Wednesday, September 8, 2010

An opportunity to speak out


I received an email today from the National Organization for Rare Disorders (NORD). Many times over the years I have heard from people that believe they have Kennedy's Disease, but are afraid to have the genetic test. They are concerned that the results of the test would be made available to their insurance company (or others). For this reason, many families have been left hanging ... wondering whether the father has Kennedy's Disease. The major issue is that their insurance company might raise their premiums or they could not change insurance companies because of a preexisting condition.

If this has been, or still is, a concern for yours, please consider contacting Mary Dunkle today at NORD. We need this issue brought forward and I am pleased to see the NY Times take on this subject. I hope that some good will come from this article.


 




TO: NORD Member Organizations

Re: New York Times article regarding genetic testing and medical records

The New York Times has contacted NORD for assistance in identifying patients to interview for a story on medical privacy and, specifically, what should be done when patients say they don't want results from genetic tests in their medical records. The AMA says that doctors can keep a separate medical record without such data but, if they send it on to insurers, they will need to note that genetic information has been withheld which, of course, is a red flag.

The Times is looking for patients or family members to interview who have faced these issues. If any of your members would be interested in being interviewed, please have them write to mdunkle@rarediseases.org with a very brief (one or two paragraphs) description of their experience. The story will be written within the next few days so it would be important to reply soon.

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4 comments:

  1. StanSeptember 8, 2010 at 4:04 PM

    Very interesting. I suscribe to the newsletter and have not recieved it yet.
    I was wondering when the news media would pick up on what companies and insurance companies are doing, and the concerns people have because of it.
    We should be aware that the issue is bigger than those with Kennedy's Disease or any genetic disorder. It is bigger than just the individual with the disorder. It also affects children and grand-children. The steps that the Government is taking will not be enough, or soon enough in my opinion.

    ReplyDelete
  2. BruceSeptember 9, 2010 at 10:51 AM

    Stan, yes, this is an issue that reaches far beyond just genetic testing. Since my audience is 95% KD'rs and I have heard from many with this privacy concern, my focus was on my readers.

    Thanks for reading and commenting.

    ReplyDelete
  3. AnonymousSeptember 10, 2010 at 11:13 AM

    Hi Bruce,

    First of all I would like to say how interesting your blog is. I have no contact with any KD people (I live in England) so it is nice to hear your views on many aspects of the disease. I have a suggestion for a subject for you. I would like to know the position of general anesthesia and KD affected men.
    If you could cover how KD affects anesthesia, are there any options, at what stage in the KD lifecycle does this become an issue. I have this fear of having to have an emergency operation and because KD is such a rare disease the surgeons etc may not be aware of the risks.

    Any information you have would be most useful

    Best regards
    John

    ReplyDelete
  4. BruceSeptember 10, 2010 at 11:14 AM

    John, great minds think the same. For the last couple of weeks I have been thinking about this very subject.

    Thanks for reading my blog and for commenting (especially about potential subjects).

    ReplyDelete

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