules fall under the Portability part while Patient Confidentiality rules, including those involving electronic health records, fall under the Accountability part.

Offline allanq

  • Member
  • Posts: 687
  • still life with pills
Re: The doctor's office sent my labs to my parents...
« Reply #10 on: August 16, 2006, 11:24:08 PM »
How did the hospital even know your parents' address? Did you list their name and address on any form, say, as an emergency contact? Even if you did, the hospital certainly had no right to send your private medical information to anyone but you without your written consent. I agree with the posters before me who suggested that you take legal action. This is outrageous behavior on their part, and they shouldn't get away with it.

The amount of the actual bill may be the least of your worries, but I can't understand how it could have come to $2,700. Assuming an extended office visit and a round of the usual tests, I don't think the bill should be anywhere near $2,700. I would contest the bill, based on their initial estimate of $300 to $1,000. I'm wondering if they performed a phenotype test, which can be quite expensive, but which probably wasn't necessary at this point. Even if they did, that cost should have been factored into their original estimate.

I hope that your parents will eventually come around and accept you without judging you. I also hope you find a good doctor closer to your home. This forum is a good place to get information and to ask questions. You're going to be O.K.

Allan
Top (Breakfast): Prezista, Norvir, Isentress, Zoloft (2), Glyburide (2), Aspirin
Bottom right (Dinner): Prezista, Norvir, Isentress
Bottom left (Bedtime): Sustiva, Trazodone (2), Lipitor, Septra
Center: Alprazolam (Xanax)
Not shown: various vitamins & supplements

Offline Bartro

  • Member
  • Posts: 124
Re: The doctor's office sent my labs to my parents...
« Reply #11 on: August 16, 2006, 11:24:18 PM »
Such a blatant violation of HIPAA.  I'm sorry this happened to you.  My former doctor's office also similarly compromised my lab work but luckily, I was able to intercept the delivery.  My parents are quite elderly and extremely right wing conservative.  (Pictures of Falwell and Robertson on dining room wall.)  If and when I decide to tell them it will be if and when I decide.

In an ideal world I would tell my parents and they would some how change their views.  I'm afraid this is wishful thinking.  My mother is more likely to drop dead of a hear attack.

Everywhere I go I get a form concerning HIPAA.  Everyone seems to be on top of HIPAA.  I even think my video store has a HIPAA policy, but when it really matters an ignorant medical facility blows it completely.

Here's a link to a page with HIPAA information with a link on the page for the form to file a complaint.  

http://www.hhs.gov/ocr/hipaa/

Best wishes to you and I hope everything works out with your family.
Rusty

Offline brandy

  • Member
  • Posts: 44
Re: The doctor's office sent my labs to my parents...
« Reply #12 on: August 25, 2006, 11:19:58 AM »
First of all i am a little bit puzzled , my questions are did you have insurance? are you aware that there are clinics and agencies out there that will test you for free?
Next isssue I will try not to be too judgemental here, but your parents as religious as they are and as shocked as they are need to come to some point and realise that your are still their child, and if they are true christians and understand the bible the way they should , they need to be more like christ, in the essence that he cared for the people that society cast aside.
Your next step is that you can sue the hospital for breach of confidentiality, if you did not give them your parents information, find out how they got it.
what you need to do is get some advise from a hiv lawyer or aids organization in your area.
Next do not despair, you are no different from any body else, you need to be concerned about your health and well being, the last thing you need to do is get stressed out about this, maybe you can get some kind of counselling together with your parents to help you deal with this.
Rest assured that you are not alone.
LOL
Brandy

Offline J.R.E.

  • Member
  • Posts: 6,962
  • Joined Dec-2003 Living positive, since 1985.
Re: The doctor's office sent my labs to my parents...
« Reply #13 on: August 25, 2006, 11:31:48 AM »
The hospital should have a HIPAA compliance officer with whom you could file a complaint.  They do take these breaches of confidentiality very seriously because like Pozinoregon said, they could be fined for these.  I would suggest you start with that; I would be surprised if they would not launch an investigation since it is in their best interest to do so.

P.S. Trivia:  HIPAA actually stands for Health Insurance Portability and Accountability Act.  Insurance continuation when changing employers, as well as COBRA rules fall under the Portability part while Patient Confidentiality rules, including those involving electronic health records, fall under the Accountability part.



Hello,

 Just want to make sure you have the read the info that Gerry has given you. There are VERY STRICT rules and regulations regarding privacy and disclosure. There are heavy penalties for those that don't play by the rules.

I work in such an establishment, and I have to be very careful as far as the info that I can give out, and that includes to family members !! That includes information gien out over the telephone also

Check into everything.


Take care of yourself--------Ray
« Last Edit: August 25, 2006, 11:33:36 AM by J.R.E. »
Current Meds ; Viramune, Epzicom, 40mg of simvastatin, 12.5mg of Hydrochlorothiazide.
Metoprolol tartrate 25mg



http://forums.poz.com/index.php?topic=40802.0

http://forums.poz.com/index.php?topic=45159.0

http://forums.poz.com/index.php?topic=39722.msg495621;topicseen#msg495621

http://forums.poz.com/index.php?topic=46806.0

http://forums.poz.com/index.php?topic=39414.msg491701#msg491701


 In October of 2003, My t-cell count was 16, Viral load was over 500,000, Percentage at that time was 5%. I started my first  HAART regimen  on October 24th,03.

 As of DEC 9th, 2013,  t-cells are at 437 Viral load  <40 .

 Current % is at 16% (L)

  
 62 years young.

Offline cph9680

  • Member
  • Posts: 325
Re: The doctor's office sent my labs to my parents...
« Reply #14 on: August 25, 2006, 02:56:54 PM »
That's a pretty shitty dismal thing to happen.  And I understand your parent's feelings.  It doesn't get anymore small-minded, redneck, backwoods, Christian hillbilly than my dad...and he was the first person I told.  And I think this whole affair so far has opened his mind to the possibility that not everything that the fundys put out about HIV is right.  We've both become better (sometimes) people because of this!

Offline franfrog

  • Member
  • Posts: 238
Re: The doctor's office sent my labs to my parents...
« Reply #15 on: August 25, 2006, 03:45:13 PM »
I am even a little more confused, di your parents open your mail?  Why could you have not given them just that you had to go to the doctors office and it was a bill.  How exactly did they know what it was for? 
Either way you can not change what they know but I would say defenitly educate them on this.  Good luck.
7/05 diagnosis cd4- 52 vl -?
08/05 cd4-299 vl-1900
10/05 cd4-249 vl-349
12/05 cd4-349 vl-52
03/06 cd4-454 vl-<50
06/06 cd4-508 vl-<50

Offline aphaun

  • Member
  • Posts: 45
Re: The doctor's office sent my labs to my parents...
« Reply #16 on: August 25, 2006, 05:37:16 PM »
I understand and sympathize with your situation. It is horrible that your confidentiality was breached and I think you have a legitimate case for legal action. As far as dying from this disease is concerned, you have access to sophisticated therapies that are for less crude than they were when we first became aware of HIV/AIDS, and you have tools to help manage your infection without too much trouble.
One of the problems we all face is the inability to talk about HIV/AIDS in the first place. The stigma attached to it makes fear one of the greatest barriers to treatment, peace of mind and to the prospects of stopping this pandemic.
I wrote an appeal in an effort to lift one of the causes of the irrational fear that makes us so afraid to talk about HIV/AIDS. If we weren’t so fearful we wouldn’t have to assume a pseudonym or some sort of disguise, like here on this forum. It’s sad that we’re so afraid to talk about HIV in this part of the world in 2006. I posted my appeal in “AIDS Activism”.
If you were doing well mentally before your parents found out, I hope you will be able to resolve the stigma among you and be able to support each other, because it affects you all.

aphaun



Offline Life

  • Member
  • Posts: 2,388
  • Member 2005
Re: The doctor's office sent my labs to my parents...
« Reply #17 on: August 25, 2006, 07:17:10 PM »
What ever you do... Face this head on and acknowledge the fact they know now.....  As you proclaim Your "KnowDifferent" don't act different.... ;)
« Last Edit: August 25, 2006, 07:18:42 PM by Eric »

 


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