13 Responses

  1. Anne
    Anne April 14, 2011 at 7:37 am | | Reply

    This whole thing does not bode well for healthcare, if this is a model others consider using. I think that medical decisions should almost always be left to the medical professionals who have spent upwards of 8 years in specific medical training in order to make those decisions (in addition to the patient him/herself, of course), rather than some government-appointed committee. And $86k, seriously??? What are the limits for adults? What are the procedures that the committee turned down?

  2. Casabby
    Casabby April 14, 2011 at 8:01 am | | Reply

    On the surface it looks as though this process will end up with a good result for children 18 and under. But then what happens when a child becomes 19? Now you only get 100 strips a month or 3.3 tests a day. Of course everyone knows that if you are an adult, you must have Type 2 anyway. We can all become like Halle Berry and switch from Type 1 to Type 2 when we graduate from high school….

  3. Natalie Sera
    Natalie Sera April 14, 2011 at 10:03 am | | Reply

    Just for your information, Casabby, Halle Berry has what is variously called Type 1b, non-autoimmune diabetes, Flatbush Diabetes or Ketosis-prone Type 2. It occurs almost entirely among Blacks and Asians. The person is usually not overweight, and presents in ketoacidosis, thus LOOKING like a classical Type 1. However, after BGs get under control, the person is NOT dependent on insulin, and can often go without any treatment at all. But this doesn’t last; it comes back looking like Type 2, and can usually be treated with oral medications, unless the person goes into ketoacidosis again, usually as a result of high BGs. So Halle Berry is telling the truth when she says she was originally diagnosed as Type 1, but it turned out to be Type 2. It’s unfortunate that so many people don’t know about this type of diabetes.

  4. Mark
    Mark April 14, 2011 at 12:44 pm | | Reply

    Wow, that is a crazy report, but it shouldnt surprise anyone, the government was doing it.
    Absolutley ridiculous

  5. Andy
    Andy April 14, 2011 at 2:27 pm | | Reply

    Lee, you got it mostly correct but made one error.

    I am a Washington State resident and the parent of a young child with type one. I was embarrassed for my State and dismayed by the ignorance of the report. You correctly pointed out some of the glaring issues with the work of the HTA but there were certainly others. On the whole, it was never based on any pertinent factual information. Worse than that, the work even failed a basic common sense test.

    With respect however, there is one thing that I strongly disagree with in your commentary. You stated “But painfully absent from the advocacy was the Juvenile Diabetes Research Foundation.” This is just flatly incorrect. Since I have a vested interest in the outcome, I have watched this issue closely. I have also become acquainted with the local JDRF chapter. It was clear that the HTA made their decision in spite of the information provided by the JDRF and others. I can tell you the JDRF was deeply involved and was as influential as any group in marshaling the forces to have the HTA decision reversed.

    There are several actions the local JDRF chapter took to prevent this policy from being enacted. First, I know they started filing responses against the proposed HTA policy back in 2009. Second, they submitted letters and public comments to the committee regarding the relevant research and national treatment standards. Third, they put together comments from the research community. And lastly, they worked with the other groups to organize the stakeholders (including a T1 family) to provide witness testimony. Our own Endocrinologist, who is a nationally respected physician and researcher, AND a member of the local JDRF Board of Directors, attended the hearing. I can’t defend everything the JDRF has ever done but in this case they were a tremendous asset and as a father, I am very grateful they were fighting on behalf of my daughter.

  6. Sam
    Sam April 14, 2011 at 5:45 pm | | Reply

    Well Wil, you say it is not bureaucrats who make the decision, but clinicians. This is done by Washington STATE. So, hence government healthcare and I’d love to see who these non-bureaucrat clinicians are. My bet is they are on the government dime and though clinicians, are also administrators and thus a part of govt bureacracy. Granted the private sector in the corporate world can give the govt a run for its money in the bureacracy category but at least in the private sector, the free market has a part in deciding and if someone wants to allocate a certain amount of his/her money to test strips they can get them but this sounds like a govt panel making decisions to me. Just like what they have in other countries and what we can surely expect if we don’t repeal Obamacare and have some actual healthcare reform.

  7. Wil
    Wil April 15, 2011 at 5:51 am | | Reply


    Thanks for pointing out the hard work of the local JDRF on the ground in your state. I’m not sure if you checked out the longer version of the piece at LifeAfterDx or not, but what was missing from JDRF either locally or nationally was a formal response to the final report, which was virtually the last chance to have input on the written report from Spectrum. I was very glad to hear, however, that they helped rally testimony. And I’m glad your kiddo still has the strips she needs.

  8. June S.
    June S. April 15, 2011 at 8:07 am | | Reply

    I take issue with the manufacturers of test strips. Each one now retails for more than $1.00 per strip. This is ridiculous! Why can’t these companies be forced to lower their prices (or at least stop raising them?) I don’t get it. It’s highway robbery!

  9. Andy
    Andy April 15, 2011 at 8:35 am | | Reply

    Wil, thanks for the reply. I thought what the JDRF contributed was a formal response but nevertheless, clearly everyone needs to do more. That the HTA could get as far as they did is frightening. I wish the members of the HTA and the supporting congressional committees would read, re-read and read again your full blog post.

  10. Lauren
    Lauren April 15, 2011 at 10:12 am | | Reply

    This is so crazy. I can’t understand this. Thank you for posting! I had no idea this was going on.

  11. M. Simon
    M. Simon April 16, 2011 at 3:57 pm | | Reply

    Who pays?

    As for government forcing down prices what happens when they come after your industry? Or do you work for government?

  12. Kristin
    Kristin April 18, 2011 at 4:01 pm | | Reply

    Great post! I’m on the WA JDRF board – interesting about not signing on to the report. I’ll follow up on that, but otherwise – JDRF was quite active and involved here. One of this year’s Beat the Bridge ambassadors (they’re brothers) and their mother testified, as did a couple board members. More of us wanted to, as we were keenly interested, but there wasn’t enough space at the hearing.

  13. unkee2007
    unkee2007 April 22, 2011 at 3:29 pm | | Reply

    Also adult diabetics as well, it’s funny this subject is coming up because right now I have had a terrible incident where my diabetes doctor started me on intense insulin therapy. Needing to do the carb to insulin ratio and checking my glucose six times a day I had needed a dosage override for my test strips. My Medicare coverage had no problem with the override however the state Medicaid coverage was very reluctant in telling my pharmacy that it was too soon to refill the night authority had my hundred strips for the month not recognizing the dosage override prescribed by the doctor’s. And yes the state now mandates that there is a 200 strips limit per month for every one. Meanwhile it has taken eight days without strips which can cause great harm to my care and well-being during this critical time in my disease so I do find it ironic that the state is dictating how many strips are used by diabetics each month.

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