Leaning Towards NO on Inhaler Study

It is with a mixture of disappointment and relief that I convey my latest thoughts on participation in the inhaled insulin study. I’m definitely leaning towards No. It wasn’t so much that a dear loved one looked me in the eye and said, “Why would you want to make yourself a gineau pig?”, or even that a family member who happens to be a doctor essentially advised, “Say no to experimental drug studies across the board.”

What really tipped the scales was the moment that I sat across from my wonderful CDE at UCSF (whoDecisionmaking_1 I’m seeing again, thanks to new/old insurance). After looking at my records and talking with me at length about my current D-control issues, she said: “This will just complicate things. Since you’re my patient, I have to advise you on what I think is best for controlling your diabetes, and I don’t see how this will help you with your current challenges.” Right you are, I’m sure.

In the back of my head were also the two key issues I’d asked the study coordinator to investigate for me: What percentage of Phase I and Phase II study participants actually experienced respitory problems?! And what about confidentiality? Will the company allow me to write about my experiences in the study? (The study rep hasn’t gotten back to me with answers yet, which I take as a bad sign.)

Note that I certainly wouldn’t sign up for the study for sole purpose of blogging about it. No sir. But if I participated, I would find it incredibly difficult NOT to be allowed to write about it. Like a standup comedian volunteering for summer drama camp and not being allowed to make jokes about what goes on there… NOT!

Anyway, the verdict is to hold off till spring and then get serious about pumping. The idea being that my life might “calm down a bit” by then. HAH! We shall see.

9 Responses

  1. David
    David December 22, 2005 at 11:46 am | | Reply

    Amy, I really love your Executive Decision-Making graphic. I printed out a copy for my desk. :)

  2. Diabetes Daily
    Diabetes Daily December 22, 2005 at 12:23 pm | | Reply

    Inhaled Insulin v. The Pump

    Amy at Diabetes Mine says that she’s leaning against participating in an inhaled insulin study. Her primary reason is, as her CDE said, “this will just complicate things.” She also noted to ancillary issues: “What percentage of Phase I and…

  3. PrintCrafter
    PrintCrafter December 22, 2005 at 3:01 pm | | Reply

    Better to make a wrong decision than none at all. Keeping your self up in the air is taking one month off your life every day. My advice: fish or cut bait!

  4. Nick
    Nick December 23, 2005 at 6:42 am | | Reply

    No guinea pig, I.
    Smart decision. I would not want to sign a nondisclosure agreement either. What do you get out of it?
    I would do the same thing.

  5. Violet
    Violet December 23, 2005 at 7:45 am | | Reply

    Amy, just wanted to voice support and respect for your stance on this, however it may evolve. Thanks for sharing your thought process. It sounds like a difficult decision, and I’m glad you’re taking good care of yourself.

  6. Scott
    Scott December 23, 2005 at 8:24 am | | Reply

    Amy, inhalable insulin is not worth participating in a clinical trial for. Most notably, it does not replace basal insulin which still needs to be injected, therefore it does not eliminate needles for patients with Type 1 anyway.

    I wrote an editorial for this in the Spring 2005 edition of Insulin-Free TIMES (unfortunately, its no longer online, though the article can still be seen at: http://www.diabetestalkfest.com/strumology/nanotech.php). You might find it interesting reading!!

  7. David
    David December 25, 2005 at 5:37 pm | | Reply

    I strongly agree with you. I also wonder about how accurate the dosage can be. One unit (or a half unit) can make quite a difference when injecting. Will we still be able to still get that precision with inhaled insulin? What if we cough or sneeze after taking it? Would a having a cold affect absorbtion? Maybe these have already been worked out, but I haven’t heard the answers yet.

  8. Inhaled Insulin v. The Pump
    Inhaled Insulin v. The Pump July 1, 2011 at 9:40 am |

    [...] Amy at Diabetes Mine says that she’s leaning against participating in an inhaled insulin study. Her primary reason is, as her CDE said, “this will just complicate things.” She also noted to ancillary issues: “What percentage of Phase I and Phase II study participants actually experienced respitory problems?! And what about confidentiality? Will the company allow me to write about my experiences in the study? (The study rep hasn’t gotten back to me with answers yet, which I take as a bad sign.)” [...]

  9. Z pyys
    Z pyys February 23, 2013 at 1:34 pm | | Reply

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