Right to privacy

    • September 20, 2007 at 9:18 pm

      sorry no info

    • Anonymous
      September 20, 2007 at 11:36 pm

      There is no longer privacy in this country. We the people have been to complacent. . .

    • Anonymous
      September 20, 2007 at 11:52 pm

      Since you’re already going to switch doctors (which yes, good call!), I feel like you should send a letter on formal letterhead (have any friends who are lawyers?) making clear that this doctor is to never again give out your personal information to anyone with out contacting you first.

      Or, for a more personal touch, call the doctor and tell them that your lawyer advised you to warn them against giving out personal information in the future (be it true or not!) 😀

      (I work at a law school, so I guess the scary legal angle is always on my mind)

    • Anonymous
      September 21, 2007 at 9:19 am

      Hi Dawn: There is a law protecting patient’s privacy and your doctor did commit a no-no. I think a phone call or letter is a great idea as is changing doctors. I am glad to hear about Kevin’s reflexes coming back-that is great news. And playing football is awesome. Hope he continues to improve. Jeff

    • Anonymous
      September 21, 2007 at 2:35 pm

      Hey Dawn: I checked the privacy statement and it does state that information may be given to government agencies:”We may disclose protected health information for public health activities, such as disclosures to public health authority or other government agency that is permitted by law to collect or receive the information.” So I assume your doctor was within her rights, though I would still talk to her about it. Jeff

    • Anonymous
      September 21, 2007 at 2:57 pm


      As per our conversation last night, Kevin has a right to privacy regarding anything whatsoever to do with the shedding of the dogs hair – specially if his mom wasnt able to vaccum it up!:D 😉 (Ok so I felt like a little light humor:p )

    • Anonymous
      September 21, 2007 at 5:24 pm

      I understand everyone’s right to privacy but what would have happened, if by the dr. giving the CDC your number, something great came of this and they found a connection to GBS/CIDP and immunizations?

      We all want an end to this awful disease. I’d talk to the guy on the street about Dell’s problem is he could find a cure.


    • Anonymous
      September 22, 2007 at 12:46 pm

      I agree whole-heartedly with what Lori (Dell’s_Mom) said. There are days when I feel like I’d make an agreement with the devil himself to find a cure. I’ll talk for hours about CIDP to anyone who will listen in the hopes that they will either 1) think of something than I haven’t or 2) it’ll help them if they ever meet anyone with it again.

      So the CDC called you – At least now they are investigating the use of immunizations causing autoimmune diseases. They used to take the stance that it was impossible to happen.

      It’s not like the dr gave your info to a stranger. It was a government agency who was trying to find a cause for your son’s illness. It’s not really a bad thing.

      Just my 2 cents.

    • Anonymous
      September 22, 2007 at 1:01 pm

      While I tottaly agree with it being good that the CDC is alert to and active in investigating gbs/cidp, and while I’d also talk for hours to whoever would listen just in the hopes to make some small dent in helping cure the illness, it is still a matter of choice to do so.

      cidp has taken so much away from me, the idea that someone else could appropriate my information on it with out my direct consent is upsetting. Regardless of whether or not it was for the greater good, I still feel like your doctor should have at least [I]notified[/I] you that there was a chance the cdc would be a-calling.

    • September 22, 2007 at 2:00 pm

      As I mentioned before, IF Kevin got gbs from an immunization, I would be more than willing to cooperate. The fact is, he had not been immunized since he was five! The pediatrician knew this. The cdc was calling her because of the other patients she had who DID have immunizations and got gbs. She offered Kevins name with there being no connection to immunizations. She might as well have offered info about a patient with cancer, allergies, aids, autism, and given their names as well. Kevin got his gbs (we believe) from multiple bee stings. I think you guys know by now that I would take the time to help anyone, especially someone with this cursed condition, I just feel she had no right to offer Kevin’s medical info when it did not pertain to the original inquiry being made.

      Why even bother wasting all the time, paper, effort, signing all of those stupid privacy sheets if it means nothing?

    • Anonymous
      September 23, 2007 at 2:10 pm

      I understand your concern with your dr giving out info on Kevin. However, it’s the dr’s responsibility to give out info to the government. If the government calls & asks the dr if she/he has any patients with X,Y,Z diseases the dr HAS to tell them the truth. She may have known that Kevin didn’t get GBS from an immunization but she knows that he does have it & maybe she was hoping that the CDC MIGHT be able to offer you an explanation as to what caused it. I just don’t think that the dr did anything wrong here.

      When Emily was dx’d with CIDP her info was given to the government. Apparently there’s some kind of census taken on chronically ill people or something. I’m not exactly sure what the details are but I know her info was reported. When she had a central line infection her info was given not only to the FDA & CDC but also the company that makes her brand of IVIG. Someone from ALL of those places interviewed Emily’s nurse to make sure that it wasn’t a problem with the IVIG. No one EVER spoke with me. I didn’t even know that had taken place until a few months later when Emily’s nurse told me about it.

      This info can NEVER be used against Kevin. EVER! So I think you need to look at the big picture. No harm was done & now at least you know that the CDC is looking into the vaccines.


    • Anonymous
      September 28, 2007 at 6:19 pm

      I have no idea why people have such blind faith in the U.S. gov’t – especially when it’s no secret that there has been a landslide of privacy violations in the last few years. It’s not just being [I]paranoid[/I] when there is good reason to be cautious.

      Anyway, here is a link where you can read all about disclosure to public health agencies: